smoaksignal

Website Change!!

2011-05-16T22:27:00.000-04:00

GO TO WWW.SMOAKSIGNAL.COM FOR THE LATEST POSTS!

Our website has been radically changed and now I will be blogging on its homepage. I will keep this blog in place for the previous posts on it. I will continue to interact here with comments from the previous posts.

So, let smoaksignal.com be your place to go for updates and be sure to interact there.

The Uncommon Needs blog will continue and I hope to find new items to add there as well.

Thanks to all and I hope you enjoy the transition.

iGrace

2011-05-09T14:28:00.002-04:00

This past Christmas, my seven-year-old son was surprised by his grandparents with an iPod Touch. It was amazing how quickly he figured out how to use it and where the “app store” was! It wasn’t long before we started downloading appropriate apps, games and music. It has been almost five months and this gift has not grown old. In fact, we have had to put time limits in place to prevent too much gaming.

We have also tried to use this gadget as a tool for discipleship. We found there were many Bible apps available for it, but the other night, the concept of the iPod became a tool.

My son and I were talking about grace, God’s grace shown in the cross and tomb; His unmerited favor on us to forgive our sins and transform our lives into the likeness of Christ. I was trying to find a way my son could better understand it, that God’s grace is a gift that we receive and use. In a sudden and rare moment of inspiration, I asked, “Jacob, do you remember getting your iPod for Christmas?”

“Yes,” he said.

“Would it have made sense if you just set it on the shelf and never used it?” I asked.

“No. I wouldn’t do that!” he said.

“God’s grace is like that,” I said. “We receive it as a gift, we did not earn it. But we don’t just set it on the shelf. We use it everyday. Every time you study Scripture, pray and learn something new about God and yourself, it is like downloading another app you can use.”

Knowing how much my son likes getting a new app, I hope this illustration drives home the continued, daily need of “syncing” with God. But I quickly realized I needed this reminder even more than he did. I enjoy studying Scripture as it is a major part of my scholarly work. Consistent Bible study is not as difficult for me as it used to be, however I am responsible for more than my own quiet time. As a husband and father, I am to be the spiritual leader of my home (Ephesians 5:22-6:4). Where I struggle to be consistent is leading my family in Bible study and prayer on a regular basis. Some weeks are better than others, but it has not become an expected, weekly, much less daily, occurrence. I am to be like technical support for my family and make sure I assist them with their “sync and downloads” from the Father.

Download guilt! Listening to Christian leaders on the radio and reading their books, keeps me aware of my inconsistency. They want me to not only have my own Bible study time, but prayer and study with my wife as a couple and family devotion as well. How in the world am I supposed to do this and work, teach, preach, mow the grass and get dinner to the table? It can feel like three more things I have add to our hectic and full schedule or I’m a bad parent and spouse. Dinner, carpool, and deadlines fill our week. Getting to church consistently and on time is hard enough (and we often rationalize that the hour of Bible study and prayer we get there is enough). Time seems to vanish and before we know it another week has passed and still no personal, couple, or family Bible study. Busyness builds the stress and we would much rather have fun playing a game that launches disgruntle birds than to open the Bible and study. It’s easy to find ourselves just existing through our daily life and not worshiping as a family at home.

This causes me to also miss the power of God’s grace. I so often view my role of spiritual leader as “one more thing that has to be done.” If I actually check off the “family devotion” box this week, then I feel successful. It’s the same feeling of success I have when finishing a project like building a deck or replacing the windows. But that is living by works, not in grace. This attitude robs family devotions of the joy they are meant to bring. Now, I must reassess if the things in my life are as necessary as I assumed they were. Compared to the discipleship of my wife and son, mowing the grass can wait. Loving my wife and giving myself up for her as Christ did for the Church and being used by God in her sanctification far outweighs watching the season finale of my favorite television show. Raising my son in the discipline and instruction of the Lord takes precedence over that next email, phone call or deadline at work or church. Knowing that my son is commanded by Scripture to honor me as his father, I want to be the kind of father that is easy to honor. Unfortunately, I often turn these things into checkboxes on my to-do list and my flustered attitude shows through. I am having to remind myself daily that my family’s discipleship is not to be scheduled around everything else, but that everything else is to be scheduled around my family’s discipleship.

By God’s grace, I can put the weekly schedule into perspective. My family are not items on my calendar app, they are my sister and brother in Christ. They are God’s children and disciples, and He has graciously given me a degree of stewardship in their growth. This stewardship and responsibility can only be met by God’s grace and not my own strength. It means I need to cut out the fluff in my week. At first, I pridefully didn’t think there was any fluff. I’m busy with “important” things that matter, and that makes me feel “important.” But there is plenty of fluff and it distracts me from my highest and most important calling in ministry: my family.

Our family has received the gift of grace and I pray we don’t set it on the shelf to collect dust. I pray we will increasingly embrace that gift and through it “sync” with our Lord in a surrendered life. I pray we will increasingly open the Scriptures more than our laptops and gadgets. In response to the application of grace God put on us, we will download the apps of Bible study, prayer, and instruction of the Lord.

What if God Designed __________________ to Make us Holy More than to Make us Happy?

2011-05-05T00:07:00.003-04:00

I'm shamelessly borrowing a subtitle from Gary Thomas' book Sacred Marriage except I put a blank where the word "marriage" goes. Maybe there are some other things that can go in that blank. Gary makes a great point in this book that many Christians go into marriage with expectations which have been shaped more by our culture than by Scripture. When I share the subtitle of this book with folks and say, "What if God designed marriage to make us holy more than to make us happy?" their brows wrinkle in repulsion!

We go into marriage with expectations of excessive romance and our culture pumps these impossible images into our brains about what it should look like. Hollywood is no friend to us here. As Gary mentions in the study materials for his book, when marriages go south, the people quickly question if they married the wrong one, but they never question if their view of marriage is wrong. I believe our culture has reduced our idea of marriage down to a saccharine glob of infatuation and we have not learned what mature love looks like. In our culture, we cringe at the idea of arranged marriages. Our first objection is, "What if they don't love each other?!" But for those of us who have been married long enough, we know that at some point you must "arrange" your marriage so to speak. You must make a decision to stay with this person, even if the ooey-gooey feelings have faded. Mature love is found when we must choose it, especially when we can't feel it and still choose it.

What do you picture when you hear the word "holy?" Do you picture an ascetic monk? Do you picture someone like John the Baptist? Do you picture a priest? Cathedral? Do you think rules, rules, rules? Rules by themselves do not make us holy, but there are ten rules that point us toward holiness. The Ten Commandments were never a checklist. Certainly we should follow them, but not without seeing what these commandments point to. The first four of the big Ten are about us maintaining a right relationship with God and the other six are about a right relationship with others. This is how God chose to define holiness in the Old Testament and reiterated this in the New as well. Marriage will reveal our weaknesses in relationships. It will reveal our selfishness. It will reveal our faults and sinfulness. It will show that the "greatest commandment" we follow is "I love myself with all my heart, mind, soul and strength!" and "my neighbor a little less than myself."

When we find rifts in families, churches or denominations, maybe we should insert them into the blank above. "What if God designed my family to make me holy more than to make me happy?" "What if God designed my congregation to make me holy more than to make me happy?" It's not that God has a problem with us being happy, it's just that He knows there's something even better than happiness.

In 1 Peter 1:13-16, we read a sort of thesis statement of this letter:

Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ. As obedient children, do not be conformed to the passions of your former ignorance, but as he who called you is holy, you also be holy in all your conduct, since it is written, "You shall be holy, for I am holy."

Interestingly, Peter tells us to think, not feel, our way through and goes on to write about how holiness plays out, demonstrated in a right relationship with God and a right relationship with others. He even deals with our reaction and response to suffering and disagreements. He even fleshes out that holiness is demonstrated in honorable conduct toward those who persecute us and in subjection to government! (2:11-20).

When our marriage goes south, we question if we married the right one. When our church has infighting, we question if we joined the right one. When our denomination fights and splinters, we wonder if we are in the right one. But we never question if our expectations and views of marriage, church, denominations, job, family, etc. are wrong! Maybe we are expecting fulfillment from these institutions that we can only find in Christ. Just as Gary says about marriage, maybe we are expecting these institutions to give us something they were never designed to give. We want identity from our denomination. We want religious fulfillment from our congregation. We want perfect love and acceptance from our family. But these institutions cannot fulfill these desires to the extent and perfection Christ can. He fulfills our identity, religion, love and acceptance. Thus, Peter wrote:

Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind. Do not repay evil for evil or reviling for reviling, but on the contrary, bless, for to this you were called, that you may obtain a blessing. For "whoever desires to love life and see good days, let him keep his tongue from evil and his lips from speaking deceit; let him turn away from evil and do good; let him seek peace and pursue it. For the eyes of the Lord are on the righteous, and his ears open to their prayer. But the face of the Lord is against those who do evil. (1 Peter 3:8-12 ESV)

Maybe those struggles in our marriage, church, denomination, job etc. were designed to make us holy. Maybe those struggles are opportunities to BE holy! Maybe on the other side of that opportunity lies something greater than happiness; maybe there is a joy set before us!

Osama bin Laden Deserves a Special Place in Hell...and so do I

2011-05-03T09:08:00.000-04:00

The news of Osama bin Laden's death brought mixed emotions. In one way, it brought a feeling that something had finally come to an end, though terrorism is still a threat. In another way, the anger over what happened on 9/11 and price our military has paid in the subsequent wars found a bit of satisfaction. But as I watched the reaction in the media and online, I also got a bit uneasy.

Many are celebrating bin Laden's death. Some are declaring and celebrating his newfound home in Hell. Some are wishing his death had been slower and agonizing. I understand these feelings as they, in part, have been in me as well. I think of how I would feel if someone kidnapped and killed my son. Every fiber in me as a father would want to hunt that person down and find creative ways to make them suffer before they died. I hope I never find myself in such a situation, fighting to keep such feelings from becoming action. I'm sure those who lost family in 9/11 and resulting wars have struggled with such feelings.

As a follower of Christ, I want to know how I should react to this day when our nation's enemy has been vanquished. Here is the hard part. Jesus said in what we call the "Sermon on the Mount," that we should turn the other cheek, go the extra mile and "love our enemy and pray for those who persecute you." (Matt 5:38-48) The very thought of loving bin Laden feels atrocious. To pray for him and not pray for his demise, torture, and a quick trip to Hell, is difficult to say the least. How can we do this? I am finding it is possible through Him who strengthens me because He gave us what we need to do so, namely grace, truth, and love.

First of all, grace. God extends grace to all humans on some level. Jesus said we should love and pray for our enemies SO that we may be the sons of our Father who is in heaven, who makes the sun rise on the righteous and unrighteous and the rain fall on the righteous and unrighteous. What reward do we have if we only love those who love us? God extends grace to the unrighteous (those who don't love Him) by allowing them to continue to exist and have opportunities to come to know Him through Christ. It is easy to forget that we all are partakers of that grace as we have all fallen short of God's glory and deserve justice for our own sin. No doubt Osama bin Laden deserves a special place in Hell...but so do I! We all contribute to the evil of this world and we all have dishonored a holy God. It is an act of God's grace that any of us exist! God is merciful and slow to anger, abounding in love allowing us the opportunity before we die to come to salvation through Jesus Christ by what He did for us on the cross. But we have to come to the cross! There we discover grace fully and see the justice we deserve is satisfied in what Christ did. Then we not only are allowed to exist, but live forever in a relationship with Him!

This is the truth that also helps and strengthens us. Further, we see the practical side of God's grace played out in our world. Paul wrote in Romans 13 that God has appointed governments and gives authority for such so that justice can be enacted in our world. In no way does this text mean that God condones every government decision. It simply means God has graciously given humans the means to establish government to enforce right behavior and punish law breakers. It means governments are ultimately accountable to God and those in government will have to answer for their choices just as pastors and teachers in the Church must answer for what they teach. This helps us see that what happened to bin Laden was rightfully carried out by our government under the authority God allowed it to have. Thank you to our soldiers who are willing to carry that sword of justice and we need to pray for them and their families as they carry that burden. It means we should never cease to pray for our President and leaders so they will make God-honoring decisions. Sometimes, the only way temporary peace can be found in our world is on the other side of war. That is an unfortunate reality of our fallen world. We can thank God for deliverance from our enemies, even if it had to be done through war, but it does not mean we have to hate our enemy. It does not mean we have to enjoy their suffering as they enjoyed ours. If we enjoy theirs, then we have become our enemy. Hate does not defeat hate.

Finally, we can take comfort that there is an ultimate justice in God. Ultimately, we all give an account of ourselves before Him as every knee shall bow and every tongue confess to God. Osama must give this account. I must give this account. We all must. In the meantime, let us celebrate that partial justice has come and that full justice is to come. Let us celebrate that if we belong to Christ, that full justice is satisfied and that is how we can truly begin to understand grace and love. Knowing that God is just is the only way to truly see how amazing His love is at the cross. God shows His love for us in that while we were still sinners, Christ died for us. We didn't earn it. He gave it freely. Have you received this gift?

In no way do I intend to tell anyone how to feel about this. There are people who have been directly affected by these tragedies. But our emotions do not erase truth. Our family's tragedy has taught me this. Let us pray for our nation and world and that as many as possible will find the ultimate peace in Christ.

Extra! Extra!

2011-05-01T16:55:00.000-04:00

So, my hometown paper, the Aiken Standard, did a story on the book The Lord Struck the Child. It was great and surprising that it made the front page!! The full story can be read here! Thanks to Michael Gibbons for doing the article and hope folks will find the book, be blessed by reading it and bless others by purchasing it.

Part of Me

2011-04-26T09:02:00.000-04:00

The year is flying by. I suddenly realized the other day that May is fast approaching. That means May 22 is coming. That was the day Macayla was born and that was the day Macayla went Home. Nine years. In some ways it feels like a dream that we have woken from but the residual of its emotions remain. Other times it is all too fresh and real. There are times, more often now than before, that the memories are sweet and bring a smile to our hearts. But May 22 is such a mixture of dread, pain, love and hope.

I dread that we will have to walk through that day. Less than a month away and it brings pain already. But there is such love that stirs there too. Love for our girl who smiled when we couldn't and laughed in the midst of a hard road. Love for our girl who drew us and others closer to Christ. Love for our girl and her dry wit, a love for her brother, a love for music, a love for dogs, horses and cats. But there is hope also. As of May 22, we will have made it a year. We will have traveled this trail of grief for a year and survived. Hope because our girl is no longer in pain, but quite to the contrary, she is whole and full. She is in the presence of our Lord and if we could see what she sees and fully know what she knows now, we would be throwing a party.

Part of me wants to skip May 22. Part of me wants to hide on May 22. Part of me wants to celebrate on May 22. Part of me rejoices and part of me aches.

The Whirlwind of...Everything

2011-04-20T09:25:00.000-04:00

My son asked if I had ever thought of living in an early time of history, like the first century and if it would have been better. It made me think about how full of distractions our lives are. We live in a whirlwind of digital and graphic information constantly bombarding us with noise, words, and ideas. So, I thought, why not add a little post about overcoming this problem. My phone just rang and pulled me away from writing this. While in that conversation, I realized I had not eaten breakfast and so I pulled out a bowl and milk for some cereal. However, the conversation went longer than expected and I never actually poured the cereal in the bowl. After hanging up, I came back to the laptop to finish this post, realizing as I sifted through images to add to it that I left the milk sitting out on the counter and I had not eaten anything. I also have to hurry up and finish so I can run to the paint store and get the stain to finish the second coat on our deck. Looks like a few more tweets, emails and facebook responses just came in too.

We live in a very distracted world. We get so busy with emails, phone calls, bills, work, television, radio, and stuff that it is easy to just exist and allow the important things to slip out of focus. My sister suggested that iPads and such were part of a conspiracy by those with ADD to make everyone else ADD and level the playing field! Blogs are no different. We stick links in our post and clicking on them sends you to a whole other site and you may or may not return to the original article. All of these things stop becoming tools to accomplish greater things and consume our energy and thought. We start compartmentalizing our lives into work, home, family, money, internet, and miss the whole. We easily find ourselves adrift and lose sight of our course.

It is easy to feel as if everything is competing for our time and resources, but there is a solution if Christ is Lord of our lives. When we receive Christ as our Lord, then we are redeemed from our sin and the debt it creates with God. Just as crime creates a debt to society, sin creates a debt with God, an infinite God and thus an infinite debt. But Christ, being God and man was able to pay that debt at the cross. He was able to overcome the grave, evidenced by an empty tomb. This redemption and victory restores our relationship with our Creator. He redeemed all of me and all of you (if you believe in Him as your Lord). That means ALL of my time and resources are His! My life is no longer to be compartmentalized. How I spend my time at home, work, on the internet, with friends, etc. is to be spent His way and according to His agenda, not mine. It helps to pause and think, "Am I spending this moment in a way that is in sync with Christ's agenda and purpose for my life? Most importantly, is He glorified in it?"

What about this very moment, as you read these words? I have added one more bit of digital information to your life and taken up a couple of minutes of your time. I pray the time I spent writing it and the time you spent reading it was time spent the way Christ desired and not just extra debris in the whirlwind. It doesn't mean we are free of interruptions, but distractions and interruptions are different. God works some of the most amazing things into our lives through interruptions at times. Regardless of the season or epoch, situation or circumstance, let us walk as He walked.

By the way, another view of this can be found on Jacob's Page. No, I'm not trying to make you ADD and that is why I waited and linked it here at the end!

Being Heavenly Minded Makes us the MOST earthly Good

2011-04-18T18:28:00.002-04:00

Special Offer on a Special Story

2011-04-17T07:40:00.000-04:00

Here is the latest offer to save money on the book The Lord Struck the Child! If you already have a copy, buy one (or 2, 3, 4, 5 or so) for someone you know. Remember, every dime made above printing cost goes to a different charity each quarter. None of the money goes to me. Right now, we are supporting Camp New Hope in North Carolina. We are about 1/3 of the way to supporting a family for a week at the camp.

Reading the book will bless you, buying the book will bless others.

Resume of Rubbish

2011-04-12T20:20:00.004-04:00

It seems my American upbringing has tainted my idea of success. Our culture promotes a go-get-em attitude and positive pragmatism. If something works, it is valuable and if it doesn't work, well it should be abandoned. Unfortunately, our patience to see weather something works or not tends to be short. No doubt our can-do attitude has helped us accomplish much, but so often it tends to be the Achilles heal of my spiritual growth and ministry. When I don't see results quick enough, I wonder if I am using the right methods or if I'm on the right path.

There is a fascinating text in Paul's letter to the Philippians where he recounts his success as a Jew (3:1-11). As far as what was important to first century Hebrew culture, Paul was a success. He was a pureblood Jew, a Hebrew of Hebrews and unmatched in zeal as a Pharisee. Our culture measures success in other ways, but Paul would be like the published author, mega-church pastor, or wealthy business man of our day. But Paul says he lost all of this success for the sake of Christ. Would a mega-church pastor say to the congregation, "I must walk away from this position to gain Christ"? Would we walk away from a lucrative business deal to gain Christ? Paul says he did walk away from this success and agenda. In fact, he refers to this success as "rubbish."

Just so we understand the force of Paul's statement, we need to know that our English translation of "rubbish" does not carry the Greek meaning well. According to those who know Koine Greek better than me, if a pastor today were to utter the English equivalent from the pulpit, people would demand that pastor's resignation. Think of a crass word for "dung" and that is what Paul calls all his success!

Paul had a spiritual resume that would have been impressive in his culture, but the problem was he wrote that resume, not God. It is funny how people will discretely slide their spiritual resume across the table sometimes. I have been in conversations with people who are not really involved with church or any kind of discipleship and when they find out I am in ministry, they slip in a comment like, "Well, I taught Sunday School and really loved it when..." or they may say, "I really got a lot out of the small group I was part of," not revealing it had been ten years since they were part of it. We think that success as a Christian is measured by how many years we have been a Christian, taught Sunday School, or people we have helped pray "the prayer." We can list these as accomplishments on our spiritual resume and it makes us feel successful.

On the other hand, since I am not a successful pastor by our culture's standards, I can let my skewed understanding of suffering do the same thing. One afternoon a couple of years ago, I began inventorying all of the "sacrifices" we had made as a family for ministry and in the middle of it, God brought a convicting thought to mind. What had He sacrificed for me? I immediately thought of the searing pain of His scourged body before the crucifixion. The throbbing pain of the nails in His hands and feet. The suffocating weight of His own body as He hung on that tree. Worst of all, the hellish separation He experienced as He died on that cross for me...and you. He who knew no sin became sin on our behalf.

This thought was convicting and like a punch to the gut revealing the pride and self righteousness that was sneaking in to the back door of my heart and mind. But it was liberating as well. For I realized that I was defining myself according to the circumstances of my life and not according to who I was in Christ. Because I trust Christ as my Lord, I am a child of God; an heir to His kingdom! I no longer have to allow my sufferings or my successes define me. In fact, my life choices can be made in greater freedom when they are made in the knowledge of who I truly am. We often think church, home, family, and work are competing for our time and resources. Bible study is just one more thing. Tithing is one more bill. Church is one more social event. We think a 10% tithe is sacrificial living, but Christ did not carry only 10% of the cross. He did not die for 50% of my sin. He did not experience only 90% of the wrath we deserve for our sin. He died for all of my sin and redeemed all of me. How dare me give Him only a portion when He has redeemed it all!

Amazingly, Paul's first spiritual resume was full of rubbish. So, God threw it away on the road to Damascus. Paul said he lost all of this. He said he strived to know Christ and the power of His resurrection and share His sufferings in order to be like Him in His death, thus attaining His resurrection. Paul admits that he had not obtain this yet or was by any means perfect, but he strives to make it his own, because Christ had made him His own (Phil 3:10-12). Christ did not make Paul His own because of Paul's Hebrew-of-Hebrews resume. Paul was Christ's own because of the grace and love of Christ, same as it is for any of us who belong to Him. Paul's life was then lived in response to that grace and love, not to earn it for it cannot be earned. Then God began writing a new spiritual resume for Paul and one Paul could never had imagined or wrote himself. He would have never guessed that billions of people would read his letters for the next 2,000 years or that the Holy Spirit was working through him to shape our lives in 2011. Paul was successful, but it was success God designed and desired. That success was born out of Paul sharing in Christ's sufferings and becoming like Him in His death.

Are we ready to be successful, as in God's kind of successful? Are we ready to wad up our spiritual resume and let God write a new one, the right one, for us?

Get Rid of the Dys in Dysfunctional Prayer

2011-03-31T07:54:00.004-04:00

I just read a blog post provocatively titled "Why You Should Stop Praying." I think it is worth the read and makes a couple of good points worth noting, but there is some caution required here.

One great point Nicolle makes in this blog post is that we need to inform our prayer life with Scripture. I agree. Scripture shapes the way we pray and even the words we choose. That in and of itself is transformational. Often God will give me pause in my prayer and make me consider why I worded my prayer the way I did. Why did I pray, "Lord, help me be more patient?" First Corinthians 13 states, "Love is patient, love is kind..." If I am lacking patience, it is probably because I lack love. My prayer needs to be that I will surrender to the love of God more and allow it to flow through me more to those around me. Patience is a by-product of love.

One thing I often notice is lacking in discussions about prayer is God's sovereignty. We know the verses that speak of prayer's power and effectiveness, but this does not mean the power rest in us or is from us; the power of prayer finds its source in God. Prayer is in fact a mysterious process where God includes us in His works not only on the physical plane, but on a plane that is unseen. It is as real as the air I am breathing and the buttons my fingers are pounding right now; actually it is more real! Our prayers are meant to change us, not God. They avail much in how they transform us. Unfortunately, there is a tendency for us to judge the availing power and effectiveness of prayer by how much circumstances change. If the circumstances change to match the way we prayed, then we assume that prayer was effective. If the circumstances do not change to match our prayer, then we assume the prayer failed, was weak or we were mistaken. Prayer is not pragmatic by our standards; prayer is so much more than that!

Certainly, we can pray with faith for change and change will come. But just because we pray for healing and the healing does not come, it is not prima facia evidence that we lacked faith or that our prayer was ineffective. Prayer impacts in ways we do not always see or fully understand. It's not just about the results we can measure. So, we must be sure we are praying in His Name, i.e. according to His character and will. Our selfishness and ego can taint our view of that and subsequently our prayers. God leads us to pray and pray the way He wants and brings the results He wants. One of those results is that we sync with His will and plan, specifically and generally. I think we must guard ourselves against two extremes. One extreme is to lack faith in the power of prayer and simply think of it as something on the spiritual to-do list. The other extreme gives us all the glory and credit for answered prayer and its power, forgetting glory and power belong to God alone.

Therefore, let us pray with an open heart and mind to God's direction, carefully listening to the words we choose, noticing the things we pray for and why, and continually being shaped by Scripture. When we pray, we are not on the throne wielding power from on high. No, we are going before the throne of the One who does. Thus, praying in the kneeling position, though not required, is a great reminder of where the power of prayer comes from and who is in charge.

Connecting with Easter

2011-03-23T16:06:00.005-04:00

Our son, Jacob, is excited about Easter a month ahead of time. Not because of a bunny, eggs or candy. He is excited about a sedar meal! Yes, my son, a seven year old, is excited about a Jewish tradition which we have modified to celebrate Easter weekend.

So, let me get this out of the way. Yes, I am a nerd! But this time, the nerdiness paid off! I was trying to figure out a way for Easter to become more exciting than Christmas for our kids. Our culture has made this extremely difficult. What developed in our house was that we built a tomb and found a crucifix with a removable figurine of Jesus. On Good Friday, the cross is up with Jesus on it until that evening, when he is taken off, wrapped in a cloth and left in the tomb until Sunday morning. Of course, when our son goes to find Jesus in the tomb, he is gone and then he has to search for a "risen" Christ figurine some where in the house. You can see more in this post from before.

But we also added the sedar meal and modified it to be meaningful to Jacob and this morning he was already talking about the rice krispie treat pyramid and finding the hidden bread. He wants to hide bread for Mom and Dad to find this year. He is looking forward to dipping vegetables in salt water (symbolic of the Red Sea and the tears of the Hebrew slaves in Egypt) and cracking the hard-boiled egg (symbolic of our and Pharaoh's hard heart that is softened by Christ) The meal tells the story of both the Passover in Egypt and the "Passover" at the cross. It tells of the salvation at the Red Sea and the tomb. But we want to make the celebration of these things connect even better.

What other suggestions do you have to make the week of Easter more fun, spiritually educational and point us and our children toward the wonderful message of new life in Christ?

Was God Wringing His Hands?

2011-03-19T19:11:00.003-04:00

Today I read a blog of a family who has been trying to figure out what is wrong with their child for two and half years. Her symptoms have not clued doctors in to what is happening and she suffers so much. The parents are praying, of course and doing all they can to get some answers.

The pain of the unknown is difficult when it comes to your child's suffering. We were fortunate that it only took us eight months to get a diagnosis for Macayla. Of course we hated the diagnosis, but I often thought how much more difficult it would have been to walk that road 100 years ago. Macayla would have digressed much faster and actually died of starvation since there were no feeding tubes back then. There would have been no medical answer as to why this was happening. So many families all over the world today experience this all the time.

In light of my last post, this got me thinking about Macayla's last day with us. Someone mentioned that they heard people were praying Macayla would pull through while others were praying for a peaceful passing. They said something to the effect, "We have to get everyone on the same page so this girl can go home!" This comment brings up a crucial point in our understanding of God and His sovereignty. Was God in heaven wringing His hands over what to do?

Did God say, "Some are asking Me to bring Macayla home, others are asking Me to let her stay; what Am I to do?"

I don't think God was confused one bit on how to answer those prayers. I also know that God is fully aware of the wonderful love and intentions of people and their prayers for us and Macayla. Like the family mentioned above, we also received advice during Macayla's fight with Battens disease to anoint her with oil and pray over her, laying hands on her, for healing. I often asked since I was already praying for her healing, "Will that oil suddenly make my prayers audible to God?" The point is, like in my last post, there are times when godly people give seemingly contradictory counsel or pray in contradictory ways over the same circumstance. We forget that prayer changes us, not God. Prayer has impact and "the prayer of a righteous person has much strength as it is working." (James 5:16 ESV) I think this translation of the Greek carries the clearest understanding in this case. It is not a magic formula of prayer + righteous person = prayer answered the way I want. It is simply that our prayers, when offered up righteously, have much impact and that impact may manifest in a way we did not expect.

I pray for this family to get answers and healing. I pray their precious little girl will be free from her suffering. That is my prayer and I must trust God to answer it in His way, not mine. There is nothing wrong with my prayer and I believe it is in God's will for me to pray these things as it was for me and others to pray them for Macayla. But Macayla's death is not evidence that those prayers were wrong or uttered by unrighteous people. Those who prayed for Macayla to pull through knew there was a God in heaven who could do just that. Those who prayed for a peaceful passing knew the same. But all who prayed were changed in some way and to some degree by their prayers. That in and of itself is powerful and of great strength. Pray for this family too. Those prayers will have impact on both them and us if we all stay tuned and see what happens.

The Counsel of Others - God's Will Part II

2011-03-14T08:10:00.003-04:00

As stated in the previous post, we are seeking God's will in the midst of multiple decisions. The major decisions being the move to New Orleans and adoption. Paul wrote of God's will in his letter to the Romans, but what experience did he have in this area? How did Paul's discernment of God's will develop? The Holy Spirit used Paul and his experiences to write this letter, so certainly it would be helpful to know a little more of his background.

In Acts 19-21, we get a glimpse into part of that experience and background. Paul was on his third missionary journey and while in Ephesus, the text says, "Paul resolved in the Spirit to pass through Macedonia and Achaia and go to Jerusalem, saying, 'After I have been there, I must also see Rome.'" (Acts 19:21) Then in Acts 20:22-23 Paul is recorded as saying, "And now behold, I am going to Jerusalem, constrained by the Spirit, not knowing what will happen to me there, except that the Holy Spirit testifies to me in every city that imprisonment and afflictions await me." So Paul is clearly saying that God's Spirit is leading him to go to Jerusalem and that tribulation awaits him there. At this we are either impressed with Paul's faithfulness or we question his intelligence.

But as his journey continues, Paul makes two more stops that seem to complicate this clear calling on his life. In Tyre, Paul meets up with more Christians who "through the Spirit were telling Paul not to go on to Jerusalem" (Acts 21:4) and in Caesarea the Christians tell Paul the same after they hear the prophecy of a man named Agabus who foretells of Paul's afflictions in Jerusalem (Acts 21:7-12). So which is it? Paul says the Spirit it telling him to go to Jerusalem while other Christians are saying "through the Spirit" that Paul should not go.

I am thankful this a rare situation in Scripture and in life, but it does happen. All of us who follow Christ have the same Spirit abiding in us. The Spirit can simultaneously make many of us aware of a need or give us discernment about a situation. However, we may respond differently to that illumination than our brother or sister in Christ. The differences in our response can be due to our maturity level in Christ or our experience. Paul's friends in Tyre and Caesarea knew through the Spirit just like Paul that imprisonment awaited him in Jerusalem. Certainly this is bad news. When we discern something bad is coming, we want to avert or avoid it. Paul did too, however he knew there were greater things at stake than momentary discomfort, prison or even death. Paul knew his life would be given for the sake of the Gospel and it would have impact only God could orchestrate (Acts 21:13). We should not minimize the difficulty this presented for Paul. It was "breaking his heart." He knew the pleading he was hearing from fellow believers was not random but was through the Spirit. He also knew through the Spirit he had to go. How torn he felt!

He was torn just like Christ was in the Garden of Gethsemane. The human will of Christ dreaded the pain and abandonment that awaited Him at the cross, but the divine will of Christ knew the redemption and the joy set before Him. Just as Jesus said, "Not my will, but Your will be done," so the believers at Caesarea too said, "Let the will of the Lord be done" (Acts 21:14). Sometimes, God calls us to difficult, even deadly, assignments. Our fellow believers may sense the danger and give counsel to avoid it. We want to avoid it as well. Thus, these are the most difficult assignments to keep. But ultimately the Holy Spirit can have the last word through The Word. We may get conflicting counsel from solid believers and that can give us pause as it should, but Christ, not other believers must have the final say in our decision. So, we must take much care when we speak counsel into the life of a sibling in Christ. We must do it with humility and patience, remembering that ultimately it is not our will, but the Lord's that must be done. Paul's discernment of God's will was developed at a deep and mature level. I pray for such maturity, then again I am not sure I want to pay the price. May the Lord's will be done.

The Will of God

2011-02-28T07:54:00.005-05:00

Knowing God's will seems tricky sometimes. Many believers find themselves wondering what God's will is for their lives. Sometimes the question is about our life's calling and at other times it is about a decision or set of decisions. For us, it is about adoption, seminary, finances, etc. There is a highly quoted portion of Scripture often used at such times. Romans 12:1-2. The Holy Spirit reminds us through Paul to be a "living sacrifice, holy and acceptable to God." This is a lifestyle, a life, which itself becomes worship with every choice. Further, Paul wrote we are not to be conformed to the world, but be transformed by the renewal of our mind. Then we can discern the will of God, "what is good, acceptable and perfect." He did not say we are to rely on sincerity or feel-good self-talk. We are to use our brains.

However, in the midst of trying to discern the next step along the path, the lamp of God's word can seem dim to us. But I submit that it is not because the lamp has lost any lumens. It is because we are walking through the dark, maybe even using the lamp of God's word to light the way, but all the while we wear dark sunglasses of pride. Because of this it helps to remember what was written before and after Romans 12:1-2. The general context is salvation, for both Israel and Gentiles. For many who knew that Israel is God's chosen people, Paul began to unravel the mystery of why they rejected the Messiah while Gentiles received Him. In Romans 11:25 and following, Paul states, "Lest you be wise in your own sight, I want you to understand this mystery..." In short, Paul reminds us that God's ways, knowledge and wisdom are unsearchable and inscrutable. In other words, God's plan is His plan, not ours. God brings even Gentiles into His fold and this was hard to understand for "good" Jews like Paul.

Paul says God's ways are of such depth we cannot fully understand them, yet he immediately turns around and says for us to renew our minds and know the will of God! Seems quite difficult. But I believe the key point here is the transformation. When we become a living sacrifice, we are surrendering to the Lordship of Christ. In that surrender, we are transformed by Him. Only with a mind transformed and renewed by Christ can we really begin to recognize the sunglasses of pride on our face. This is why Paul immediately writes about how this plays out within this new community of Jews and Gentiles: "For by the grace given to me I say to everyone among you not to think of himself more highly than he ought to think, but to think with sober judgment, each according to the measure of faith that God has assigned." (see Romans 12:3 and following)

Right now, our family is praying through multiple decisions. Adoptive children come with needs of healing from their past. Are we healed enough from our past to help a child heal from theirs? We must pray repeatedly, because in that prayer-time God first reveals the shades of pride that obfuscate the light of His word. As we peel those off, He renews our mind. Then, with sober judgment we can make decisions with the measure of faith God has assigned us. God's plan is never revealed in its entirety to us. But His will for the next step becomes visible as long as, through surrender, we remove the sunglasses. As one friend said in our Bible Fellowship Group, "The problem with living sacrifices is that they try to crawl off the altar." I pray we will stay on that altar, renew our mind and see the next step by the light of His Word.

The Lord Struck the Child

2011-02-17T17:29:00.002-05:00

O.k. This seems a bit strange to me. I have written a book and it is for sale. I wish I could just give it away, but for some reason, printing cost money. I am using a print-on-demand publisher for now, but it is not vanity that drives this project.

So, I've decided that since it will cost money we might as well let the money go toward something good. Each quarter, all of the proceeds will go to a different organization. My plan is for the money to help ministries and charities who help orphans, special-needs, or carry the Gospel to the world around us. I know that the amounts will probably not be very much right now, but if we get the word out through social networks and by word of mouth, then obviously more will follow. I am in the process of having it distributed to Amazon.com and Barnes and Nobel.com. I also hope to have an ebook version for sale on iBooks soon.

There is another way this can grow. If we can sell enough copies, then it will demonstrate to a larger publisher and distributer this project would be less of a risk for them to take on. Then even more copies could go out and hopefully generate more revenue to spread the Gospel and help the "least of these." My intention is not to get rich or famous from a book, which is hard to do anyway. It is simply to share what Christ has done in our life as a family. This was just the most efficient way and hopefully it will impact others beyond our immediate reach. Some of the ministries we hope to reach are Camp New Hope, Miracle Hill, Haven of Rest, Family Connection SC, BDSRA, Missionaries, and several others. We want to rotate to a new ministry every quarter. So, if this is going to be successful, get the word out.

By clicking on the book to the right, you should be able to go straight to where it is sold and preview the first few pages. I hope this book blesses anyone who reads it.

June 1, 1996

2011-02-14T06:22:00.002-05:00

I was a groomsman. The wedding was in the chapel on the Citadel campus in Charleston. I was friends with both the bride and groom as we were all from the same hometown. My chief complaint was that the bride had no available women in the wedding party! All of the bridesmaids were either married or about to be. But just as the ceremony finished and the bride and groom exited the chapel under arched swords, a friend who was aware of my complaint, brought a beautiful woman over to meet me. This woman had not even planned to go to the reception, but she did and we danced. I knew I was going to marry her at that moment! Of course, anytime you dance to the "Chicken Song" as your first dance, you are going to get married!

I am so thankful Jennifer went to that reception. I'm so thankful she dated me in spite of me being me. I'm so thankful she married me. We have celebrated 14 valentines together, 12 of them married. Thank You, Lord, for putting us together.

Jesus Burped, Thus All of Me Belongs to Him!

2011-02-03T09:29:00.007-05:00

John 1 shares with us the truth that Jesus is eternal and fully God, yet God became flesh and dwelt among us. The incarnation is certainly a brain-scrambler as it means Jesus was 100% God AND 100% human. He was not some mixture of divine and human where the divine part plus the human part equals the 100%.

For centuries, art has depicted Jesus in multiple ways. I remember the stain-glass portrait of Jesus in the Garden of Gethsemane. It was located in the narthex of our church where I grew up. There was the Lord, looking caucasian, calm, hands folded as He stared up into the heavenly glow shining down upon His sweat-free, tear-free face. Not the picture of anxiety, sweat, stress and blood we read of in Scripture. Ancient art depicts Jesus and the apostles in flat, two-demensional expressions with ornate dinner plates behind their heads meant to represent their "halos." Contemporary art often focuses more on the humanity of Christ, as He joyfully plays with children in a flowery meadow or lets them pull His beard and long hair as they sit on His lap. Jesus obviously had long hair, right?

It is difficult. We either keep our focus on Jesus being God and lose sight of His humanity or vice versa. But it is essential to remember He is the God-Man. Just as a crime creates a debt to society, our sin creates a debt to God. This debt is infinite because it is to an infinite God. Needless to say, we are not capable of paying this debt; only God can. But He does not owe it. So, the only one who can pay the debt is God and the one who owes the debt is humanity. That is why God became flesh and dwelt among us. He lived a life free of sin. His humanity always submitted to His divinity, but it was by choice.

We may think Jesus had an unfair advantage at resisting sin. He is God and God cannot be tempted after all. But He was fully flesh, fully human. He assumed everything about our humanity. So, He was tempted in every way we are, and beyond because we cave in so quickly. He was truly tempted in the wilderness, the Garden of Gethsemane and at the cross on a level we cannot imagine. Yet, He did not sin. He assumed our humanity so He could save us. If He did not assume it, it is not saved. Thus, He felt pain, anger, love, stress, exhaustion, happiness and fun. He ate food, burped, slept, cried, got cold and tired. Because He assumed all of our humanity, all of me is saved! He assumed 100% and saved 100%. Why do I feel like I am "really" sacrificing when I give a tithe of 10% or less? Jesus did not assume just 10% of humanity. He did not die for just 40% of my sins. He did not bear just 90% of the cross. He bore all of the cross and all of the wrath my sins deserve. As His follower, He is not interested in portions of my time, talent and treasure, He wants all of me.

I Want a Spotlight, Not a Lamp

2011-01-25T09:54:00.003-05:00

Psalm 119 is a long poem about God's Word. The 105th verse of this Psalm says that God's Word is a "lamp unto my feet." Having a lamp to light our way in the dark is helpful. However, oil burning lamps of the psalmist's day gave off just enough ambient light to show you the next step. They did not give enough light to show you the next mile of path and all its opportunities, obstacles or barriers.

If it were up to me, I would have wanted God to make His word a 30 million candle power spotlight, mounted ten feet over my head and pointed down the path He wants me to take. Oh, and maybe a few floodlights pointed to the left and right so that I can see what is along each side of the trail as well. I would also add radar with a heads-up display warning me of problems ahead and opportunities to not miss. I put these ideas into the suggestion box of heaven, but have not seen any changes yet. I'll let you know if I do.

In the meantime, our family is facing decisions that would sure be a lot easier if we could see further down the path right now. We know God is calling us to return to New Orleans for seminary. We also know God is calling us to adopt a child. However, the timing is interesting and seems to conflict. If we start the adoption process here, at least through DSS, then we will have to most likely postpone going back to New Orleans until next year. Of course, if our house does not sell this year, then we will be waiting to go back anyway. I am o.k. with putting seminary off for another year for the sake of a child, but I want to be sure we are being faithful to our calling. It feels like we are trying to walk two separate paths and hoping they will soon merge into one. This is where a spotlight instead of a lamp would be helpful.

But the point is for us to take the next step. Maybe we will be adopting and then moving. Maybe we will be moving and then adopting in Louisiana. Maybe God will orchestrate both to happen this year. But we have to take the next step. So we are prayerfully doing so. Adoption is an amazing opportunity and gift. I submit that if you are a believer in Christ, then adoption is something we cannot ignore. It does not mean you have to adopt a child yourself, but it means we are to take care of those who cannot care for themselves. We get to reflect the Gospel in this way as we could not save ourselves, but Christ had to save us. We know that these children are made in the image of God and therefore are valuable. For more on why we must do this, check out the book Adopted for Life by Russell D. Moore and the website reflections of the Father. They offer perspective and resources. Let us all pray for wisdom and courage to do what God has called us to do and be faithful in whatever capacity He determines.

By the way, Jacob is beside himself with anticipation of having another brother(s) or sister(s). He is praying hard!

Difficult Christmas

2010-12-24T04:22:00.002-05:00

The "firsts" are difficult. The first Thanksgiving, the first Christmas, the first birthday without a loved one is rough. I usually do not like getting all the Christmas decorations out of the attic and putting them up anyway, but I really did not like it this year. So many ornaments were made by or for Macayla. Just trying to decide if we should hang her stocking or not was tough. We did not have to shop for any presents for her. She will not be here in the morning to see (or more recently, hear) the gifts being unwrapped. It stinks.

But we often forget how difficult the very first Christmas was for Mary and Joseph. Mary started her pregnancy out of wedlock, which would have made her a target for ridicule, if not stoning. While pregnant, she had to travel approximately 100 miles on donkey over rough terrain to make it to Bethlehem for the census. Some critics say the Bethlehem story was added by Matthew and Luke to bolster the idea that Jesus fulfilled prophecy. They claim a pregnant woman would not have taken a chance traveling like that as it could be very dangerous. They ignore the fact that staying where she was could prove to be dangerous as people may pelt her with stones for what they perceived as adultery! Childbirth is a hard and dangerous process we take for granted more than they did. There was no NICU or emergency OR to save mom and baby from complications. In fact, Jennifer would not have survived Macayla's delivery 100 years ago. Mary faced these dangers and public humiliation. Had it not been for angelic intervention, Joseph would have abandoned her.

Their journey was full of hardship and potential disaster. What would have been a two hour car ride for us, lasted several days for them, and possibly longer if Joseph had to stop along the way and work to finance their journey. Once they reached Bethlehem, there was not a comfortable hospital suite to deliver Jesus. There was no vacation home or condo in which to stay. No, they had to first stay in the place where animals were kept. Not the warm, country barn type stable we typically picture, but probably a place akin to a dugout basement or cave. They were poor and faced quite a bit of peril that first Christmas. Even after Jesus' birth, the Magi later came and we see that King Herod had plans to kill all the male toddlers to prevent another king from rising up and taking the throne from his heirs.

How often we complain about the little things of Christmas! The crowds, the wrapping, the decorating, the travel, etc. But celebrating Christmas with a gaping hole in your family puts that stuff in perspective. Seeing how the Savior came into the world also puts it in perspective. This was no cute nativity scene, but a harsh and dangerous entry into the world. God became flesh and dwelt among us in poverty, pain and persecution, not a palace. He is not aloof to our situations, but has identified with them fully. He knows what it is like to go through those firsts without a loved one. He even provided the first and only Christmas that led to the first and only Easter. Now we get to celebrate them each year.

Merry Christmas!

Camp New Hope 2010

2010-11-29T18:44:00.007-05:00

Last week, we went back to Camp New Hope. This was our forth year going there and the first time we have been in the Fall. It was the first time going without Macayla. It was beautiful and difficult at the same time. The camp has a Garden of Hope, which is under construction, and it has a stone bench in it dedicated to Macayla.

It is hard to know how to feel about some things. Sometimes it is hard to identify the feelings you have. But Macayla loved that mountain and we are so glad she got to be on it so often. As hard as the week was, we found time to laugh, remember and make new memories.

Part of those memories include a family we met there. Sadie and her family spent the week there and we were fortunate to share time with them. Sadie has been diagnosed with a rare genetic disorder called Aicardi-Goutieres Syndrome. It prevented her from developing on many levels but she was very aware of what was happening around her. She loves the sound of the zipper on her feeding pump's backpack. She would laugh so hard she couldn't breathe! She loved spinning in an office chair and riding on the Kubota rough-terrain vehicle. Jennifer and I got to hold her and it was good therapy for us. Sadie blessed us.

Jacob made friends with Sadie's brother, Sam, and they had fun playing games and fishing. Lily met her twin at the camp, a dog named Moe. We kept getting the two of them confused and had to make sure we were bringing home the correct dog!

As for Camp New Hope, they are feeling the economic pinch like many people and need financial support. The cabin needs some renovations to make the bathroom and kitchen accessible for wheelchairs and special-needs equipment. The renovation they have planned will cost around $60,000. The ongoing cost of hosting a family for a week is approximately $600. Donations of any size are tax deductible. What a unique Christmas gift to give! Your donation will contribute to helping over 40 families a year have a unique and amazing experience they could not have otherwise. Check out their site and donations can be done online.

Macayla's Soundtrack

2010-11-15T19:47:00.002-05:00

Shortly after Mac went home, I compiled some songs to use in some home videos. These songs were meaningful to us and to Macayla. The CD is in Jennifer's car, which I happen to be driving today. I listened to it.

The "Bare Necessities" from Disney's Jungle Book was on there as was "Hakuna Matata" from The Lion King. Macayla loved those movies and those songs. Even after she was immobile, I would help her dance to these songs by moving her hands to the rhythm (which was not too good considering I have no rhythm!) But she would smile so big. I miss dancing with my girl.

Another song on there is "Held" by Natalie Grant. It is from her 2005 Awaken CD. The lyrics to this song are about situations like ours and what it means for believers. One line always jumps out at me:

If hope is born of suffering;

If this is only the beginning,

Can we not wait for one hour

Watching for our Savior?

It always brings the picture to mind of Jesus in the Garden of Gethsemane asking His disciples to keep watch while He prayed. They kept falling asleep while Jesus agonized over what was coming. He asked them, "So, you men could not keep watch with Me for one hour? Keep watching and praying that you may not enter into temptation; the spirit is willing but the flesh is weak." (Mt. 26:40-41) They kept falling asleep as Jesus grieved over what was to come. The hope of salvation was about to be born in Christ's suffering and they slept. Jesus' prayer was the beginning of His suffering for our sin. It was the beginning of the Easter story that brings eternal life to those who believe and confess Christ as their Lord. But the disciples slept.

Certainly, Macayla's death was the beginning of eternity for her. Our lives on earth are but blips on a screen compared to the eternity we will face. Christ was very clear on this point. We either face an eternity with Him or an eternity separated from Him. His blood spilt on the cross atones for our sins, the sins that separate us from God. The suffering on the cross was a literal Hell on earth, yet so many of us let this reality slip past us as if we are asleep. Jesus' death and resurrection offers forgiveness and restoration, yet we sleep through this truth as well. We do not have to wait until our death bed to experience the eternity we are headed for. With Christ we can get tastes of heaven on earth, a preview of the glory that is to come, yet we sleep through this too. All too often I am so wrapped up in my circumstances that I sleep through the greater reality and truth of Christ.

Macayla's soundtrack reminded me to stay awake and pray. Keep watch for what my Savior is doing in my life and what He is calling me to do. It is bittersweet to listen to her music and remember her smiles and dancing. It is hard to say "Hakuna Matata" or "It Is Well with My Soul." But Macayla and her life had the "Fingerprints of God" all over them as she lived a "Life Less Ordinary." On hard days, I have to remember that God "Led Me" and so "I Will Praise [Him] in this Storm." When my blip of a life is over and enter eternity, Macayla will be there. We will see the abundant life Christ gave us, far beyond just the "Bare Necessities!" We will see that in our worst suffering on earth, we were indeed "Held" by nail-scared hands.

The Continuous Love of God in Pain

2010-10-26T08:41:00.005-04:00

You can have a mixture of comfort and fear if you read the eleventh chapter of John's Gospel. It is the story where Mary and Martha's brother, Lazarus, became ill. They sent word to Jesus who was at a distance. This story can stir up fear because upon hearing the news, Jesus did not come to Lazarus. He did not heal him. He purposefully waited for two days after receiving the news before taking action. As a result, Lazarus died from his illness. We don't like a God who would do that. We want a God who will jump into action and save the day!

Upon hearing the report of Lazarus' illness, Jesus responded, "This sickness is not to end in death, but for the glory of God, so that the Son of God may be glorified by it." Yet, as we read on, Lazarus died. Now, for those familiar with the story, we know that Jesus showed up after Lazarus had been buried and Jesus raised him from the dead. That's amazing, of course, but experience tells us that Jesus does not perform this miracle very often. It is even a rare occurrence in the Bible. So, this makes us uneasy about God. He is not a tame God. We cannot compel Him to do things our way and in our time of need, that makes it hard to know from where our comfort will come. Jesus said this illness would be for the glory of God and for His glory. But if we are honest, we just want our loved one healed. We are less interested in honoring God. We just want Jesus to save the day...right now...in our way.

But John includes something interesting in the original language. Right after Jesus declares this will result in God's glory, John wrote, "Now Jesus loved Martha and her sister and Lazarus. So, when He heard that he [Lazarus] was sick, He then stayed two days longer in that place where He was." (John 11:5-6 NASB) John did not have to include the line, "Now Jesus loved Martha and her sister and Lazarus." He could have just reported that Jesus remained where he was for two days. But there is something important in this line and it does not come through in our English translation.

In English, we are interested in when the action of a verb takes place; past, present or future. As in "I loved" or "I love" or "I will love." But the Greeks were more interested in the kind of action. Their verbs tell us if the action was ongoing and this was important to them. It needs to be important for us in this verse. When John wrote, "Now Jesus loved Martha and her sister and Lazarus," he could have used a form of the verb that would translate just "loved." But John used a tense in Greek that is reserved for continuous action. The form of the word love should really be translated, "Now Jesus was loving Martha and her sister and Lazarus. So, when He heard that he was sick, He then stayed two days longer in the place where He was."

This small difference gives us a better feel for the emphasis John is giving. Jesus was loving Martha, Mary and Lazarus in the midst of His seeming nonresponse. Jesus knew the full outcome of the situation. He knows it for ours as well. He even knows it for the people He does not raise from the tomb like Lazarus. He knows it for those He heals or does not heal. He knows the full outcome for those left behind as well. When pain and loss come, we often look to Christ as Mary and Martha did and say, "Lord, if You had been here...if you had just stepped in and intervened, then this would not have happened." Certainly, He knows this. But He knows better than any of us where the true miracle lies in our situation. He could simply fix it and sometimes He does. But maybe the greater miracle is us walking through our situation in a way that glorifies Him and leads others to Him. Maybe the greatest miracle is the change our situation will bring to our lives and the lives of others. Jesus was loving Martha, Mary and Lazarus through His delay. Is He not doing the same for His other disciples? His love is continuous and His response to His disciples' struggles, whatever that response is, will always be in that love.

Thanks to Him and to You

2010-10-18T12:16:00.005-04:00

I honestly am not sure what the direction of this blog should be now. It's been almost 5 months since our little girl was here. I miss her so much. This blog has been helpful to me and, as some have indicated, to others as well.

Macayla's story has shaped it and given an opportunity to share our experience, some information, and most of all how Christ has been at work in our lives through this. Now that she is healed, the story has turned in a new direction. Macayla - it is amazing how distant her name can feel sometimes - Macayla has taken a leap into the best story of all. Meanwhile, the rest of us look for what is next. We are not sure what lies ahead or how to even feel about going there without her. It just hurts.

The last thing I want this blog to turn into is a chronicle of grief. It is just hard to write about Macayla without acknowledging the pain. This blog has followed our journey, and the journey has come to where we knew it would, though we pleaded and prayed for something different. Christ is still at work in our lives, of course. He has provided comfort in amazing ways and He has illuminated our hearts and minds to His truth in the midst of this. We wonder if we could have learned this truth another way. I think we could. I wish we had, but this is the way it happened. "What if..." and "If only..." are the enemy here.

I will pray about the future of this blog and how or if it should continue. We cannot express adequately how much we appreciate all of you who have prayed, supported and loved on us for the last five years. I pray any and all who read this realize how awesome Christ is and how He has used you to bring comfort to us. I know that Macayla is whole again. I praise Him for that. I praise Him for working through so many people like you to take care of us. I hope you know that Macayla was born for the glory of God and that His works might be displayed in her life. I hope we can all remember we were born for the same purpose!

The All-empty gOD of Pragmatism

2010-09-23T08:05:00.003-04:00

I watch the news and see a barometer of our culture. News outlets tailor their content to attract viewers and thus advertising dollars. So, the stories they choose to cover and the way they cover them is aimed more for their viewers' entertainment than knowledge. It reflects the whims and interest of the culture at large. I heard Tom Brokaw on the Today Show give his "two cents" on the "top" stories. He is a staunch pragmatist. He was asked what he thought about Facebook's CEO giving $100 million dollars to a failing school system in New Jersey. Was it to sway public opinion in the face of criticisms and an unflattering movie about the social network? Tom's answer was that "regardless of the motives, he [Facebook's CEO] gets three cheers for putting much needed money into education."

Tom's answer reflects how many of us think and live. We often worship at the alter of pragmatism in America. We often go for the quick answer if it appears to be "what works." But case in point, why was this NJ school district failing? Is throwing money at it really the best thing to do? Is it possible this $100 million will simply fund more failure? I don't know all of the details of this situation, but our illustrious pundits in the news do not seem to be interested in the details either. Just throw money at it! Surely $100 million can fix it! This fits perfectly with our worship of the all-empty gOD of pragmatism!

Now, before you think I have jumped onto a political soapbox and violated the whole direction of this blog and website, hear me out. I only brought this up because this morning's news reminded me of how easy it is to be so pragmatic that I miss the truth. I can miss that my son's motivations count more than his performance. My motivations count more than my performance. If we let pragmatism govern the way we think and act with family, church and society, then we will be empty. When it all becomes about results, then our value is based purely on performance. Then how do we value those who cannot perform due to a disability? How do we value those who are sick? If we are less able to perform, then we are less valuable to the gOD of pragmatism and his worshipers.

But the true God values us because we were made in His image, not because of our performance. In fact, since sin has entered the world, He point blank said that we cannot earn our way to being good. We can never perform good enough to meet the true standard of good, namely being holy. We all sin. Sin is anything we think, say or do that violates God's word or breaks His heart. That's why He became flesh in Jesus Christ and died for us on the cross. He said that we could never be good enough, but God the Son is. When we trust Him as Lord and Savior, then we have His good placed on us and He gives us the grace and power to overcome our sin as we continue to follow Him. The true GOD destroys the gOD of pragmatism! We start with faith in the true God. Then our works will flow from that faith. For sure, faith without works is dead, but works without faith are empty. I pray I can stay focused on the true God and serve Him, not the shallow gOD of pragmatism. I pray I can show my son that my love for him is not based on performance, but because he is my son, made in the image of God. Pass, fail, or excel, he is valuable.

A Couple of New & Old Items

2010-09-22T20:31:00.002-04:00

I've heard from several folks that they stay tuned into the blog, but may not check out the website as often. On Macayla's page I added a video I found that is from 2006 when we went to Disney. I also updated Jacob's page.

Soon, I'll add an edited version of some video clips I found from 2007. It's amazing to see videos and pictures that have been in storage for so long.

Pain makes me a Pain!

2010-09-12T13:12:00.006-04:00

Our experiences over the past five years taught us how much we appreciate doctors who have a "big picture" perspective in their approach. Doctors who weigh familial, spiritual, and psychological factors into treatment decisions have been the better doctors for us and Macayla. Sometimes, the treatment approach and interventions have to be weighed against quality of life for not only the patient, but for the whole family. If the treatment tears down the family, this can adversely affect the patient. The doctor who knows this will prepare or at least inform the patient of the broader impact some treatments can have.

We often miss the bigger picture of what it means to be "well." I often whine and complain over headaches or soreness. Pain puts me in a bad mood. Pain makes me a pain to others. When I hurt, I tend to hurt those closest to me with short, impatient reactions. It is shameful. I think it stems from the false idea that being "well" means being comfortable and pain-free. I have grown up assuming pain and illness are the exceptions and not the norm. I think I have held a misguided perspective for too long. The fact is, we are all due for pain, illness, discomfort and even death on this planet. That is the norm. That is part of life. It sounds depressing, but there is no guarantee of happiness, riches, health or abundance on this planet. Certainly some of us are blessed with happiness and abundance, and that is where my problem lay. I have happiness, riches, health and abundance compared to a majority of the humans on this planet and I have taken it for granted. Many people on this planet face pain, death and disease on a daily, if not hourly, basis.

My biggest challenge after church Sunday was where to get lunch. I was going to pay someone to cook for me. I am certainly a wealthy person. I thank God for the blessings He has given us, but I am ashamed of how I take them for granted and hoard them to myself. I am ashamed that I complain and grumble because the line at the restaurant is longer than I would like. I am ashamed that I have let nagging headaches or a leg cramp turn me into a jerk. It is not physical symptoms that threaten my wellness. No, they reveal where the true sickness is: my heart and mind. Paul wrote, "Love is patient; love is kind," in 1 Corinthians 13. When I am impatient or unkind, it is due to a lack of love. It reveals the selfishness that disrupts relationships.

God has blessed me and my family so much, but I must remember those blessings are meant for His kingdom, not my own. Wellness is measured by more than blood pressure or cholesterol. It is measured by our relationship with Christ and others. If we are truly His, then we must put our physical pain in perspective, the perspective of the cross. Our worst day cannot compare with those six hours of the cross. He suffered infinitely more and that gives me strength to bare my pain and quit whining. Our best day cannot compare to the empty tomb. For no amount of fun or happiness here compares with the pure joy of being with Christ from now to eternity. It helps me not get swallowed in my pleasure. It helps me remember that my pain and pleasure are to be surrendered to His kingdom, not my own. That is wellness.

What We Fallback On

2010-08-30T13:04:00.004-04:00

Pressure builds. Stress swells. Life has plenty of challenges to offer. When the pressure is on we can fall into some patterns or habits as a way to cope. All of us have our fallback vices and it is so easy to go there.

This past weekend I had the privilege to teach at church on James 5:9-11 and it identified one of the quickest places we tend to fall when the pressure is on. We tend to turn on those closest to us. At the end of a stressful day, a day where we gave our best to our boss or coworkers, we can come home and give our worst to our spouse and children. When we feel the squeeze of finances falling short, we can become consumed with trying to fix, finagle and fantasize our way out of a budget crisis. I tend to over-react in the money realm. Certainly, there are things we must do on our part to be responsible. When the pressure builds, financial or otherwise, we must learn to respond and not react. We must learn to respond with trust in Christ to lead us through.

At one of these moments, I felt the stress mounting. My intellect was buzzing and my gut was churning. I went to Scripture and struggled to find a passage that helped. I know, you were expecting me to say I opened my Bible and found the perfect verse right off the bat and upon reading it, light from heaven filled the room along with the chorus of angels and everything was warm and fuzzy and I'm all better now.

No. I read several of the Psalms. I read parts of Matthew, John, Proverbs, and nothing seemed to fit or make sense. I went back to James, but my brain could not be quiet. My heartburn would not quit flaming. I finally laid my head down next to my Bible. It was open to James 5. I kept praying for wisdom. Praying for peace. Praying for clarity. I kept praying until I drifted off to sleep. By the way, don't feel bad when that happens. Every now and then, we need to crawl up in our Father's arms for a nap.

My light sleep was abruptly stopped when I heard the page of my Bible turn. I looked up and I was still the only one in the room. Now the ceiling fan was on and the draft probably turned the page. I just find it interesting how it had not even nudged a page before this moment. We must remember God can control or manipulate anything He wishes in any way He wishes. Regardless, the page was turned and there was the end of Hebrews. I read:

"Make sure your character is free from the love of money, being content with what you have; for He Himself has said, 'I will never desert you, nor will I ever forsake you,' so that we confidently say, 'The LORD is my helper, I will not be afraid. What will man do to me?' Remember those who led you, who spoke the word of God to you; and considering the result of their conduct, imitate their faith. Jesus Christ is the same yesterday and today and forever. Do not be carried away by varied and strange teachings; for it is good for the heart to be strengthened by grace, not by foods, through which those who were so occupied were not benefited." Hebrews 13:5-9 NASB

My preoccupation with the money needed some perspective. Christ is our Helper and will not forsake us. He has provided everything we have needed and I have no reason to doubt our future needs will not be met. We must do our part to be responsible and shave the budget where we need to. But when this letter was written, there were people participating in rituals and worshiping gods with food among other things. They worshiped idols. But there are so many Christians who have gone before us and endured so much worse circumstances than us and have come out blessed. Not materially blessed necessarily, but rewarded by God in their faith. This great cloud of witnesses spurs us on to endure and trust that Christ is our source of grace. Our hearts will not be strengthened by the pantry, the bottle, the pill or the internet. Our hearts and minds are strengthened by Christ's grace and truth that is unchanging.

On a hard day, we need to fallback on Christ, not our old habits and vices.

Can I Ask You A Question?

2010-08-18T23:19:00.005-04:00

On the way home from church tonight, Jacob spoke up, "Dad, can I ask you a question?" When your seven-year-old asks this, it puts you on your toes. Will it be, "How are babies made?" or "Why do some people not stay married?" or "Why did God let me get hurt today?" or "Do you remember that movie where Buggs Bunny and Daffy were in the desert and saw the mirage?" The possibilities are practically endless.

Of course, I have been dealing with a lot of questions lately. We started a Tough Questions small group at church and I have had to analyze a lot of questions over the last few weeks. When people have the freedom to ask anonymously, you tend to get honest questions. Maybe people are worried their question will be taken as irreverent or stupid. But those questions need to be asked and addressed. I believe people want answers to their questions, but I am finding many people just won't commit to finding the answer. Many of the questions I have seen lately have life altering ramifications, yet not many are interested in looking into it, other than asking the question.

When Jacob asks tough questions, I am relieved in some ways that he will not settle for a short version of the answer. He wants to understand it inside and out. That's good...sometimes. Other times it gets annoying when he asks for explanations on every little thing. But I wish others shared his drive to get to the bottom of things. So, anyway. Jacob's tough question was, "Dad, do you remember that movie with Buggs Bunny and Daffy when they..." And he settled for my response of "Yes."

The Stupor

2010-08-12T21:20:00.003-04:00

I start Greek class online in two weeks. Jacob starts school in a few days. Jennifer has been shifted to an interim position at work and her schedule is in flux. There feels like so much to do around the house and it feels like it must be done in a hurry, but the reality is it just feels this way. The things we need to do are not needed by tomorrow. I am also looking for work and that is not the easiest thing to find right now. My brain does not seem to be functioning properly and what is normally a simple task suddenly becomes the mental equivalent of an advanced Sudoku game. I actually poured Diet Pepsi into my soup the other night instead of into my glass! I'm just glad I haven't mixed up the anti-fungal cream with the toothpaste!!

I have been painting Macayla's room. I get headaches every time I work in there, but I suspect it is not from paint fumes. Grief creates this stupor. It can stay surreptitiously in the background giving us only random symptoms and frustrations. It can cause multiple psychosomatic pains and never stir sadness once. Other times it seems to stir every emotion but sadness. The end result can feel like there is a hot, suffocating blanket between you and the rest of the world. Grief is difficult on more levels than you ever expect. It pushes you to seek comfort or escape and often in outlets that are not healthy or righteous. We may seek comfort in food, alcohol, drugs, sexual gratification, or a whole host of different options. I even caught myself looking at the International Mission Board website wondering if I could go on a mission trip to India in January 2011. It took me a few minutes to realize I was more interested in an escape than serving God.

Even good things can be turned into an idol. When we replace our Comforter with food, alcohol or anything else, that is idolatry. We are seeking what only God can give through other means. But it means we must surrender to Him, listen to Him through Scripture and seek Him first in our grief. The amazing thing is that He even prays for us when we cannot (Romans 8). There is nothing easy about it. The peace God gives is beyond understanding, but it does not always stop the hurt. It just carries us through the pain.

Nothing Easy About Nothing Special

2010-08-03T22:24:00.004-04:00

It is amazing how some of the smallest things can be the toughest. I saw a photo today of Macayla and it was not from any special occasion. It was not from a vacation, birthday or family get-together. It was just a photo of Macayla in her chair on a normal day. It was even from several years ago. It was nothing special, but it was hard on the heart.

This photo that was nothing special suddenly became special and difficult to bear. We have been very busy lately and our emotions cannot always keep up. But they caught me today. How I miss her so. I miss being able to draw that smile out of her, but also how beautiful she was even when she didn't smile at all. I am so glad I got snapshots of both. My photography never could capture the full essence of her expressions, but they at least captured enough to keep the memories close. I know she is healed now, but I still want her back. It is selfish. But Christ has her and He has us too.

So, be sure to take plenty of photos, both with a camera and your memory. Take some snapshots. Some of the best pictures are never posed or planned. The same goes for memories. Just let the shutter fly. It's hard to remember sometimes. After a loss, there is nothing easy about those "nothing special" memories. But I never want to forget!

New Look

2010-07-30T22:00:00.001-04:00

Check out the website's new look. There is a bit more tweaking to do, but it's up and running.

Here's Your Sign

2010-07-29T07:27:00.004-04:00

So, we are on our way to New Orleans to visit the seminary campus and during a stop-over in Montgomery, AL the weather report above comes out. Tropical storm Bonnie was on its way to New Orleans and would hit two days after we were to arrive. Five years ago, when we moved to New Orleans for seminary, a little tropical system known as Katrina showed up two weeks after we moved in. Of course, we had to evacuate and it was a few months later we got Macayla's diagnosis and God let us stay in South Carolina while she was still with us. We are so thankful for that time.

I was sitting in the hotel lobby in Montgomery, drinking coffee and looking at this weather map. Was it a sign we are not supposed to go back to New Orleans? After Katrina, several folks said the hurricane was a sign we should not be there. Many said this tongue-in-cheek, but several were serious. Others did not even consider it a sign but simply said it made no sense for us to move to such a place and it still doesn't. When I saw the forecast for Bonnie, I heard those statements again. We were headed down just for a visit and the tropics showed out! Well, we continued on to New Orleans and come Sunday morning, Bonnie had simply fizzled out. We were thankful it did not do more.

Is God trying to tell us something in all of this? Why, yes He is! He is trying to teach us that circumstances are not the primary communication tool He uses. If we rely on circumstances to tell us what we are supposed to do with our lives, we will never be settled on our purpose and God's will. God gave us something called Scripture for that. In the case of Bonnie, we could say, "That was God's way of reminding us to stay away from New Orleans." But, since the storm fizzled out we could say, "Look it's a sign God will protect us from the storms now and is confirming we need to move to New Orleans." Depending on our emotional state or how spicy our Mexican food was from the night before, we could come out with all sorts of interpretations of our circumstances.

That is what Scripture is for. It is the filter and lens we are to see our circumstances through. God reveals himself to us in Scripture and the clearer we see Him, the clearer we can see ourselves and our circumstances. But we have to be looking for what Scripture says about Him first. If we pick up the Bible and treat it as a self-help book, textbook, or magic formula to fix our lives, we will be very disappointed. We must seek what the text reveals about God first and from there answers begin to flow. Scripture records for us that Jesus even said, "Seek first the kingdom of God and all these things will be added unto you." (Matthew 6)

So, were Katrina and Bonnie signs? Yes, signs of bad weather! Besides, how prideful and silly it is to think God would orchestrate hurricane Katrina, kill over one thousand people and displace hundreds of thousands more just to communicate to the Smoaks from South Carolina to not come to New Orleans! Certainly God is capable of such power, but He already gave us His direction for our lives through Scripture and much prayer. For some people it does not make sense to move to a city that is located in hurricane ally and is below sea level. It doesn't make sense to us either, except for the fact God said to.

One of the things Scripture reveals about God is that He rarely calls people to a comfortable and posh purpose. It happens sometimes as we see with Isaiah and Nathan in the Bible. But when God became flesh in Jesus Christ, He came to a hard life that was rejected and misunderstood by many. The signs he performed were misinterpreted by many. After three years of ministry and miracles, He had 120 disciples. Definitely not a mega-church! He went to a literal Hell on earth at the cross where the just wrath our sins deserve was placed on Him and not us. This was certainly not "Your Best Life Now" kind of Christianity! There was no smiling at the cross! Christ died at the cross, but rose from the tomb. He called us to take up our crosses and follow Him. If that means we have to go to places that are not comfortable or even dangerous, then that is where we go. This does not mean we throw our brain in the trash can. That is not faith. It means we are to utilize our brains and see what God tells us in His Word and act on it. We have to use our brains, hearts, bodies and souls to serve Him. ("Love the Lord, your God, with all your heart, mind, soul and strength..." the Greatest Commandment.)

So, here's your sign (to quote the comedians). It's called Scripture and prayer. It is God's gift to us so that we do not have to flounder and squirm around wondering what our purpose is. Let us seek Him first, take up our crosses and go!

By the way, God confirmed for us through prayer and Scripture that we are to move back to New Orleans Baptist Theological Seminary. We are working toward starting on campus by next fall.

Child-Like, Not Childish

2010-07-17T06:22:00.003-04:00

We just spent a week on Hilton Head Island with a lot of family. It is an annual trip and we have tried to go when we could in the past. This year was full of fun as always, but it was hard for us. Being on vacation without Macayla seemed wrong. Moving on and doing things we as a family need or want to do can even stir up guilt. Of course, we know there is nothing to be guilty about as we have to get on with our lives, but the guilt is there nonetheless. Even the thought of starting back with seminary has a strange mix of excitement and guilt. But we know we have to pursue what God has for us and "move on" so to speak. Besides, even Macayla's last word was "Go!"

The beach was fun and we took our dog Lily with us. She loved the water and wanted to chase every bird she saw, even if they were a quarter mile out in the ocean. She also seems to be on the menu for alligators! A seven-foot alligator was very interested in Lily when we walked along the lagoon behind our condo. Jacob wore himself out and stayed wet, sandy, sweaty, and on the go most of the time. We fished and crabbed with minimal results and ate way too much. It was good to see so many in our family at the same time.

Jacob has been worried over the possibility of moving back to New Orleans. He became upset at one point this week when it came up. He says he wants to stay through the fifth grade at his current school and he is worried he will not have any friends in New Orleans. He simply was too young to truly remember when we were there the first time, but he literally started making friends in the first 15 minutes he was there. We tried to reassure him and I looked for some Scripture on the matter. What struck me was Matthew 18-19. At first this section of text caught my attention because it records Jesus holding children up as examples of what it means to be a disciple. But the text has a message for us all and it was ironic I was studying this while staying in Sea Pines on Hilton Head Island.

Jesus said we must become like a child if we want to enter the kingdom of heaven. We must not import our modern, western ideal of childhood into this passage. Jesus is NOT saying for us to be naive, cute, and uninformed. In first-century Judea, children were third-class citizens. They had little to no rights. Jesus was telling his disciples, grown men, to give up their rights; to humble themselves and put others first. It was radical and insulting in that culture. The idea of debasing ourselves is insulting for our own culture. Later, Jesus teaches his disciples to not prevent children from coming to him for the "kingdom of heaven belongs to such as these." The next person they meet is a rich, young man recorded for us in Matthew 19:16-30. The young man asks what it takes to have eternal life. Jesus responds with a summary of the Ten Commandments, conspicuously leaving out the first four. The man responds he has done all of these things but seems to know something is still lacking and asks as much. Jesus said if the man wanted to be complete he needed to sell all of his things, give the money to the poor and follow Christ. The rich, young man went a way grieving.

Jesus told his disciples it was more difficult for a rich man to get into the kingdom of heaven than for a camel to go through the eye of a needle. This amazed the disciples as their contemporary theology told them wealthy people were blessed by God for their righteousness. If they could not get into heaven, who could? They would have looked around Sea Pines and seen a bunch of righteous people. But Jesus was saying our wealth and possessions can become idols and hinder us from serving him. This is what the first four of the Ten Commandments is about. Peter proclaimed he and the disciples left everything to follow Jesus. What's in it for them? Jesus responded that the disciples will have places of authority in the eternal kingdom and anyone who "has left houses or brothers or sisters or father or mother or children or farms for My name's sake, will receive many times as much and will inherit eternal life. But many who are first will be last; and the last, first." There it is!

This is what Jacob and our family needs. When we consider God's call on our lives as a family, what is keeping us from following it? A house? A comfortable, safe neighborhood and school? A certain income level? None of these things are bad and sometimes we are blessed with them so they can be used for God's kingdom, but not our own. As I looked around Hilton Head Island, I saw great blessing, but I wondered how that blessing was being used for God's glory. It made me wonder if an alternative family vacation could be a mission trip. If I could get my extended family involved we would have a ready-made team of nurses, construction workers, engineers, great cooks, great childcare, and a Bible teacher. We even have an attorney! Our family has all the skill-sets we need to meet a wide range of needs.

In the meantime, we are planning a trip to New Orleans to get reacquainted and seek God's confirmation, one way or the other, if he wants us to return. We hope this Scripture and the trip will also help Jacob gain some clarity as well. Pray for him and us, please, as we seek to be child-like, not childish, for Christ.

A New Friend

2010-07-06T18:51:00.002-04:00

Today, we got to meet a family with a special little girl. Stephanie has a mitochondrial condition among other diagnoses. She lit up when we told her how beautiful she was. She cooed at us as we held her hand and smiled so big! She acted just as Macayla did a little over a year ago. It reminded me of when I could make certain sounds and it would get Macayla to laugh a certain way and smile. She would be very responsive. Stephanie transported us back in time a bit. We got to connect with her, and in a way, with Macayla. It was joyful, helpful, tearful and hard all at the same time. I had to restrain myself from just scooping her up in my arms. (Since they just met us, I wasn't sure her mom would understand.) It was good to meet her and play with her. I could have stayed all day. What a big blessing from someone with such a small frame. Thank you, Stephanie and thank you, Lord for her and our time with her.

Macayla's Celebration Video

2010-07-02T19:59:00.005-04:00

Here you will see a quick glimpse of Macayla's funeral. Unfortunately, there was no footage of all that we set up in the gathering of family and friends just before the service. But hopefully, it will give you an idea. Gene Ownbey at Edwards Road Baptist Church preached this sermon. I wish I could have shared the whole thing, but Youtube won't allow a video of that length. Thanks to all who have held us up through this.

Funerals

2010-07-01T12:19:00.002-04:00

We thank everyone for the continued prayers and support. We still get cards and emails and they certainly show up at just the right time. Thanks.

We are doing well and appropriate overall. We have found a home for almost all of Macayla's equipment so that other special-needs families can benefit. We are still sorting many items and that always seems to stir up memories, some hard and some sweet. Jacob has been very busy and having fun this summer. He seems to be showing the first signs of outward grief. We were told that kids can take as long as six weeks before they even cry. He is a strong kid and like his Dad, he struggles to process and express emotion.

We really want to thank McDougald Funeral Home. They were great to work with and went the extra mile with us. Mark and Wendell were great to work with and were very thoughtful, sensitive and encouraging. They thought of things we never would have. They listened to our wishes and helped us weed through the details.

It is the details and cost of a funeral that can be so overwhelming. We felt like we needed to share a bit about that for other families who are on a similar path to our own. But it is good for all of us to know as we all will make a trip to a funeral home one day.

The cost of a funeral is more than you would expect. We are only sharing this so that others can be more prepared for the financial side than we were. We put money back and pre-paid for part of the funeral, but it was still not enough. Thanks to the generosity of some family and friends, the costs were covered.

The funeral home services were worth every penny to us. That was approximately $4,500 and that covered their services, limos, transporting Macayla, etc. This could have been a little bit more had we held the visitation or the funeral in their facilities. Then there was the obituary in the newspapers. This is the part we struggled to understand. Greenville news charged us $445; Anderson Independent - $94; Aiken Standard - $244; and Williamston - $18. They charge by the line typically and that is understandable, otherwise people would go on and on in the obituaries and take up too much space in the paper. (In fact, some do!) But I just had to wonder why they could not put a reasonable, standard price for a basic announcement and then charge by the line beyond that. Anyway, there is also the costs of death certificates which is not much ($54 for 12 copies). The caskets usually start just under $1,000 and go up from there. Macayla's was very simple and cost $960. If you have a pastor and musicians involved, you will want to include an honorarium for them as well. Such as $100 for the pastor and $20-$50 per musician depending on the situation. The funeral costs were around $6,400.

But there is also the cost of the cemetery. Macayla was in a mosemleum and it is more expensive than a plot in the ground. But the plot requires a vault and the burial, and those are on top of the cost of the plot. I'm not exactly sure of the mosemleum costs as her spot was given to us by family. But I believe it is around $3,000 for the spot and to open and close it at burial. Then there is the marker that goes on it. We spent $1,200 on that. Memorials on grave plots have a wide range of prices depending on how ornate and large. Overall, the cost of Macayla's funeral was about $11,000. This is a lower-end price as we did many things ourselves for the visitation and we did not spend much on the casket. Knowing this can help someone plan for a funeral's cost more effectively and more realistically.

We pre-planned Macayla's funeral, but there were still plenty of details we had to work out in those few days after she passed. Pre-planning does not cover every base, so be prepared. But pre-planning made it all that much smoother once the time came. It is worth it and with McDougald, we were able to pay ahead of time what we could and it went into an interest-bearing account. The money we put in there made more money and that went further in paying for the funeral. Pre-planning and pre-paying is the way to go.

Speaking of all the decisions that must be made between the death and the funeral, it can also help to have someone who will go with you to the funeral home and cemetery and help with the financial decisions. It helps to take someone along you trust and is able to stay more objective because their level of grief is not as heavy as your own. Unfortunately, there are people in the funeral business that will over charge or add services you never wanted. Having a clearer head in the room with you helps. We were fortunate and did not have that problem.

This was our experience. I hope it helps someone else. We thank you all for your continued love. We miss our little girl. We love our little girl. We know she is right where she needs to be and she is loving it. We celebrate with our little girl.

This Far, but no Farther

2010-06-30T05:54:00.004-04:00

I am a seminary student and hope to get back to course work soon and even earn a Ph.D. in the near future. But for me, studying Scripture is not an academic pursuit. Scripture is supposed to reveal God to us. Its primary function is to reveal God’s character and from that we can learn what His will is for us. We can see our sin, our need for growth and change when we see God clearer. So, for me, I want to know what kind of God would allow, cause or permit my daughter to suffer the way she did. I want to know if He is cruel and capricious. Is He all-powerful? Is He really in control and if He is, why do we suffer? These philosophical and theological questions are not academic for me. These questions and their answers will shape the rest of my life. The answers to these questions will shape how I go on from here in the face of my daughter’s suffering.

There is an ancient story in the Old Testament about a man named Job. Many people have heard of Job and that he is somehow regarded as “patient.” Very few people actually take the time to read his story. Quite frankly, it is a tedious story to read. It starts with a very troubling narrative that raises all kinds of questions for us as modern readers. Unbeknownst to Job, God and Satan seem to be wagering over Job’s faithfulness and as a result, his suffering begins. From there the story seems to bog down for twenty-nine chapters as Job and his friends argue over his integrity and the source of his suffering. When you finally reach the end of the story, a new character shows up but offers little. God shows up and just when you think He is going to give us some answers, all He does is ask question after question. Job does end up with all of his losses replaced and then some, but as modern readers, we are left with our questions and little satisfaction.

The problem is not that Job’s story fails to answer any questions. The problem is that we are removed from the culture and time this story was written in. We have a hard time appreciating the nuances and implications of its expressions. But above that, our real struggle is we are not always ready for the answers it provides. We may avoid Job’s story out of more than just its tedious design. We often avoid it because it may fuel or confirm our worst fears about God. As C.S. Lewis stated in A Grief Observed, “Meanwhile, where is God?... Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not, ‘So there’s no God after all,’ but, ‘So this is what God’s really like. Deceive yourself no longer.’” But I have come to the conclusion that if God is all we think He is, then He can handle my questions. I will not be able to stump Him or catch Him in a true contradiction. If God is who He says He is, then I will often find I am just not ready for the answers to my questions. The contradictions will be found in my thinking, not in God.

One of the first lessons we learn from Job is that he was faithful in the midst of success. He was a wealthy man and he had many children. For many of us and our culture, prosperity and pleasure have driven us away from God, not toward Him. It’s easy to angrily ask God why in the midst of pain and suffering, but do we ever ask Him why when we are blessed? Why have You blessed me with a family, Lord? Why have you blessed me with a home and its amenities? I believe we fail to ask this question, because deep down we assume God is supposed to bless us. We assume we deserve it. We also may worry that if we ask why He has blessed us with opportunities and material wealth, He may answer that we are to use such blessings for His kingdom more than our own. We are not always keen on that. But Job’s faithfulness in blessings gave him a foundation to draw from in suffering.

The troubling part of Job’s story is the beginning. For some reason, Satan (the adversary) comes before the throne of God. God asks him from where he has come. Why would an all-knowing God need to ask from where Satan had come? It is like the time God asked Adam and Eve where they were after they sinned in Genesis 3. God knew, but in answering the question, Satan had to remind himself of the distance between him and God. Satan’s answer was that he came from roaming around on the earth. This exposes that Satan has no place in God’s court. When God asks us questions, our answers are meant to inform us of the truth He already knows. Then God brings up Job, “Have you considered my servant Job? There is no one like him on earth, a blameless and upright man, fearing God and turning away from evil.” As an audience, we want to ask, “God, why did You bring up Job? You know Satan is going to take the bait and go after him. Shush!”

It is here that Satan attacks as we might expect. He claims Job would stop being faithful if the blessings stop. So God gives all of Job’s blessings over to Satan’s power, but He does not allow Satan to strike Job directly. Satan struck Job’s vast wealth through raiding parties of foreigners who killed Job’s servants and stole his livestock. Lightening destroyed more servants and livestock. Then a strong wind, maybe a tornado, knocked down a house all of Job’s children were in and killed them. Job receives word of these disasters one after another. There is no time to breathe between the messages. Job tears his robe and puts ashes on his head to mourn. God turned Satan loose and people died! God, why did You bring up Job? But we turn our attention to Job and wonder if he will curse God now. Now that the blessings are gone, will Job do as Satan predicted? Job’s response was to worship and say, “Naked I came from my mother’s womb and naked I shall return there. The Lord gave and the Lord has taken away. Blessed be the name of the Lord.”

Let us pause and learn what Job’s statement meant. This statement has become cliché for many in the church. We use it as if to say, “Such is life, let us move on.” We miss the power of Job’s statement. The original audience would have gasped at this point of the story. That is why the writer had to clarify for us in 1:22 that Job did not sin nor blame God. Job’s statement would have sounded dangerously close to a curse of God. The Hebrew word for “blessed” in Job is the exact same Hebrew word used for “cursed.” It is an intentional play on words to keep us in suspense. Job also said the Lord gave and the Lord has taken away. He did not say Satan took away. Thus the writer had to clarify for us that Job did not blame God. But we want to. We know what Job did not know. We know God handed Job over to Satan. This is where we become deeply troubled.

But it gets worse. Satan goes back before God and God brings Job up again! Satan claims Job is still too blessed! So, God gives permission to strike Job physically but Satan is not permitted to kill Job. Now Job is worse off than before. His body is covered in boils. He is reduced to a shell of a man. Because of his skin condition, he was forced out of the community to sit in community dump where trash is burned. He was so bad off that his friends would not recognize him. His wife who has suffered these losses and is also in the throes of grief told him to curse God and die. We cannot blame her. Job rebukes her statement and says, “You speak as one of the foolish women speaks. Shall we indeed accept good from God and not accept adversity?” Again, the writer had to clarify that Job did not sin because this statement could sound like he is blaming God. But we want to blame God. He started all of this. We want to blame Him and we want to demand an answer from Him as to why this happened.

Satan loses his wager in the opening chapters and we never see him in the story again. But Job’s friends come to comfort him and end up playing the same role as Satan. They came to comfort Job but end up accusing him. This is where the story seems to bog down and go on endlessly as these friends and Job debate the cause of his suffering. Three big lessons can be learned from these tedious chapters. First, Job’s friends provided comfort in the beginning when they showed up and said nothing. It was when they spoke they brought more pain. Our presence offers greater comfort to those in grief more than any words can. Second, these chapters drag on and on and on because everyone in the debate is really unqualified to explain the situation. Only God can adequately do that. When we try to offer someone comfort by making theological statements about God or offer reasons for the suffering, we are really overstepping our bounds. We cannot know the ultimate reasons for someone’s suffering. We may see some results that flow out of it, but those are just circumstantial results, not necessarily the reason. God may use those results, but the over arching reasons for our specific suffering is known by Him, not us.

Third, throughout these chapters, Job’s friends claim it is some hidden sin that has brought on this suffering. Throughout the debate, we wonder if Job’s friends bring him to the point Satan wanted and curse God? Job inches closer and closer to it with many different statements. Slowly, Job seems to come to the same place we as an audience are at already. We want to blame God and demand that God give an explanation. Job begins to ask the same. He wants God to give a reason for all of this suffering.

The lesson here is that God is not aloof to our situation, even in his silence. Job declares he wants to take his case before God. Job logically deducts there is a need for a mediator between humans and God. We are in a fallen world where sin’s effects have impacted every aspect of our existence. God is perfect and holy. The distance between Him and us is infinite. Job points to the need for a mediator. This is the Gospel according to Job. Job’s story points us to Christ. Christ is the mediator who closes that infinite distance between God and us. God became flesh and dwelt among us in Christ Jesus. He lived a perfect life free of sin even though He was tempted in every way. He died on the cross to take the just wrath we deserve for our sin and rose again from the dead to defeat death and sin. It is by the work of Christ alone we can be restored in our relationship with God. Job’s story points us to the need of a mediator and Christ fulfills that need. In our suffering, since we are on this side of the cross, we know exactly who our mediator is. We can present our suffering, our sins, our struggles and our pain to God through Christ.

For those on Job’s side of the cross, Job’s demand to take his case before God sounded blasphemous. Who did Job think he was? After Job’s three friends try unsuccessfully to convince Job of his folly, a fourth friend, Elihu, shows up and tries the same. Elihu is a mysterious character but acts as a transition between the human debate and God’s counsel. Elihu’s function is highly debated, but suffice it to say he sets us up for the entrance of God into the story. Elihu becomes somewhat of a foil for what God is about to do. God shows up in a storm. God speaks to Job and asks:

Who is this that darkens counsel by words without knowledge? Now gird up your loins like a man, and I will ask you, and you instruct Me! Where were you when I laid the foundation of the earth? Tell Me, if you have understanding.

The audience and Job’s friends are bracing for what they think is Job’s demise. God’s speech lays out God’s sovereignty and transcendence Job’s friends have been arguing for the whole time. We expect that God is about to lay it to Job. As God takes Job on a tour of creation and God’s sovereignty over it, we can almost hear his friends saying, “Amen! Bring it Lord and let him have it! Show him we were right!”

But God’s speech is not simply a “might-makes-right” diatribe. He’s not simply saying, “Because I made all of this, you have no say in the matter.” In fact, God really deals with more than just the created items, but declares his ultimate control and knowledge of death, morality, human ingenuity and ability. When God speaks of the donkey, ox and horse, he speaks of them in terms of how humans have used them. We need not be too quick to credit ourselves with the ability to tame such animals and use them. God made it possible for such animals to be used as vehicles of work, war and pleasure. Think of our own technology. Where does the sand and silica come from we use to make microchips? Where do the metals come from we use to make circuits and wires? Where does the oil come from we use to make the plastic housings for our technology? God put it there and gave us the curiosity and ingenuity to use it. When we gain this perspective, we learn we are not the masters of our universe. All of our achievements are rooted in the common grace of God. The fact we can even ask such questions is an act of God’s grace.

But the common thread throughout God’s speech is that he may allow evil things to occur, but he puts limits on it. In 38:11 God declares he told the sea, “Thus far you shall come, but no farther; and here shall your proud waves stop.” Just as God put limits on Satan’s activity in the beginning of the story, God put limits on the forces of evil. He may allow suffering into our lives, but he prevents it from going any farther than it should. Our problem is that the point at which we would stop evil or suffering often does not match up with where God stops it. This angers us, but God demonstrates to Job, his friends and to us that we do not have a big enough perspective.

God could have never given humanity any moral choice and prevented evil, but then that would have prevented us from ever being able to choose or experience love as well. God could have left us in our sin or destroyed us, but instead he became flesh and died on the cross for that sin. God could have allowed not only Macayla to have Battens, but our son as well. Instead, he blessed us with nine years of a beautiful girl and a son who will not suffer from the disease. For our family, God told Battens disease, “Thus far you shall come, but no farther.” Do we wish he stopped it before it reached Macayla? Of course we do, but I know we do not have the whole picture yet. We cannot see the reasons and all of the results yet. But I guarantee that when we get to heaven, we will NOT look at God and say, “That was a terrible plan! What were you thinking?” No, we will be amazed how God weaved our lives, suffering and choices into his plan.

In the end, Job found comfort in two main things. First, Job found comfort in the presence of God. We often experience such comfort and presence when we are surrounded by His people. Second, Job had the promise of restoration and vindication. Our daughter is restored! She is whole now with Christ. Her life will be vindicated when we see the greater plan and how God used it. With that promise, we find comfort. We find we can actually trust God. We discover we can present our suffering and pain before Him because we have the mediator Job longed for. We have Christ!

Radical

2010-06-27T08:16:00.002-04:00

I heard this book was out, but did not get to check it out until this week. If there is one book you read this summer, this is it. David Platt was at New Orleans Baptist Theological Seminary when we went down there in 2005. We were able to hear him preach 3 or 4 times and I can still remember sitting in those sermons. I even have them referenced in my journal. David is gifted by God to share the Gospel. He is a prophet for the Church. Now understand that the true meaning of the word prophet and the gift of prophecy is not fortune telling. It is sharing God's truth by and through the power of God's Spirit. Sometimes prophecy has implications and predictions for the future, but its main purpose is to change things in the present.

David's work here is top notch and will challenge us as individuals and as a Church to experience a reality-check on where we are and to give us direction for the future. As David says, "The gospel does not prompt you to mere reflection; the gospel requires a response. In the process of hearing Jesus, you are compelled to take an honest look at your life, your family and your church and not just ask, "What is he saying?" but also, "What shall I do?"

Van For Sale!!

2010-06-25T16:14:00.003-04:00

We are selling our handicap van. You can check out all the details on the Uncommon Needs blog. It can be seen and test driven at Haynes Auto Sales on Clemson Blvd. in Anderson. Spread the word to any families that may benefit from such a vehicle.

My Way, Your Way, HIS Way

2010-06-19T06:24:00.003-04:00

The divorce rate among special-needs families is higher than other families. Unfortunately, there are differing stats out there about how much higher. Some put it as high as 80% while others put it in the 55% range (compared to about 50% of "normal" families). As Americans we love numbers and always want to know the numbers. As one economics professor told me in college, statistics expose a lot, but not what you really want to know.

Marriage is hard work and the return on that work is great! It is just hard to stay motivated. It's hard to keep at it. Jennifer and I struggled with the daily care and decisions for Macayla. That is sure. But we also struggle with decisions over money, discipline of children, priorities around the house, etc. Now that Macayla has gone home, we struggle with a new stage of grief. It's easy to find myself wanting Jennifer to grieve the way I do. But this is where Jennifer and I are very different. What she finds comfort in can cause me pain. What comforts me is of no help to her. We have struggled over decisions since the funeral because of our different approach to grief. We can find ourselves arguing over what to do with Macayla's things or room. The real problem is that we approach these decisions from a different starting point in our grief.

The fact is, marriage with a special-needs situation is harder than it would be without it. Caring for a person on a daily basis in your home takes time and often the first place we take time away from is our marriage. Those daily decisions can highlight a couples differences. Marriage is also difficult in the face of losing a child. Of course, there are plenty of circumstances that can come along and strain the energy and time we have to put into our marriage. So, it really comes down to the condition of the marriage aside from these situations. How is the marriage in and of itself? That can be a difficult question to answer. It is hard to view our marriage apart from our circumstances. But if our marriage is defined by our circumstances, then we are headed for trouble.

I forget who I first heard it from, but I've heard it many times since. Basically, the marriage must be based on its own relationship. It cannot be based on the kids, social status, circumstances or money. That's what lies behind the vows, "for richer, for poorer; in sickness and in health..." Our most cliche vows capture the idea that regardless of circumstances, the relationship is first. It's easy to want Jennifer to do things my way and even grieve my way. It's easy for her to want me to grieve her way. But we are praying right now we will do things God's way. It's hard, very hard at times. We are thankful for all of the prayers people have offered up over the years for the solidarity of our marriage and the ones they offer now. I keep telling Jennifer those prayers would be answered if she would just do everything my way! I think she feels the prayers ARE being answered by her NOT doing everything my way. What's up with that?

All kidding aside, special-needs families certainly face a daily struggle that is demanding on a marriage, more than most circumstances. But what we are stubbornly learning, is that our marriage has to have a definition found in itself and not in our circumstances. Americans always look at the numbers, divorce rates and statistics, but there are plenty of marriages that have been dead for a long time even though they may never get a divorce. We cannot gauge our marriages by stats and circumstances. We pray with counseling, love and God's grace, we will continue to build our marriage on more than numbers and situations.

Why Didn't He Save the Day?

2010-06-15T18:17:00.003-04:00

Throughout our experience with Macayla and even in the loss and suffering of others, I have often asked, "Why?" I have asked this question in anger and in hope. I have asked God why such things happen. Where was He? Why didn't He save the day? It's a question we all ask at some point.

Before we can come even close to an answer to such a question, we need to question our intention. What is our intent in asking the question? Do we really want the answer? Maybe we are looking for our circumstances to be changed more to our liking and could care less about the greater reasons for our calamity. Are we asking the question in anger or is it cynically rhetorical? Are we asking in surrendered faith? Are we asking only while the emotions of grief are fresh but ignore the questions and their answers when our intellect is not drowning in emotions? If we are asking it in order to fuel our present angst or cynical viewpoint; if we are looking for another reason to write off God, then we might as well not bother asking the question.

The question of why is a wholesome and good question if we are willing to let it lead us to actual truth. I have heard some preachers and Christians advise that we should not ask why but "what?" As in, "What does God want me to learn from this?" Obviously, that is a good question for any situation, but asking why is an important step in grief. Multiple, faithful people in Scripture asked God why. Our hearts want to know why, and our intellect wants to know why. To not ask why would starve both of an important step in our growth and healing. The question remains if we are truly ready for any answers. Often the answer to such a daunting and cosmic question will not fit into our preconceived notions about God and life. Skeptics and nonbelievers often accuse someone of my faith as being close-minded. The fact is, to be a Christian means you have to be the most open-minded, open-hearted, opened-souled person of all. We have to or else we would put God in a box. When we are truly open to discovering who He is, then our open minds, hearts, and souls get filled. They are filled with His truth and Spirit. Let us ask "why" but let us also surrender to the Answer.

It's not comfortable. It's not comfortable to put ourselves under the magnifying glass to look for what may be holding us back. What keeps us from seeing the Truth before us? What keeps us from being changed by it? Why does our daily life not reflect what we truly believe? Is our idea of God or what it means to be a Christian even close to accurate? Honestly asking ourselves these questions is not comfortable.

But on the other side of this discomfort, there is a freedom and a newness. The God of the Bible certainly loves us, and so much so that He won't leave us the way we are. He will not waste our suffering. He will not allow it to be for nothing. He will not waste our blessings and fortunes either. Unfortunately, we can be so blinded by our presuppositions, by our anger or cynicism, that we miss it. We miss the opportunity to see God's grace, truth, love and even mercy in the midst of suffering. He doesn't waste it, but we sure can. Being a Christian does not give us a pass on suffering. Being nice does not protect us from pain. This is a world where everyone will face it. The real question is: how are we going to face it? Will we face it in Truth and Spirit? Will we face it and truly keep ourselves open to God? Or will we just see it as one more reason to not trust God and just stay the way we are?

"Why didn't He save the day?" He did! He saved the day on the cross and at the tomb. Sure He could intervene in every circumstance and make it more pleasurable. He, in fact, does at times. But if He intervened every time, when would it end and according to whose definition of "pleasurable" will it be, ours or His? Instead of simply treating the symptoms of this fallen world and its suffering, He cured the disease. When He became flesh, died on a cross and rose again, He defeated the ultimate consequences of sin and death. He gave us a chance at new life, not just in the eternal age to come, but here and now. Will we see it or will we waste it? Let us check our intentions and then ask the questions. Let it lead us to the truth...

Unexpected

2010-06-05T08:05:00.002-04:00

We decided to go camping for a couple of days this week. It has been years since Jennifer or I have been and it was Jacob's first time. We quickly discovered many things we needed and didn't bring but the good news was we were only ten minutes from the house. It was great because we were on Lake Hartwell and it seemed like we were far from home, but we were close enough to get what we needed.

Jacob absolutely loved it and did not want to come home. Lily went with us and went swimming for the first time. She was mesmerized by the lake, it's noises and motion. Once she got in, she didn't want to quit. Being a Corp of Engineers camp ground, she had to stay restrained on a leash or line the whole time and she didn't like that. The squirrels and birds taunted Lily from a safe distance. She so wanted to chase them! Jacob loved using the tent he got for his birthday and he's ready to go back. Dad, on the other hand, needs a rest as camping is labor-intensive relaxation!

But on this side of the funeral we have faced many ups and downs. On Thursday morning, I was glad we were camping, away from the house, phone and email. On Thursday afternoon, I wanted nothing more than to be home. We have found our energy level will suddenly drop off and we will crash.

We have been grieving for 4 1/2 years. Our devastating news came with the diagnosis. We have grieved along the way as Macayla lost more and more abilities. That's why our tears were different at the funeral than many expected. But it has been different than we expected. We've always know we could never be fully prepared, but we did not expect the ups and downs to be this frequent and wide in range. There are little things that impact you more than you expect. I pulled a little glass jar out of the dishwasher. It was the jar we always mixed one of Macayla's meds in. This little jar brought on an unexpected flood of emotion. Then there's the back and forth about Macayla's things. One moment I want to clear everything out, and the next I don't want to touch anything. We also are constantly reminded that our schedule does not revolve around Macayla now. That is very difficult. It comes a mix of relief and guilt. We miss our girl.

Again, thanks to all for the continued prayers and support. We also thank so many of you who have made donations in honor of Macayla to the various organizations we mentioned in her obituary. We have been receiving notices daily. We pray that through all of this that people see what a blessing Macayla is, learn about special-needs, find resources that help with special needs, and that the works of God would be displayed in Macayla's life. That's why we share. He has been faithful and given grace and peace beyond understanding through this and He will continue to do so.

Just What Was Needed

2010-05-30T09:03:00.003-04:00

For those who couldn't make it or stay for the funeral service, I wanted to share this. Gene brought it up during the sermon. Macayla was born May 22, 2001 and died May 22, 2010. A few days later, we were riding in the van and when I looked up at the rearview mirror, I saw this:

The placard expired May 22, 2010. We would not need this placard another day! When we got this permit four years ago and saw the date, I wondered if we would ever have to renew it.

I Knew, But Now I KNOW

2010-05-28T06:19:00.005-04:00

I've been to multiple funerals. Some have been close family, others just friends. I have always known the "wake," "visitation" or "receiving friends and family" portion of the funeral was an opportunity for the family to experience the comfort of others' presence. I always knew it was meant as an opportunity for others to view the body and have their own moment of closure.

I knew this, but now I KNOW in a new way. When we woke up yesterday morning, I told Jennifer I did not want to do this. I did not want to go to the funeral. I did not want to see Macayla's body again. I did not want to be around anyone. But she reminded me I had to. Macayla's life had a purpose and so did her funeral. We could not let her down. I felt drained of energy even before the day started, but after seeing all of the people come in and having the opportunity to interact with as many as we could, I was refreshed. There was no one phrase, cliche, or phrase that did it. It was simply the presence of all the people who love us and Macayla. It was the overwhelming work of God's grace through a crowd of love.

One of the last couples I spoke with had also lost a child some years ago. I shared this with them. I shared that I finally understood how this portion of a funeral worked. I came in depleted and left for the worship serviced recharged. They relayed a very similar experience with their daughter's death years ago. On top of that, we continue to sort the almost two hundred email messages, many cards and the endless supply of food! We are loved and we love all of you for being here.

When Macayla was born, I thought of a possible wedding in the future. Praying for the right man for her. Praying we could pay for the wedding! Praying I could be there to see it. I thought about the day I would walk her down the aisle. Yesterday, I walked my little girl down the aisle. Not the way I expected or wanted. But I took her to the Groom of grooms. Her mother and I gave her away to the best. The Bible speaks in metaphors of Jesus as the groom and the Church as His bride. Macayla had to leave us, but she has cleaved to Christ in the fullest way possible. Thank you all for being a witness and support to Macayla's life and transition to a new life. Thank you all for your prayers and support over the years. Thank you all for just being there, in presence, prayer and thoughts.

Macayla still has a few more things to say. As the next couple of weeks unfold we will try to share those messages. We are still digesting the last two weeks and there are both some medical lessons we can share on the Uncommon Needs blog as well as some testimony to how this process impacts our family and others. Stay Tuned! We love you.

Permission

2010-05-26T06:23:00.002-04:00

Many people have questions they don't want to bother us with right now and we understand that. So let me just answer some of those questions for you.

If you are planning on coming to Macayla's funeral, you have permission to laugh, cry, weep, smile, joke, look around, talk to us or not talk to us, see Macayla or not see Macayla. KIDS HAVE PERMISSION TO BE KIDS DURING THE VISITATION AND SERVICE! You have permission to visit with one another, talk out loud, laugh, cry or just be silent. You have permission to NOT manufacture a mood. Come as you are and as you feel. That's what we are doing. No, we are not trying to make it a festival, but we also are not trying to make it a doom-and-gloom convention either. Again, come as you are and as you feel.

As far as children: if there were ever a funeral appropriate for children, it will be Macayla's. We understand if your child does not want to see Macayla and we understand if they do simply out of curiosity. We are purposefully setting up the visitation as a gathering of friends and family and will make it possible for someone to visit with us and not have to see Macayla. The room will be set up so that they can look at pictures, videos and other things and never see us or Macayla if they so desire. But if they do, the option is there as well. This can be an opportunity to have much needed discussions about life but that is not required. Again, we want kids to be kids. Our son Jacob will be there and we are going to let Jacob be himself. We even have a friend he can go to in case he just needs to get out of the fray and get away for a moment. But if there are other kids there, being kids, then I bet he will probably just want to hang out with them.

We recognize our grief. We miss Macayla terribly. That grief will intensify in the weeks to come as life settles back into some kind of routine and Macayla is no longer part of that daily routine. But we also have much to celebrate and be thankful for. Macayla is a beautiful gift from God. She had many hardships but a smile that melted them all. She is still my little girl and always will be. We celebrate she is whole now. Sure we wish she could have been healed on this side of heaven, but we know her healing in heaven is more complete than any healing here on earth could have ever been. Never forget that miracles are temporary corrections in a fallen world. If we are healed of a tragedy today, it does not mean we are immune to other tragedies in the future. What Christ did on the cross ensures a final and complete healing in heaven and that is what Macayla has. We have much to celebrate.

Thank you to all your prayers and messages. We are so busy with preparations, we cannot respond to them all. Please know we are getting them and we feel the love and comfort. We love you and thank you for everything.

The Post I Never Wanted To Make...but

2010-05-24T15:44:00.003-04:00

Macayla Grace Smoak died May 22, 2010 in her home with her family around her. It was not only the day she was born, but the day she was reborn into a new body and life. There is no more Battens disease for Macayla.

We will have a gathering of friends and family on Thursday, May 27, 2010 at 1:00 p.m. at Edwards Road Baptist Church in Greenville, SC. The celebration of her life will follow in the same place at 3:00 p.m. Burial will follow at Woodlawn Cemetery on Wade Hampton Blvd in Greenville, SC. Macayla is survived by her parents, Jennifer and Jeff Smoak and her younger brother, Jacob. Her grandparents are Brenda and Keith Scott, the late Tony Foster, Harriet Wood, Rodney and Barbara Smoak. The funeral will be CASUAL ATTIRE! That's right, you read correctly, CASUAL attire.

Please, let everyone know that instead of flowers, we would like folks to use that money for things that have great impact on others. Give it to any one of the following: Family Connection of South Carolina, the Make-A-Wish Foundation of SC, Camp New Hope, Hospice of the Upstate, Electric City Fellowship, or Edwards Road Baptist Church in honor of Macayla. You can follow these links and see how to do this.

Thank you all for your prayers and support. This is the one post I never wanted to make. This is the one post I never want anyone to make. But this post is not without hope. This post lets others know that there is a celebration coming on Thursday. It is a celebration of life. Macayla's death is hard, because her life is so amazing.

It is hard because for her to remain means she would continue to have impact on others here. For her to go means she is with Christ and free of the horrible disease that is a product of a fallen world. Do not pity her for she is free. She is whole. She was blind but now she sees. She was lame but now she walks. She was tired, but now she is at rest! She will not come back to us, but, if we know Christ as our Lord, we will go to her someday. We love her. We miss her. I keep checking my watch and walking back to her room to check on her. But she is not there. She does not need to be checked on any longer! No more meds. No more formula. No more needles. No more pain. I never wanted to make this post, but I've always wanted her to be whole and healed. Now she is.

Healed

2010-05-22T23:59:00.002-04:00

Macayla's healing has finally come. She had to do it the way she has often done other changes. She had to wait until I updated the blog! Often I have blogged about Macayla's condition only to have her completely change it the next day and be a different child. Tonight is no exception.

I updated the blog at 11:04 p.m. writing of our uncertainty of when she would pass. At 11:25 p.m. she went home. She just had to get me one more time. Her breathing was much more peaceful at the end. I have ached today more than ever before. I hated to watch her struggle so much. But she made it. She got to celebrate her birthday here with us and now she is celebrating it in heaven! She is whole. She is in the complete rest of Christ. We love her so. I'm not exactly sure how time and space interface with the eternal aspect of heaven, but I know we will see each other again. From her perspective, we may already be there, but from ours, we have to wait. She cannot come to us, but we will go to her. She will remain in our hearts and minds until we are fully reunited again.

This is not the healing we preferred, but it is healing and perfect healing at that. Thank you for all the prayers, love, support, tears, hugs, food, and time you all have sacrificed for our family. We could not celebrate Macayla's life if it were not for our amazing Savior and His people! We love you all.

By the way, Macayla Grace Smoak was born May 22, 2001 @ 7:49 a.m. She died on May 22, 2010 @ 11:25 p.m. She was fully nine years old.

Well...

2010-05-22T23:04:00.002-04:00

It has been a surreal and long three days. Each day we did not think Macayla would make it, but she has kept going. Multiple times today, she stopped breathing for a couple of minutes only to start again. We really thought she would not make it past today, but she is within an hour of getting to May 23rd.

Today was her birthday. We celebrated it last night just in case she was not with us today. Pictures will follow soon. But she kept going. As the day has gone on, her respiration rate has dropped and her heart beat has become very irregular. In fact, it stopped briefly a few minutes ago, but then started again when she gasped. She has kept us guessing and she is fighting to hang on.

Some may read these words and think it is good she is fighting that hard and staying with us. It is and it isn't. We do not want to loser her, but watching her over the last 72 hours has been terrible. At this point, we want her to go home. We want her to be completely healed. We want the struggle and suffering to stop. We love her and have reassured her that we are going to be alright and she is too. Jacob has been handling things at his own pace and he gave us some indication tonight that he is handling things better than we thought. He's such a special man and I am so proud of him and Macayla. She has been his little sister in many ways, but she is his big sister and has really taught him and the rest of us so much.

Please pray for full restoration for Macayla. We know that will mean she is in heaven, unless, of course, God decided to completely heal her here. We'd take it any way we can get it, as long as she is restored. Barring any miracle, Battens is 100% fatal. Nothing we do now will change that. We just want her to be as comfortable as possible.

Home Stretch

2010-05-21T00:32:00.002-04:00

Macayla was a different child Thursday morning. She struggled through the night with some spastic breathing and patterns. By 6 a.m. she had a dusky complexion and blue lips. Her breathing was erratic and just didn't seem "right." Jennifer tried to go to work, but had to turn around before she even got out of Anderson.

Macayla was in fact different. Her blood pressure, heart rate, respiratory rate and temperature were all swinging wildly. Her heart rate changed a lot but stayed between 120 and 160. Her kidneys have all but stopped. Her breathing has become difficult. There has been swelling in her jaw line and tongue as she has retained fluids. Her pulse has been weak in her arms and legs as the circulation is staying concentrated in her trunk. She had a few "peaceful" spells today where she seemed in less distress. But in the evening, her breathing was sounding really bad and I repositioned her a little. She acted as if she was vomiting, but nothing came out. Because of her tongue and her jaw locked shut, I could not suction her for quite a while. She stopped breathing for almost thirty seconds. I really thought that was it. But she slowly started breathing and then went into a big grand mal seizure. I really thought that was it as she stopped breathing again. But slowly she came back.

We had to remove her feeding tube from her belly and suction because she was leaking huge amounts of fluids from her g-tube site. Sorry, that's gross, I know. But she was soaking her shirt and bed and not comfortable. We are keeping the Ativan and morphine going around the clock to make her comfortable. We have been reassured that she is probably fine from her perspective and is comatose. It's worse on us because we have to watch her shut down.

Several times today, I wondered if I were dreaming. I wondered if I would suddenly find myself startled awake in my bed and find it's just another day. But this is no dream. Often, I have heard or read poetic descriptions of death. Death may have a romantic or poetic side, but dying is hideous.

In spite of this, God has been gracious today. Love has surrounded us. We have laughed even. We have peace, and no, we cannot understand it. Peace does not make it easy or give us a whimsical attitude. It just is peace and is present in spite of the pain.

Calm

2010-05-19T12:07:00.003-04:00

Macayla had a more alert afternoon yesterday with a few smiles. She began having a bad breathing pattern as the day went on. It was not as spastic, but was definitely a Cheyne-Stokes breathing pattern (a few breaths followed by a period of apnea). She began to moan and sigh with it some. Ativan did not seem to break up the pattern. Later we gave some morphine and she stopped. She has been asleep for about 16 hours with a good, normal breathing pattern. We will administer Ativan around the clock and the morphine as her breathing patterns dictate.

We know she could go up and down for quite a while. We also are aware she may go home at any moment. Our prayer is to be with her and keep her as comfortable as possible. Our prayer is she will know we are near and that Christ is ever present. We hope to celebrate her birthday Saturday and in honor of her we will eat Zaxby's or Papa John's or one of her other favorite foods. I will try to keep the blog up to date, but can't make promises. Nor can I promise it will always make sense as my vocabulary, grammar and spelling reflect the sluggish condition of my mind right now. Thanks to all for the prayers and support. Our family is so blessed by you all.

Hospice Roller Coaster

2010-05-18T05:49:00.004-04:00

Macayla's weekend ended up worse than the week. She ran a fever on Saturday morning and we thought it could be the start of pneumonia from aspirating. Her chest xray came back negative and her urine, ears and sinuses were all clear as well. Her fever went away quickly and she even felt good Saturday afternoon.

Sunday evening was a different story. She started throwing up and would not stop and struggled to recover. Jennifer called me home from a Bible study because she couldn't get Macayla stabilized. Fortunately, Macayla recovered before I got home. But she started again shortly thereafter. With that spell, her breathing became labored and spastic. Her fever went to 103.2 and stayed there in spite of tylenol. Her blood pressure and pulse stayed elevated. Her breathing spasms also had a pattern of several quick, deep breaths followed by a spell of apnea. There is a medical name for this pattern, but I cannot remember it. With the spasms she moaned and sighed a lot and was very uncomfortable. So, we gave her morphine. We honestly thought it would be a while before we would ever have to use it. The morphine is to not only help with pain, but breathing spasms as well. Unfortunately, Macayla did not seem to respond at all to the morphine. Her fever continued with a little fluctuation up and down throughout the night. Her pulse stayed elevated. The spasms continued and more vomiting occurred around 2 or 3 a.m. Around 3:30 or 4 a.m. she finally seemed to calm down and the fever and spasms subsided. The pulse rate came down as well. She vomited once again around 8 a.m. but it was not as violent as the other times.

We honestly thought she was not going to be with us by morning. It was a hard night. But she settled down and pretty much slept all day. She has repeated the breathing pattern, but not had any more of the spasms. She made it through last night well and we all got to sleep. Hospice told us that children are hard to read in these situations. If an adult was doing what Macayla was doing, they would say the person was down to days or hours to live. But children can have these spells, bounce back for days or weeks and do it all again. It is a hospice roller coaster.

The cause of all these symptoms seems to be that her brain stem is being affected by the disease. Her hypothalamus could be causing the fevers and the brain stem is in charge of all the basic, automatic functions of our bodies. It controls breathing, heart, bladder, blood flow, etc. So, we are in uncharted territory now. Her symptoms have been changing on a weekly basis over the past couple of months. Some weeks bring big changes and some very minor. But she has not been in a real pattern or plateaued in her digression since Thanksgiving. It has been a steady decline.

Her birthday is coming up on Saturday and Jacob's is the following Saturday. She will be nine and he will be seven. For Macayla, there could be no better birthday than one in heaven, complete and whole. But my heart's desire is for her to celebrate it here. It's selfish, but I want her with us. A great friend reminded me that Jesus also prayed that He would not have to go to the cross. He endured it for the joy set before Him (see Hebrews), but He still prayed in the garden for another way. In the end He said, "Not mine, but Your will be done." Or as my friend said, "This is what I desire, but Father, You know best." So we will continue to pray for healing and comfort. We will also pray for continued peace no matter how Macayla is healed, with us or in heaven.

Rough Week

2010-05-15T05:47:00.002-04:00

Macayla has not had a good week. Friday was the only day she did not throw up. She has been asleep most of the week with a few spells of semi-consciousness. Her bladder has been sluggish the last two days. Once again we are never sure if medications are making much of a difference with some of these things. We have had a lot of suctioning to do and she keeps producing plenty of crud to get out. With all of the vomiting, she runs the risk of aspiration and that could lead to pneumonia. So we try to keep her cleaned out.

She was out and unresponsive all of yesterday until around 6:30 p.m. and I got a few smiles. She half opened her eyes. But the smiles were strong. I just pray she knows we are here with her and that we can make her as comfortable as possible.

Need Something To Read?

2010-05-10T13:21:00.004-04:00

In case you need a bit of something to read, might I suggest the following magazine:

Specifically, June's issue. It has some great articles, including a feature about Steven Curtis Chapman. It also happens to have an article written by SOMEONE YOU KNOW on page 28-29. You don't have to subscribe (though it would be worth it). You can just order the June issue online or go by your local Lifeway store and pick it up. Enjoy!

Special Needs Adoption - Dog Adoption

2010-05-05T14:08:00.004-04:00

Jennifer and I have always talked about adoption. We wonder if that will be something we do at some point. We also wonder if we would adopt a special-needs child. We feel drawn to them, but we also hesitate knowing all too well what it would mean. But, in the meantime, as many of you know, we adopted a dog. Lily has been a great addition to our family. But it seems that our dog is a special-needs dog!

She has mange, which is common enough, but I never knew it was a genetic immune disorder! All dogs have mites and usually without issue. But if a dog has a suppressed immune system, they cannot resist the mites' impact. Further, it appears Lily is having short, focal seizures! Yes, seizures! On Jacob's page, I wrote about how much Lily and Jacob have in common. Well it appears she is trying to be like Macayla as well. Oh, and I say this sort of tongue-in-cheek, but Lily is trying to be like me and have sleep apnea! She is the first dog I've ever seen at the age of one who will fall asleep sitting up even when she is begging for food. How did we get a special-needs dog?

Wish I had One of those Star Trek Thingies!

2010-04-29T05:30:00.002-04:00

Star Trek came on in the afternoons when I was a kid. I can't remember which of the three channels it aired on, but I loved watching it. Dr. McCoy always carried a little medical scanner with him on trips down to the planet surface. It could diagnose any problem without surgery or invasion of the patient. I wish I had one of those!

Macayla is doing well over all, but I must admit that my definition of "well" is not fixed. For her, "well" means she has not thrown up or had many seizures and her breathing is good. She has been a bit more interactive the last couple of days, but that tends to increase seizure activity. One interesting observation: she gets a twitch in her right thumb anytime she has a seizure, reacts to stimulus or her facial expression changes. Her face still goes back and forth from pale to flush at times. Her cough reflex seems weaker and the swelling that was in her feet seems to be more in her legs now but not as pronounced. Her left hip is going in and out of joint, though it does not seem to be causing much discomfort at this point. All of this is why I wish I had Dr. McCoy's medical scanner thingie! I wish I could just see what is happening on the inside, measure pain and discomfort, and know better what helps and what hurts. But we will be waiting a while on those. In the meantime, prayer, hugs, kisses and medications are all we have.

So many sci-fi movies last century predicted we would be traveling in big cruisers to other planets by 2010. We are a little behind schedule. But I think we should develop all of the Star Trek gadgets before we build a starship. Give me a medical scanner thingie and a phaser! Ooh, and a "tricorder" and a transporter and a...

Job's Grief

2010-04-18T10:45:00.002-04:00

Macayla has not given us a reliable pattern or behavior. Her vomiting has not been as predictable as we would prefer. The times when she is most interactive are unpredictable. Her throat is weakened and causes gagging quite a bit. It is sad to watch and often we feel helpless to do much for her. We take some comfort in the fact one of her new medicines, Lorazepam, seems to help keep her comfortable. We just wish we could do more for her.

I've been studying the book of Job lately. It is a difficult book to study and there are many facets to consider. God's sovereignty, the nature of suffering, counseling, and grief. We have bouts of grief quite often. We speak about it and even rage through it. Job spoke of his grief in powerful ways. He wished for his own death because his suffering was greater than most of us could even begin to fathom. His friends tried to correct his words and thinking in the midst of his grief. (Not a good way to start off counseling). Job's response resonated with me. "Do you intend to reprove my words, when the words of one in despair belong to the wind?" (Job 6:26) Sometimes we just need to vent our grief. We may even speak wrongly or incorrect theology in those moments. In Job's case it is notable that God later said Job spoke correctly and his friends did not. But spoken correctly or not, we may need to speak, rage, vent or cry through our grief. Job's friends did the most good when they were just there and kept their mouths shut! They messed up when they tried to explain God's motives to Job.

This weekend, we had friends and family come to visit. Friends from our church in Greenville and here in Anderson. My family from Aiken came to visit. Lately, my grief has been palpable and at times overwhelming because of all the changes in Macayla. This weekend has been a blur but comforting. Having friends and family here to just hang out, eat with, and love on was one of the biggest comforts there is. We spoke about things, though I can't remember exactly about what. We joked. We hugged. Did I mention we ate? We enjoyed watching the kids play and the dogs run themselves into exhaustion. Everyone got to see Macayla and love on her. It is amazing how stupefying grief can be. I really feel like I was only half awake in my interactions with everyone. But I woke up comforted this morning. The exhaustion is still here in spite of sleeping 13 hours last night! But God's comfort has been passed on through His people. Thanks be to Him and all who He worked through this weekend.

Beyond the Smiles

2010-04-08T07:04:00.003-04:00

Macayla has had more days of sporadic vomiting, but she has also had some great moments of interaction. Last night she smiled and cooed with me. She looked like she was about to burst in laughter. These moments of interaction have lasted for about one to three hours at a time and she sleeps otherwise. The latest exception to this was Monday night when she did not sleep at all. She was awake and interactive. We gave her some medication to help stop her jerks and twitches, but it did not put her to sleep. So, I got most of the night Monday to interact with her and she slept for most of the next 24 hours.

Her smile is one of the most beautiful sights on the planet. It's a beauty that is beyond the surface as I cannot seem to catch it with the camera. Photos of her in full smile do not communicate it. There is something about the live event of her smile that gives you the full experience of beauty. It lets us know that she's still there and in spite of everything, she will be alright when the dust settles. For "in all these things we (followers of Christ) overwhelmingly conquer through Him who loved us. For I am convinced that neither death nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is Christ Jesus our Lord."

Autonomic Nervous System

2010-04-01T10:01:00.002-04:00

It is amazing to think how wonderfully and fearfully we are made. Macayla's recent symptoms has educated us on part of the nervous system we have never given much thought to. Really, we don't put any thought into this in our own bodies. The autonomic nervous system works "autonomously" to control our bowels, bladder, blood vessels, stomach, etc. The signals just go on their own without us having to think about it.

For many months now, Macayla has had spells where her face would become beat-red or deathly pale regardless of her temperature. Her bladder function has often been sporadic. Over the past week, she has had spasms in her abdomen and swelling in her feet and hands as well as vomiting. Our neurologist had us draw blood yesterday to check her Depakote levels and amylase to check for pancreatitis (a side effect of Depakote, also known as Depakene or valproic acid). Her levels were normal and her Depakote was not even high enough to be therapeutic. So, it needs to be increased.

So, now our best guess is that her symptoms stem from the autonomic nervous system not functioning as well. It would explain why her bladder functions fine for weeks then suddenly stops for a day or two. It would explain the color change in her face as this system can constrict or dilate the blood vessels there. It is this system that makes us blush. It would explain the swelling in her feet as signals are not making it through to move fluid around properly. The amazing thing about this system is that the signals sent from our brain travel part of the way via nerve pathways and part of the way through chemical mediators. The type of action stimulated by this system depends on which chemical is used. One chemical causes blood vessels to constrict while another causes the vessels to dilate. One cause the bladder to contract while the other inhibits the bladder. When these chemicals are out of balance, problems start. The system is controlled mostly by the hypothalamus which is near the brain stem. If there is a problem in the hypothalamus, obviously there will be problems in the system. It is a wonder any of us function properly. In fact, I think it is a miracle.

But the sadness here is that if Macayla's autonomic nervous system is being impacted, then the deterioration is reaching her brain stem and the nerve pathways to these basic functions. It means her heart and lungs can be impacted. It means she may have symptoms such as vomiting for which there will be nothing we can do to bring comfort. It means we are facing what we dread.

But we know that the God who could create the amazing bodies he gave us has a plan. He will weave our lives and decisions into that plan. He will not allow Macayla's life to be wasted. He will heal her of these things, either while she is with us or when she is with Him. That's what this weekend is all about. Christ defeated death and sin at the cross and tomb. Now we truly only have to walk through the valley of the SHADOW of death and not the valley of death itself. He has promised, when this amazing plan of His is complete, that those who belong to Him will see the full victory. Even death's shadow will be destroyed by the light, love and life of Christ. This same God has promised to hold our daughter in His hands. Thanks be to God!

Crossing A Line

2010-03-22T07:37:00.002-04:00

For several weeks now, Macayla has been sleeping more and less responsive. At first we thought it may have been related to medicine changes, but it does not seem to be now as her initial levels were low and she even perked up a bit after being on the meds for a while. We get about six hours of awake time in a twenty-four hour period at best. Even then, she can be slow to respond at times. But she still smiles often and she still seems to recognize our voices.

Unfortunately, she started retaining fluid in her feet this weekend. We are not really sure why, but she has never done this before. The swelling is minor right now and does not seem to be causing any discomfort. Overall, we seem to be crossing the line over into the vegetative realm. It is hard to qualify or quantify a vegetative state in these cases according to our neurologist. He told us that usually a vegetative state occurs when someone suffers a brain injury that causes a coma and then they come out of the coma into a vegetative state. Macayla is coming to it from the other direction. She is descending into a vegetative state and doing so slowly. So, she may be out of it but still give us smiles. It is not like a switch is suddenly going to be flipped and she change her status. Instead, the times we have with her awake will grow briefer and further apart. Of course, we hoped we would never have to cross this line. We hoped Macayla would stay alert until the end, but that may not be as good for her. It is hard to know for sure, but being vegetative could make her less aware and that may make things less frightening for her when they come. How I wish I could just make it all better for her.

The latest change that seemed confirmed for us last week was that she had multiple little (short in duration) seizures on Wednesday that involved her eyes, arms and legs and at the end of each one she would gag as if someone were sticking their finger down her throat. We suctioned but got nothing because there was nothing there. It confirmed for us that sometimes her gagging is seizure related. Either the throat muscles are contracting with the seizures and closing her throat, or there is a loss of signal and it causes the muscles to go floppy for a moment. It's hard to know, but we are starting to see some differences between gagging that is caused by mucus and gagging caused by the throat not staying open.

We appreciate any prayers for strength and comfort.

Feel Like a Kid Again

2010-03-19T14:42:00.006-04:00

There was a quiet moment this morning in our house. Mainly because Jacob was not here and the dog was outside. There was no TV or music. I was standing in the kitchen and morning sunlight filled the sink from the window above it. The faucet was running and gave off a residual mist that glistened in the light. There was a fly buzzing around. I turned the faucet off and listened to the quiet and the fly. I suddenly remembered being a four year old in my great-grandparents' home. My sister and I used to stay there in the afternoons. It was a shoebox of a house, but at that age it might as well have been a mansion. I remember playing on the floor in the dining room while sunlight would stream through the curtains. I was chasing a buzzing fly around the table and chairs. My running stirred up dust and the little flakes and particles glistened in the sunlight. It almost seemed like pixie dust floating in the air. I tried to catch them but they disappeared as soon as my hand got close. I blew them and they would swirl wildly on my breath. Then the fly would buzz nearby and I left the magical particles to find the amazingly agile insect. I could fill many hours in their home on the simplest things in complete wonder.

How often do we miss what children see so clearly? Flies and dust are disgusting to me now, but they were sources of such wonder and exploration as a child. Ravi Zacharias wrote a book called Recapture the Wonder. It is book for most audiences (not as academic as some of his other work) and it addresses this very problem. I call it a problem because when we cease to see the wonder around us, we will miss the One it points to. Jesus said we are to come to Him like a child. He does not mean for us to become childish, but child-like. Child-like does not mean we simply believe everything we hear. This is not a call to "blind-faith". It means He wants us to see the wonder of what is around us, explore it and see how it leads us back to Him. We can peer into His word with fresh wonder and not guilt-driven, self-righteous labor. We can wonder and exult in the hope that comes to us through Christ, even in the midst of suffering. Suffering. That is the stuff adults warn children about when they get "into the real world." Children are in the real world and they often see it clearer than adults. Adulthood seems to muddy the water with cynicism and disappointment. I thanked God today as I heard the buzzing fly and saw the streaming sunlight. I thanked Him for Romans 5:1-11. Check it out.

As I finished typing this, my beautiful wife just brought me an ice cream cone. Boy, I feel like a kid again!

Mac & Lily

2010-03-06T08:14:00.004-05:00

Cast Off and Adoption

2010-03-03T12:14:00.004-05:00

Macayla had her cast removed on Monday. She is stiff in the elbow and a bit sore, but good. Unfortunately, we think she had a seizure Monday afternoon/evening and she just had another a few minutes ago. She will hopefully stay passed out for a while and have no more. But we are glad the cast is off and she can get back to moving her arm again. She may never regain full extension, but that is o.k.

In the meantime, we have adopted a one-year-old named Lily. She is beautiful and her hair is almost white and she has beautiful dark eyes. She also has four paws and a tail!! She is a lab mix and has been a huge source of excitement for Jacob. She came home from the animal shelter yesterday and seems to be adjusting well to her new abode. She doesn't seem to want to chew on much except what you give her and is not too big and not too small. Jacob has been loving on her a bunch and didn't want to go to school today because she was here. But she went along with us to drop him off and he liked that.

Macayla is a trooper, but I just wish we could make it all better for her. Her smile is still there and she responds well to us and even to Lily. Lily has been interested in Macayla, but seems a bit nervous to explore the house so she hasn't been in her room too much. Lily didn't know how to respond when we suctioned Macayla during the seizure a few moments ago. I am curious to see how the kids and the dog grow in their relationship.

Forgiveness

2010-03-01T15:02:00.004-05:00

I met a man who, as he learned about Macayla, shared he had lost a daughter to a rare condition several years ago. His comment was, "I guess that was God's way of punishing me for my past." I listened to his anguish. He was not a church-goer or anything, but he believed there was a "God" somewhere "up there" who was mad at him.

Often we fall into two extremes when it comes to our past and present sins. We either forgive ourselves too quickly or not at all. Sometimes we may be too quick to dismiss our immoral actions and never take accountability for them. This, of course, breeds further problems. But we may do the opposite and never forgive ourselves or believe that God could really forgive us. Our choices and actions impact us and those around us and sometimes with devastating results. We may never share with anyone the guilt we carry around. This guilt can become a barrier to truly accepting forgiveness from God, others or ourselves. To be sure, guilt can initially act as a conduit to bring conviction and change. But when there is only guilt, it is neither healthy nor helpful to our transformation. I even think there is a difference between, regret and guilt. Regret, as I mean it here, is the desire that we would have done things differently. Guilt is the weight of our culpability in the things we regret.

Forgiveness from God is an act of His grace. He extends forgiveness when we repent from our sins and realize that He paid for those transgressions at the cross. We cannot earn it. Our good deeds do not cancel out our bad deeds. God is not grading us with a set of scales, waiting until our good deeds tilt the balance, making us worthy of forgiveness. In fact, none of us are worthy of forgiveness. But God saw fit to extend mercy through Jesus Christ and for those who receive this gift there is no longer any condemnation. It's amazing how the God of the universe will forgive us, but we cannot forgive ourselves or others. Maybe it's because we think of God as some warm and fuzzy grandpa in the sky and think he is obligated to forgive. But God exercises real justice for those who have sinned. He is no pushover and he does not wink at immorality. If He can forgive us, then we can forgive those who have hurt us. If He has forgiven us, then we do not need to live under the weight of endless guilt. Yes, we will still have regrets, but healthy guilt will be replaced with conviction and change if we truly trust God's grace.

I tried to assure the man I spoke with that his daughter's death was not a punishment doled out by God for past transgressions. If God punished each of us for our sins, we would all be dead for that is what we deserve. I tried to assure him that God poured His just punishment on Jesus Christ on a hilltop just outside of Jerusalem's walls. But, this man could not let go of the guilt. Guilt did not lead him to Christ, but kept him from Christ. It is a sad thing when we think our sin is bigger than God's mercy.

Just A Few Pictures

2010-02-28T06:07:00.004-05:00

Week of Parables

2010-02-26T19:04:00.004-05:00

I just spent most of the week in Columbus, GA preaching and teaching at a church where a friend of ours is pastor. Jennifer and the kids did great overall with the exception of Jacob having a stomach virus. I just hate I missed that! (note the sarcasm.) But he was in our bed when it happened, so we have new pillows and a new mattress pad. It was profuse and Jennifer could not get them clean. I really hate I missed that! (again, note the sarcasm.)

Macayla did well, but she slept a lot. She had another increase of medicine over the last ten days and I think it is making her sleepy. Thankfully, her seizure activity has been reduced. I really missed the kids and Jennifer while I was gone and it was hard to leave. Macayla was having episodes of choking all day Friday and Saturday morning before I left. The episodes may have been seizure related. It was as if she were having myoclonic jerks in her throat that made her unable to handle a normal amount of saliva. We gave her an extra dose of Clonapin and turned her on her side and she did much better. She did well and I was grateful to scoop her up when I got home. Jennifer was able to relax when I got home by going to work today. We are all back in our element now and moving along.

I was able to spend several days teaching through the parables of Jesus recorded in Matthew. It is a challenging study for these are the teachings Jesus used to separate the disciples from the crowds. In fact, there are a few places where Jesus even used a bit of sarcasm to get his point across. (I guess I can relate to those kinds of passages!) The parables reveal our tendency to fall into religion instead of a relationship with Christ. They reveal our values or lack thereof. They also communicate God's endless grace and its power. They reveal God's present mercy and a future of promises fulfilled. They reveal that we come to God on His terms, not ours. He loves us as we are, but He loves us so much He won't leave us the way we are. They reveal God's plan for our transformation. It was a great study spent with great folks. I learned a lot from both the Scripture and my time with these well-seasoned Christians. Thanks to the Lord and Waldrop Memorial Baptist Church for the opportunity.

Macayla's Grace

2010-02-14T06:21:00.002-05:00

I sat down to update this blog and was about to write how Macayla seems to have finally found some rest after staying awake most of the night. I was about to write how she finally sounded like she was breathing fine and didn't need suctioning for the thousandth time. I was about to write about how peaceful she looks. But she came out of sleep to cough and sputter once again. I just wish we could make it better.

She's had a better week overall. She's been on an every-other-week schedule with seizures and this past week was her week to have them. But, at the suggestion of our neurologist, we increased her morning dose of Clonapin to help control her myoclonic jerks. It seems that if we control these early enough she does not progress into full seizures. So, each morning this past week she would wake up with significant jerking and I gave her the larger dose of Clonapin. Within two hours her jerking would slow or stop and we saw no large seizures. But, she has struggled with drainage and mucus making it hard for her to breathe well. She coughs a lot and we have to suction often. We do not pull a lot out of her with suction machine and she seems to be choking on less material than normal. This may be a consequence of the Clonapin as it may be making her throat muscles more relaxed and less able to deal with the amount of mucus she normally can handle. It becomes a balancing act of controlling seizures vs. letting her have stronger throat muscles.

Still, we will take the good we saw this week. She smiles in response to our interaction with her. She will even coo and wiggle in excitement. Even now, she is smiling with Jennifer as she does some chest PT to loosen up any junk in her lungs. I'm watching them on the video monitor. Macayla's smile is such a sign of her grace. She certainly has limited understanding at this point, but she maintains that smile. I would not be so composed. But it reminds me of another kind of grace, the one Macayla gets her middle name from. God's grace. His unmerited favor and blessing. His grace is the only way our family makes it through this. His grace gives strength we do not possess. His grace not only saves us from our sins, but teaches us to avoid sin in the future. His grace is a promise of ultimate healing and fulfillment. His grace reminds us that we are not alone. His grace moves us and others to help one another. Macayla's name is a phonetic spelling of Michaela, the feminine Hebrew for "Who is like God". It is the name given to the archangel Michael in Scripture. Macayla's life is a reflection of God's grace and she too is a messenger of His grace. Thus, her middle name is fitting. Macayla Grace is certainly a reflection of God's grace, power and love.

Hopefully Getting Better

2010-02-06T08:39:00.003-05:00

Macayla had a better week as far as seizures are concerned. For the past couple of days she has had more jerks, but they have been small. Her new medication may be helping, but we cannot be sure. We will continue to work her up to a therapeutic dose over the next couple of weeks. Once we reach that dose and stay on it for a while, then we will be able to see if it is helping.

Her arm is getting more comfortable and she has been quite smiley this week. Unfortunately, her bladder has been slow the last couple of days. We had to catheterize her yesterday and so far today she has not gone on her own. In the past this has been connected with increased seizure activity. Considering the increased jerking for the last three days, it's a "wait-and-see" kind of thing.

We are thankful for the prayers, thoughts and messages of so many. It's hard to see your child in pain and frustrating when there's nothing you can do about it. The reality of Macayla's progression has also been on the forefront of our minds with recent doctor appointments and some of her changes. It's daunting to have to think about setting aside part of your tax refund for future funeral costs. It is saddening to realize Macayla is increasingly less comfortable traveling and more comfortable at home. She is slowly becoming vegetative and we want her experience as much as possible for as long as possible. There is no way we can do this on our own strength.

There is a cliche among Christians that goes "God doesn't put more on you than you can stand." Unfortunately, this cliche is a misquote of 1 Corinthians 10:13. The actual text says God will never let you be tempted beyond what you can stand, that He will provide an escape for you. It's about the temptation to sin, not circumstances, and even escaping temptation can only be accomplished by God's grace. If the cliche, "God doesn't put more on you than you can stand" were true, many people would look at their circumstances and think, "God must hate me because I definitely have more on me than I can stand!" In fact, we face circumstances we could never face on our own. Christians are not immune or exempt from suffering. But it is in the circumstances we cannot handle we see God more clearly. His strength is made perfect in us in the midst of our weakness. We are sustained in our situation by God's strength and we find that strength through His Spirit in us, His word, and from the prayers and support of His people. We thank God for Him and His people!

Not a "Humerus" Week

2010-01-30T05:41:00.004-05:00

Macayla's arm is broken! She was getting a bath and as we were repositioning her there was a loud pop. Macayla did not flinch or seem in distress. We checked her shoulders and hips and everything seemed fine. We commonly hear pops in her joints when moving her around. She did not show any signs of pain and even smiled when I talked to her. She seemed to be a bit sleepy, but she has continued to have "big" seizures this week and we attributed her lethargy to those. But about an hour later, our nurse checked again and noticed Macayla definitely had a break above the right elbow in the humorous, make that humerus. That's the big bone of the arm. She was reacting to it and was in definite pain. The swelling began.

Unfortunately, Macayla continued to have seizures throughout the day along with a lot of myoclonic jerks that affected her arms, head and legs. The jerks hurt the arm more. Fortunately, xray confirmed the bones were not displaced so they were still lined up. It was a spiral fracture caused by twisting. We still don't know how that happened. We are thankful for our nurse's attention to detail. She has a special-needs child of her own and understands non-verbal cues intuitively with Macayla. Now Macayla has a bright green cast on her from the armpit to her fingers. Jacob is excited to sign it once she is not so tender. But the myoclonic jerks continue and even in that arm. We are trying to keep the pain meds on board as the cast immobilizes, but it cannot stop the muscles from jerking. Our prayer today is that the seizures would stop.

The neurologist has changed her medications in hopes of getting better control of the seizures. It will take about a week to get her built up to the full dose of Depakote. We used it about four years ago and it did not help. But then she was only having petit mal seizures. Her seizures are different now and hopefully the Depakote will be a good match for them. Historically, Macayla has shown improvement with medication changes for a "honeymoon" period and then her condition returns to its previous level. The meds have never kept up with her seizures. But this girl is full of surprises so we will have to wait and see.

She is smiling and happy this morning and we will do our best to help her stay that way.

New Ground?

2010-01-27T05:03:00.002-05:00

In the previous post, I mentioned Macayla had a seizure and was passed out. That was on a Tuesday morning. She kept having grand mals through that following Friday! Mulitple each day. Last week she was pretty clear until Saturday morning she had a short one, but it was not bad. But she has struggled more than usual with breathing and processing saliva. She gagged and choked a lot Sunday and Monday of this week. At times she would turn blue briefly. The strange thing is that a majority of those times we would not get any thing out when we suctioned her.

We also noticed she would sound raspy or gargle when breathing in but not out. So, we are beginning to think she may be losing a little tone around her airway. It may be the actual muscle tone or it could be a signal not coming from the brain properly. If it is a signal problem, it will probably return and go away several times and to varying degrees. So, if that is the case, we are going to explore what options we have to make her most comfortable through those moments. This is a common progression in Battens and other progressive disorders. One option may include using a CPAP to keep enough pressure in her airway to help hold it open. Interestingly enough, I was just diagnosed with sleep apnea and will have to be fitted for a CPAP. Macayla and I might be twins! However, there are some drawbacks to a CPAP for Macayla such as the mask irritating her face and not staying in place when she wiggles in the bed. The mask can rub and irritate the skin and cause breakdown. (Maybe I don't want one either!) There are nasal cannulas but she keeps her mouth open all the time, so those probably won't work. But, we have to observe more prior to making any steps in this direction.

She breathed better yesterday, but was exhausted from the previous two days and nights of struggling. She slept through a better part of yesterday and last night. Today, she will see her neurologist for a six-month checkup. We are hoping to learn a little bit more about what these stages can look like. We may see our genetics doctor next week. He's great to discuss these types of challenges with and what decisions we may need to make. This may be new ground or just a bad week or both. By the way, as I'm typing this, she just sneezed and it made her smile!

We are praying for wisdom and discernment and her comfort and healing.

Last January

2010-01-12T10:31:00.003-05:00

Last January was a rough one for Macayla. This one has been much better by comparison. In fact, the nurse manager from our nursing provider saw Macayla on a visit last January and a couple of months later confided that she was not sure she would see Macayla again. So, we are thankful we have done much better this year!

But we have had the usual holiday/end-of-the-year changes. Mac had five grand mals Thursday/Friday and had another one this morning. She is passed out for now, but we'll see how she does when she wakes up. This January has had a lot less seizures and a lot less catheters than last January. But it is always difficult to assess where Macayla is on her journey. It's always new territory for us and her. We wish we could know more about what she feels and thinks. We know she responds to our voices and we can get her to smile with specific sounds and touches. She even laughs some. I just wish... it goes without saying. One day, that which we most hope for and desire will be realized. There will be no more Januaries to worry about. Faith, hope and love, all three live, but the greatest is love. Because of Christ, one day we will see fully and Macayla will be whole. Love is the greatest because that's all we will need then. Our faith will be fulfilled. Our hope realized. All that will be left is love expressed in eternal worship and fellowship with our Creator.

The Teacher

2009-12-31T10:02:00.005-05:00

Sonny and Cher tried to capture the idea in their hippy way with "The Beat Goes On." The Byrds quoted it in their lyrics to "Turn, Turn, Turn!" The new year is upon us and this used to be a big deal to me in younger years, but now it simply means I have to be careful how I write the date for the next month. It used to mean new-years resolutions I would never keep. Now it means if I am not doing it already, there is nothing magical about January 1st that will make me start. It used to mean parties and the pursuit of debauchery, but now it means the pursuit of dinner, put the kids to bed and hope for a good night's sleep. It used to mean new possibilities, but now I see that any day is a new possibility and a gift from God.

We are blessed to have another year in marriage, and two wonderful kids. We are blessed to have had another year with our family. We have lost some family and gained some family. We have gained new friends. We have gained a few pounds and some gray hairs. We are blessed to know that the challenges we faced have been used by God to grow us and impact others. What does 2010 hold? The same as 2009. God will be in the midst of the circumstances that ebb and flow, change and challenge. Macayla will continue her digression. We do not know if she will see 2011 (in fact it is December 31st so 2010 is still in question), but she is full of surprises and God will be in them.

Long before Sonny & Chere or the Byrds, the Teacher captured the wisdom of ongoing time in the book of Ecclesiastes.

"There is an appointed time for everything. And there is a time for every event under heaven - A time to give birth and a time to die; A time to plant and a time to uproot what is planted..." Ecc. 3:1-2 NASB

The ancient Teacher who wrote Ecclesiastes saw the endlessness of pleasure seeking and that there truly is nothing new under the sun. He concluded rightly that wisdom is found in the reverence of God and following His commandments. My prayer for the new year, the new day, today, is that I will seek Him and follow the path He has for us. In spite of all that "changes" and repeats itself, Christ is forever! He does not change, but we need to and I thank Him for it.

Weekly Seizures

2009-12-20T17:48:00.002-05:00

Macayla has been having grand mal seizures weekly now for the last three weeks. Today she had one after lunch and is finally passed out from the Diastat. We think that if we give her Diastat immediately after the first seizure she will pass out and not have any more. The last time I waited to give it after the second seizure (which is what you're supposed to do) she kept having them every two hours. Now, we just hope she will wake up seizure free.

Interestingly, this seizure started slowly and in a different way than usual. It was good because it gave me enough warning to get a chux pad and the suction machine ready in case she threw up at the end as she typically does. Fortunately, she did not throw up but kept having bad reflux for a while afterward. It's just more of the changes we see in her at this time of the year.

Merry Christmas in the Midst of the Yuk!

2009-12-09T09:22:00.003-05:00

We certainly are a pitiful bunch in the Smoak house. Jennifer had a low-grade fever all last week but the docs could not figure out its cause. We think it was a sinus infection, but because of her symptoms, the hospital would not allow her to come back to work for seven days. Jacob brought home a virus from school and threw up quite a bit on that Friday. Not a fun way to start the weekend. After the weekend was over, I had the virus and twenty-four hours later Jennifer had it. Just in time for her to go back to work and she couldn't! All of our taste buds have been off ever since and Jacob still doesn't have his appetite back. Macayla has avoided it so far, but she has had some dark, puss-like ooze coming from her right ear. She has not had a fever but the ear is very sensitive and causing her pain. We started an antibiotic/steroid ear drop this week. After 36 hours the dark ooze has diminished. But we still have six more days of drops to administer. Her secretions in her nose and throat are still out of control and we have to suction her a lot as she is coughing and gagging so much. I wish I could make it all go away. Of course, none of my "old geezer" problems of gout or joint pain in my hands have ceased. My doctor wants me to get a sleep study (actually Jennifer wants me to more due to snoring!) and a nerve conduction test done as well.

Jennifer's grandmother and my grandparents are all experiencing failing health. Jennifer's grandmother is in the final stages of cancer and we are not sure how long she will be with us. My grandmother is struggling with Parkinson's and dementia among other things and my grandfather struggles to care for her.

In spite of these things, I have been more in the "Christmas spirit" this year than usual. I have to admit that past Christmases has been anti-climatic for me. As a believer, Christ is always with me and His grace is always a present gift. Don't get me wrong, I love the time with family and the wonderful feasts we have together, but the holiday itself has not been as captivating as it has been this year. I have experienced a hope and peace that indeed surpasses understanding. This is not to be confused with "positive thinking." In the midst of these things, I never consciously decided to utilized the so-called "power" of positive thinking to wade through. So many self-help gurus push people to smile their way past problems instead of actually dealing with them. No, we still have to deal with the vomit of stomach viruses, dying loved ones, and Macayla's annual end-of-the-year digression. It's just that Christ has reminded me once again that He is with us in the midst of it. He doesn't invite us to escape the struggles, but to face them; with His strength and for His glory. There was no room for Him at the little inn of Bethlehem, but there is room for Him in our hearts and minds. But so often I put him in the stable out back instead of giving Him his rightful place on the throne. The presence of His peace and joy this season has reminded me of His rightful place. Wise men still seek Him and even lowly shepherds can share the Good News.

What I Was Going to Say...

2009-11-26T05:49:00.002-05:00

I was going to post an update and say how Macayla has had a great, grand-mal-free week and she seems to be on the mend. I was going to write how she seemed to be more herself this week. But this morning she showed a sign of seizure activity. She started pursing her lips repeatedly and that seems to be associated with the start of grand-mal seizures. So, I'm not going to write what I was planning to write. I'm not going to say we are out of the grand-mal woods yet. For, she may be starting a weekly pattern instead of a monthly one. If I don't say what I was going to say, will it help things turn out the way that I was going to say they would? Well, I don't believe in jinx but I certainly think we can say things hastily out of our lack of knowledge only to be proved wrong by the future. So, I will just be satisfied to say that today, Macayla has started off happy with a few signs of neurological issues, but thankfully no seizures yet.

We are thankful for this amazing girl and her brother. We are thankful for the God who gave them to us. We are thankful he gave us each other. We are thankful for the amazing blessings he has put in our lives. We are thankful that he is patient, merciful, loving and just. We are thankful for how he teaches us through our children. We are thankful that he loves us as we are AND that he loves us so much he won't leave us the way we are. We are thankful for what he did at the cross and that there is no condemnation for those who are in Christ. These things are not said in haste and the future will prove them correct as the present and past already have. Today, we give thanks to the One who gave us abundantly more than we could imagine. That's what I was going to say.

She May Be Done

2009-11-21T05:26:00.002-05:00

As of last night, it appears Macayla's seizures stopped. We will see how she is later today. She is just beginning to wake up which is a good sign. Yesterday morning she was post-ictal and would not wake up. We are getting her Lamictal switched back to the brand name instead of the generic. We actually started that last night, so hopefully we can see some improvement.

She was in a good mood last night. She laughed some and fell asleep right after we gave meds, which is the norm. She had not been doing that on the generic. Granted, there are so many variables with this disease and the brain that we can never be positive if that was the cause, but the timing of these seizures fits with the medication change. So, we will see.

Thanks to the folks who have offered up many prayers and sent messages. We appreciate it beyond what words can convey.

Further Breaking of the Pattern

2009-11-18T20:13:00.003-05:00

You can check out the previous post on this ongoing challenge. Macayla awoke this morning with smiles and even seemed more relaxed. She started getting fidgety around lunch time, but was still very reactive and happy. When seizures are lurking close by, she tends to have increased rigidity in her arms and she purses her lips repeatedly. (I like to think she just wants to kiss her daddy, but in fact it's neurological dysfunction. Of course, Jennifer is probably neurologically dysfunctional since she actually does kiss me!) Anyway, Macayla became more and more rigid and "twitchy" as the afternoon wore on and tonight she had a new kind of seizure. Actually multiple seizures.

She became rigid in her limbs, turned her head to the right and her mouth locked into and "O" position for quite a while. She had little versions of this just before the minute or so long one. She gave little sounds out just before they started. When it was over, she became post-ictal and has been out ever since. The way this presented was different than any we have ever seen. Fortunately, she breathed well through the whole thing and never threw up. So, tomorrow we will get blood drawn to check her Lamictal levels and make sure we have enough on board. We hope she will do well through the night and stay asleep and seizure free until morning. But she is just continuing to show us that Battens is not a disease of patterns.

Broken Pattern

2009-11-17T17:36:00.002-05:00

Macayla has had five grand mal seizures so far today. They started at 7 a.m. and she has not responded to the emergency meds like Diastat and Versed. She is passing out after them for a short while, but as soon as she wakes up, she has another seizure. She even had one while she was still asleep. Fortunately, she has not thrown up much because she hasn't eaten all day. Unfortunately, she hasn't eaten all day. These seizures started off stronger than usual and her oxygen level has stayed low for a greater portion of the seizures than normal. I wish I could snap my fingers and fix it.

Hopefully, she is finished but they have been coming every two hours and the last one was one hour and 45 minutes ago. All of this to say, she had a grand mal last week and now she's having a series this week. The pattern this summer was her series of grand mals would come once a month. Thus, we think they are hormonal. It was unusual to have these a week apart and for her to have a different oxygen saturation. But in the bigger scheme, historically, the disease has progressed between Thanksgiving and Christmas each year. She may be following that pattern. Then again, our insurance said they would only pay for the generic version of Lamictal and that started last week. In the past, the neurologist insisted she be on the name brand. We will have to get the neurology office help us to see if this minor change could cause an increase in seizures. There are so many variables and pseudo patterns in this disease, it's hard to keep up.

Miss Hyper and Happy

2009-11-12T20:49:00.004-05:00

Macayla had a grand mal yesterday afternoon and she got a dose of Diastat immediately. It caused her to throw up but she came through fine. We thought she looked a bit "seizure-ish" Tuesday. She was lethargic and seemed to feel bad. But yesterday she was miss perky! She smiled a bunch and even got vocal. She has been falling asleep around four in the afternoon and sleeping until 3 or 4 a.m. lately. So, yesterday it was interesting how upbeat she was and then to have the seizure after she fell asleep around 4 p.m.

She woke up this morning between 2:30 and 3:00 and I got up to be with her as that is the most likely time she would have a repeat seizure. But she only had clusters of small ones. She was miss happy and hyper all day and stayed awake until 7:45 this evening. She may have fallen asleep earlier, but a bad bout of hiccups kept her up. I am hoping this means she will be back on a more normal sleep schedule. We have been spoiled by the past year of her sleeping in a fairly normal pattern.

I had to suction her throat and nose quite a bit today and I am amazed how often she will smile in the midst of those procedures. She is such a beautiful girl!

P.S. Jacob's page has been updated!

I Wish I Could Make It All Better

2009-11-04T04:49:00.002-05:00

Macayla has struggled with a lot of mucus and drainage in her nose and throat for over a week. It seems to be some kind of crude she passed on to me. But she can't process the drainage in her sinuses like most people can so she gags and chokes frequently. It's worse during the night. We suction her and at times get nothing out, even when I run the tube through her nasal cavity. Other times, we get a ton of gunk out and she clears up for a few minutes only to do it all over again. Mucinex and other meds have minimal impact. This is when I wish we had little nano-bots armed with nano-shopvacs that could maneuver their way through the sinus cavity and systematically remove all mucus and gunk. (Sci-fi medicine!)

I know how frustrated I get when I can't seem to get my throat cleared, but for the most part I can usually clear it. Macayla does not have the capability to clear her throat. Occasionally, she gets a good swallow in, but that is not always effective. We spray saline into her passages to try and loosen everything up and then suction, but it is an ongoing process. I know she must get frustrated by it, but she is such a good patient. She still smiles in the midst of all this. I just wish I could make it all better.

The Ever Growing, Throwing Up Girl

2009-10-20T08:13:00.002-04:00

We took Macayla to a nutrition visit yesterday. For the past few days, Macayla has had increased reflux and hiccups. Saturday, there even seemed to be an extra number of noticeable seizures and I wondered if that was making her reflux more. Sometimes seizures can cause the muscles in her torso to spasm and push up on her stomach. Yesterday before we left, she kept acting like she may have reflux and started to gag. I would suction her, but nothing would come out. It was as if she was gagging on something imaginary. On the way to the nutritionist, Macayla threw up in the van. She did not have a seizure as far as we can tell.

We continued on to the visit and even made it on time! She weighs 82 lbs and is 57 inches long! She has not stopped growing. Fortunately, her height has grown faster than her weight so her BMI is good and headed in the right direction. But my back wouldn't mind if we were dealing with smaller numbers all around! Now we hope and pray the reflux quits.

Surprised by Surpsise

2009-10-19T05:27:00.002-04:00

Jacob and Macayla seem to grow so fast. Jacob has had a lot going on this year and the year is almost over. It was a blur. In fact, you can see a video of him on the other blog Smoak Lens or on Youtube. Plus, his page should be updated soon, so keep a check. The kids have outgrown so many clothes and Jacob's interest and thinking are changing. But why is it we get so surprised by the passage of time?

If we see a child we have not seen for some time, we may say, "I can't believe how much she has grown!" Even financial advisor, Dave Ramsey, says to always keep an emergency fund available for emergencies, but the kids outgrowing their clothes does not constitute and emergency! Kids grow. It is predictable therefore budget for it! We are surprised by the passage of time and I find that surprising when I think about it. Time passes, things change and we often find ourselves taken off guard by it in spite of the fact we know it will happen. We get so wrapped up in the menial tasks of daily life, that when we actually pause and take inventory of where and when we are, it is a surprise. This has such a profound impact on us as humans that it is the inspiration of multiple songs.

Maybe it is because we were created for eternity which is most like the Present and not the past. Paul the apostle wrote, "So then let no one boast in men. For all things belong to you...life or death or things present or things to come; all things belong to you; and you belong to Christ; and Christ belongs to God." 1 Corinthians 3:21-23 It is notable in Paul's list that "things past" is missing. If we belong to Christ, our past does not define us but Christ does. We cannot change our past failures and successes. We can only turn those over to the cross of Christ and let Him utilize them in the best way. In Him, we can be focused on today and the future to make the most of it. Certainly, we can learn from the past, but the best way to do so is through the lens of Christ. He can take our past and utilize it to shape our day and our tomorrow and our eternity infinitely better than we can.

In the meantime, we may still be taken off guard by the passage of time. I can't believe October is almost over! This is a symptom of living in the fabric of space/time I guess. But that passage of time will be without regret if we belong to Christ through it all. We can know today in Christ prepares us for an eternity with Christ, so we must make the most of today. We do not want to be surprised in the future by the fact that what mattered most in the past was if our present day was lived for Christ. In other words, today is tomorrow's past. If we live today for Christ, then tomorrow already has a better foundation. Then the biggest surprise of all will be the view from eternity when we see how Christ plugged our story into His bigger plan of redemptive history.

I Touched the Pacific!

2009-10-02T09:52:00.008-04:00

For the past two weeks, I have been in Los Angeles doing some work for some friends on their home. They graciously flew me out here and it was an opportunity to see them, my sister and cousin and see LA. Unfortunately, being out here means I missed seeing Jacob lose his first tooth. Jennifer sent me a picture of it on my phone. Macayla had one grand mal while I was gone and Jacob got the flu. Either I timed this trip really bad or really well!! Jennifer had a lot of help from the grandparents and our nurse while I've been gone.

This was my first time in California. LA has some amazing food and interesting people in it. Venice Beach is a sight! Imagine a carnival on steroids and drugs at the same time and you have some idea what it is like. I did get to put my foot in the Pacific ocean for the first time in my life, which may not sound like a big deal, but not many people have seen both the Atlantic and Pacific. It was really cold! My sister took me to the Getty Center, an art museum, and we saw some amazing pieces. She took me with her to a film set and it was stranger than fiction! I couldn't have made up the characters I met there.

I'm almost done with my trip to LA and I head home this weekend. I have had some interesting and even surreal experiences here. LA seems to have a ton of people living close together and at light speed with little regard for what is around them. It is very different from the laid back pace of the South. To be a Christian here is out of the norm. In spite of these differences, I have spent some wonderful time because of some good friends and family. I miss Jennifer and the kids massively and can't wait to see them.

Comedic Seriousness

2009-09-17T08:22:00.002-04:00

Jacob is interested in joining the Cub Scouts. He's pretty excited about it and there's a meeting for it tonight. We left the house for school this morning and as usual Jacob brought along a couple of toys for the ride. But I begin a serious explanation about how the Cub Scouts is a commitment on all our parts and not just a one-time deal. It's ongoing and we have to commit to going to the meetings. Further, we have to know how much it costs, etc. etc. Jacob listened. He asked if he could stay in it until he grows up. So, I figured he wants to commit. But I told him I wasn't sure if we could financially do it yet and his mother and I would let him know. At the end of my serious commitment and responsibility speech, Jacob says, "O.k. Dad. If you will excuse me, I'm going to play with my toys now."

Check out Jacob's page for more of his drollery.

Better Than Dad!

2009-09-16T09:54:00.002-04:00

This morning, Macayla woke up with a lot of congestion and mucus which made it difficult for her to breathe. I could tell it was in her nasal passages and down her throat. Most of us process our mucus constantly to where it doesn't build up and if it does, we can expectorate it or swallow. Macayla can do neither. I had to suction her a bunch and we use a flexible tube catheter to suction her with. It helps us to go further down her throat and down her nose with less damage to the linings of her throat and nose. It took a while this morning to clear her out and get her comfortable.

Then I noticed she had a lot of gunk built up around her feeding tube and began to clean it off. In doing so, I noticed fresh granulation tissue around her tube for the millionth time. It was bloody and tender. So, this morning, Macayla woke up to tubes down her throat and her tummy bleeding and hurting. But she still smiled.

It never ceases to amaze me how she can smile after we do that kind of stuff to her or after having to struggle to breathe through mucus. I am not that good of a patient. I get a headache and I'm in a bad mood. If I had to put up with what she does, I don't know if I would ever smile again. But she does. She still smiles when I talk to her. She still smiles when the suctioning is over and sometimes even during the suctioning. My wife is a nurse and has to put up with a lot of patients, but I'm one of her worst while Macayla is one of her best. There are times I am feeling bad and do my best not to tell Jennifer just for the sake of our marriage! I know I am not going to respond well to nursing care. God help me if I get old! I pray He will give me the same strength and attitude He has given Macayla!

Spiritual Foot Fungus

2009-09-13T13:10:00.003-04:00

I was working on an article that related to Ephesians 6 and the armor of God. Among Christians this is a familiar passage of encouragement. It reminds us that our fight is not against "flesh and blood" but the "forces of darkness." We are not to fight people but corrupt worldviews. But one of the "pieces" of armor Paul listed has really struck me. He wrote we need to "shod" our feet with "the gospel of peace." Paul is speaking of implements of war and puts the "gospel of peace" among them. What a contrast.

How can the gospel of peace help us in a fight? In light of the fact we are fighting worldviews and not other people, it is an essential piece. All too often, Christians can come across as belligerent and self-righteous. The people who are caught in the clutches of corrupt worldviews can miss Christ because of our poor reflection of Him. Paul may have had the passage from Isaiah 52:7 in mind as he wrote this. "How lovely on the mountains are the feet of him who brings good news, who announces peace and brings good news of happiness, who announces salvation." In our battle, we need to bring the good news of peace and salvation that comes from Christ to those who struggle with sin just as we do. We can only do this if we remember our fight is not with people, but the dark forces of this world. I think this is why Jesus told us to pray for people who are our enemies. If someone is caught in the mentality of a corrupt worldview, they need prayer. All of us are influenced by these dark powers and only through Christ can we find freedom and victory.

This piece of armor has made me take pause and check my "self-righteousness" levels. Literally speaking, I have some ugly feet. Just ask my wife, or maybe, don't. There is little hope my physical feet will ever be beautiful or lovely, but they do not have to be spiritually ugly as well. Self-righteousness and belligerence is the foot fungus of spiritual feet and the gospel of peace is the cure.

No Broken Records

2009-09-01T18:38:00.002-04:00

Macayla made it through the whole weekend with only two big seizures we know of. She was very fidgety all weekend and had short seizures that contained a few of the components we see in her big ones. Her chin tremors continued off and on and her eyes had a lot of nystagmus during these short seizures. So, she may have had more than two but they were brief.

She slept in today and has been quite happy this afternoon. So, maybe we will be free of seizures for another month or so. Last month she had eleven big ones before it was over, so we are thankful she did not break that record.

Little Cousins

2009-08-28T08:56:00.005-04:00

Last weekend, we celebrated Jennifer's grandfather's eightieth birthday. Many family members gathered. We had the opportunity for Macayla to snuggle with her newest cousin, Sophia. We took a picture and I compared it to one we took a few years ago when Macayla was holding Sophia's sister. It's amazing the difference. Sophia also reminds us of how Macayla looked when she was an infant. So, this weekend Macayla was holding a mini-Mac! She did great sitting in the lap of Jennifer's cousin and aunt. Macayla stayed relaxed and didn't fall asleep until we got in the van to come home.

Unfortunately, this weekend is starting off with seizures. We've had two so far in spite of having Versed on board. So now she's about to get some Diastat. She's been having more and more seizure-ish days over the last two weeks but never had any full blown grand-mals. It's been a little over a month since her last ones. She had eleven that time. I hope she doesn't try to break any records this time.

Preparing the Way

2009-08-27T05:41:00.003-04:00

Some friends and I are studying the Gospel of Mark and at present we are looking at John the Baptist. John lived out by the Jordan River and called people to repent of their sins and be ceremonially washed in the river by baptism. He dressed like Elijah and ate locusts and wild honey. I asked Jacob if he would like that and for some reason he said no. I told him that if McDonald's existed back then, you could go through the walk-thru and order a pack of locust and request the "wild honey" dipping sauce. Not even Ronald McDonald could sell Jacob on that idea!

John's mission was to prepare the way for the Lord. The Gospels quote Isaiah 40:3 as John being the "voice crying out to make the way for the Lord in the wilderness" and to "make His path straight." I found in a commentary where Isaiah's metaphor is that of ancient roads. The roads were not the asphalt wonders of our day but trails that stayed in disrepair. Servants would go before a king and clear the path of debris and prepare the way for the coming dignitary. John did this for Jesus as he called people to repentance. The path he prepared was the paths of people's hearts. It made me realize that we who believe in Christ are called to do the same thing. Like John we simply share the truth and those who heed it have hearts prepared for Christ to enter. It is He that changes the heart, not us. Like John, we simply have to share and leave the change up to the King. Being like John thankfully does not mean we have to wear camel-hair garments or eat Mclocusts with wild honey dipping sauce. We just go along the path and share. In the process, our own heart gets cleared a little more and we see more clearly the "Lamb of God who takes away the sins of the world."

The path is not always the path we planned on. John spent his whole life as an aesthetic, like a monk rejecting the pleasures of this world (thus, the locust diet) to play his historical role in redemptive history. There were times he questioned this, especially after he was arrested. Surely he wished his life could have been different at times. We didn't plan on the path we are on either. I would much rather we not be going through Battens and there are days I question God, even in anger. But it is the path we are on. It is not one I can change. John could have chose something else, but didn't. Maybe that is why God does not intervene sometimes and change our situation as we may lack the resolve of John to stay on track. Maybe God does not change the circumstances so that we will be on the very path we need to be on to prepare our hearts and the hearts of others. Each of us, even Macayla, plays a part in redemptive history. She has certainly prepared the path of my heart. I have faith that when it is all said and done, we will look back across an amazing picture only God could paint. The unkept wilderness path will be a highway of gold.

Feeding Tubes Are A Gross Blessing

2009-08-27T05:27:00.003-04:00

Macayla has had a good week, although her feeding tube has given her some fits. It has been bleeding like crazy because of granulation. We cauterized it with silver nitrate. (These are sticks, which look like long matches and have a chemically reactive tip. The tip "burns" the extra tissue that forms around the tube so it can fall away.) Don't worry, we give her pain meds and apply lidocaine to the area first. But even with those on board, she still hurt. After we treated it, she kept bleeding off and on until last night. It also is time to change out the tube. I hope to change it this morning before she eats and see if the actual track is clear or not. This is the problem. I don't know if I can do this without puking! Changing it is not the problem, but looking down into the open track and applying silver nitrate is. Ugggggh!

I thank God for her feeding tube as it obviously keeps her alive, but it can still give me the willies!

Guessing Game

2009-08-15T07:26:00.003-04:00

Macayla has been good most of the week. She had what I would call some "neurological activity" one morning, but not sure what it was. She was very agitated when I went into her room at 6 a.m. and she had been squirming a lot during the night. She fell asleep around 7 and stayed out until mid-day. I don't know if she had seizures during the night or what, but she seemed to settle down over the next 24 hours. She seems to do this kind of stuff for a couple of weeks prior to her "storm" of big seizures. So, we have no way of knowing exactly when they will hit.

She can be such a happy girl that we often have little warning. She smiles and coos and we've even gotten a few laughs out of her over the past month. She is so beautiful. She can certainly brighten up the day. I just wish I knew what she was thinking or perceiving sometimes. Macayla seems to pick out certain sounds that make her smile. We were in a store yesterday and she smiled every time she heard the rattle of passing shopping carts. She often looks asleep at night and will not react when you walk in the room, but will smile when we push the button on her DVD player to stop the movie. There are so many things we wish we knew about her. But the one thing we know she is a gift from God.

Beach Wheelchair

2009-08-05T16:37:00.003-04:00

I promised to put pics up of the wheelchair I made for Macayla this summer. You can check them all out on the Uncommon Needs blog.

Sleepy

2009-07-31T12:52:00.002-04:00

Macayla has been a sleepy girl this week. She has been asleep more than awake everyday. I guess the beach, seizures and the laughing wore her out. Her heart rate was elevated today even when she was sleeping. I'm not sure if she's just excited on the inside and is having a hard time showing it on the outside. She's in a good mood and when I get a response to her, she smiles. Maybe she will perk up this weekend as Jennifer and I celebrate 11 years of marriage. Hard to believe she ever put up with me long enough to want to get married! But she's stuck with me now!

Jacob is grossed out by us talking about being in love, so we must be doing something right.

Hilton Head 2009

2009-07-26T07:51:00.003-04:00

We had a last-minute opportunity to go to Hilton Head Island this past week. My extended family goes there every summer for a family reunion. We have not been able to go every year but it worked out this year. We had a great week overall. Jacob got to play with his cousins, ride waves, and build sand castles. He rode his bike a lot. Macayla got in the ocean with Jennifer and me. She sat on the beach in a special chair I made for her. Pictures of the chair will follow soon. We had big meals. Fishing. Crabbing. The works.

Unfortunately, Macayla started having seizures on Thursday afternoon. She had her first one on the beach and ended up having eleven big seizures total. She did a lot crying out during the seizures, sometimes called an "epileptic cry." She had them all day on Friday, every two hours and two more during the night. She had another on Saturday morning when it was time to leave. Thankfully, the ride home was seizure free. We had a lot of suctioning to do during the ride, but no seizures. As of this morning, she still is exhibiting many of the precursors to seizures, but she has yet to have any. We are not sure if she is done. But we have never had eleven in a row. The beginning of June started with six, but usually she may have three or four tops. She stopped breathing on each one. Her oxygen saturation did not drop as low as usual, but it stayed down longer. That may not be significant, but it was different. She would not respond to diastat or versed. These are the two medications we keep meant to stop seizures. So, we really did it all this past week. In spite of the seizures, we had fun. Macayla enjoyed the pool and even laughed out loud multiple times while she was in the water.

This is one of the few vacation spots where I wish we could live year round. Maybe a church on Hilton Head could call me to be their pastor. We wouldn't complain about that at all, especially if they provide a parsonage!

Prayers

2009-07-20T09:49:00.003-04:00

We have encouraged Jacob to say impromptu prayers at night and at the table. The idea is that he will not simply say "Now I lay me down to sleep..." every night without thinking about it. We can become parrots simply repeating a set of words and that is not praying. Jacob has gotten better at praying extemporaneously at night before bed. Saturday night he thanked God for our family and all that we have. He thanked Him for the fun we have had. He asked God to help him with a few things going on in his life and then he paused. For quite a while. Then he said, "God, I'm sorry for the bad things I did when I used to go to my old school (by this he means pre-school) and I'm sorry for the bad things I will do someday." Jacob has become aware that doing wrong impacts his relationship with God first and foremost. So, he has been praying about that more and more lately.

I was in a conversation recently where the person asked how to pray. I said I treat prayer as a conversation, but certainly not with the attitude that I am God's equal. There seems to be such pressure to sound official or poetic when we pray. Maybe that is why canned prayers, which we can simply recite without thought, are more comfortable. But those cease to be prayers at some point, probably once the thoughtfulness ceases. When we talk to each other, we do not speak in poetic cadences or with well rehearsed speeches. We simply talk and let the conversation go where it needs to. Praying is like that with God and His Spirit guides our thoughts and words as we speak to Him. We are not informing Him of anything, but we are being informed. Prayer changes us not God. I have been moved how Jacob's prayers have evolved and how he has changed as a result. It changes me to watch him pray. What a mysterious and amazing thing, this prayer business!

Yosemite Sam and the Pulse Ox

2009-07-15T02:54:00.003-04:00

It's 3 a.m. and Macayla is hooked up to the pulse oximeter. It's supposed to alarm if her heart rate or oxygen levels get outside set limits. In her case, seizures make her stop breathing and her oxygen saturation can drop as low as 40%. We set the monitor to alarm as soon as it reaches 80%. This lets us know a seizure is occurring. The alarm is four rapid beeps, which repeat every ten or fifteen seconds. Of course, there is the problem of false alarms.

I purposefully waited until after midnight to hook her up since that seems to be the time she has had her last two seizures, if that is what they were. I set the machine up. It was running fine. I got back in bed. Two minutes later the machine alarms, but only two of the four beeps. That is half of the normal alarm. This means false alarm. Silence for a few minutes. The alarm again. Again it is partial. So I go to check the machine and see if Macayla has moved her hand and knocked the probe out of alignment. She has not moved. The machine is reading perfectly. I stand there and stand there. Nothing. No alarms.

This is typical. When we are in the room, no false alarms. As soon as you step out of the room, random alarms. The readings are perfect when you come and check and there is no "recent data" button to see what happened. But turn your back and the pulse ox goes crazy. I think it waits for you to get into another part of the house and then it calls you back! It forces you to sit next to it in the pre-dawn hours. As long as you are watching it, it is silent. As soon as you turn your back, BEEP! BEEP! BEEP! BEEP! The alarm sounds and I go into a Yosemite Sam tirade of expletives, "Frickin', stinkin', frackin', flippin', blippin'..." This machine is notorious for doing this! It has not alarmed once while I sat here, 20 inches away, and typed. But just wait. As soon as I try and go back to bed, BEEP! BEEP! BEEP! BEEP! If I were Yosemite Sam, I'd use my six-shooters!

That's New

2009-07-14T18:54:00.002-04:00

Macayla had a great Monday and seemed to be over her seizure(s) from Sunday morning. We put her on the pulse oximeter Sunday night but since she seemed back to herself on Monday, we did not put her on it Monday night. That was a mistake as it seems she had another big seizure in the night during her sleep. It had to have been between 11:30 p.m. and 5 a.m. She was post-ictal this morning as she would not wake up and she would not wet her diaper. She was sleeping on her side and obviously had something in her mouth. When I suctioned her, I pulled out formula which means she refluxed or vomited. She had to be cathed later in the morning and was lethargic the rest of the day. She is smiling now, but still tired. To our knowledge, these have been the first big seizures she has had in her sleep. It is also unusual to skip a day between big seizures. It will be a long night as we will put the pulse ox on her again. Unfortunately, it gives a lot of false alarms, but we need to know if she is really having these seizures or not.

Busy Sunday

2009-07-12T20:16:00.002-04:00

Macayla has been acting very "seizure-ish" all week as we call it. She has little precursors that tend to pop up before big seizures come. But she made it all week without any. As far as we know, she has never had any grand mals during the night when she is sleeping. But this morning changed that. She would not wake up this morning before church. She also had not wet her diaper (another symptom during seizures). Jennifer had to use a catheter and when she rolled her over, Macayla started vomiting.

Apparently, she had a seizure in her sleep, and had vomited some. Amazingly, it was still in her mouth and she was still able to breathe. When Jennifer rolled her on to her back, she choked and had to be suctioned. Jennifer had to deal with all of this on her own as I was already at church preparing for a sermon.

Macayla has not had any seizures since. Fortunately, we have a pulse oximeter that can alert us if there are any more. She was able to attend Jacob's baptism today as well. Jacob did great and it was very meaningful for me to participate in his baptism. There will be more about it on Jacob's page soon.

I Don't Think I Can Do This!

2009-07-09T22:35:00.003-04:00

Jacob will be baptized this Sunday. He and I talked about it and I told him what to expect and he was very interested in how he will go under the water. So, we have spoken about it several times over the past couple of weeks. I will also be preaching this weekend and I have been preparing my sermon. Jacob walked into the den today where I was pacing and reading my sermon.

Jacob asked what I was doing and I explained that I was preaching this Sunday. He asked, "You mean this Sunday? When I get baptized?" I told him yes. He asked, "Are you going to talk about baptism?" I told him yes, that in fact I was. Because of what he and I had talked about before he asked, "So, while we are standing in the water you will say all of this stuff?"

I responded, "Yes. I will dip you into the water and while you are under I'll preach my sermon. It should only be about 30 minutes."

Jacob pondered that for about a second, then his eyes grew wide, "While I'm under the water?! I don't think I can do this!"

I reassured him I'll do all my yapping before we get into the water.

Big Brother

2009-07-02T11:52:00.003-04:00

Last night, I was cutting Jacob's fingernails. Unfortunately, I cut one in a bit too far and it did not feel good. No blood, just uncomfortable. Later, he and I got in the bed with Macayla and we all watched a movie together. Macayla was having trouble falling asleep. Afterward, Jacob stayed in the bed with Macayla while I got her meds together. I noticed she needed her fingernails cut so I told Jacob I would go get the clippers. I left the room, but from down the hall I could hear Jacob talking to Macayla. He said, "Dad is going to cut your fingernails. He cut mine and one of them he cut too far. It hurt a little bit. But don't worry, Macayla, I don't think he will do that to your fingers."

As I walked back into the room, Macayla was smiling as Jacob was laying next to her and holding her hand. She liked hearing him and feeling him near her. He talked to her and joked with her but after a while he grew still and quiet and so did she.