Just A Few Pictures

Week of Parables

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

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

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!