Seizure

Around 4 a.m. this morning, Macayla started stirring in the bed. She’s been restless lately between 3 a.m. to 4 a.m. But this morning, she was having what we believe was a long seizure or cluster of seizures. It was different from what we have seen before. Her legs and arms jerked rhythmically and repetitively while she made some strange sounds over and over. The movements themselves weren’t as unusual as the fact that we couldn’t interrupt them. Anytime she gets hyper and jerky, we can usually interrupt it by changing something in her immediate environment. If she’s watching TV, we can turn it off and she will pause and look at it. If it’s dark, we can turn on a light and she will pause and look around. But this morning, she didn’t stop even when we turned on the light. I picked her up and she continued to do it in my arms without acknowledging me. We decided it was probably a seizure when we saw it suddenly stop and she was instantly asleep and then it started again as quickly as it stopped. The second time it stopped, she looked around and even made eye contact with me for a moment before closing her eyes and it started again. Around 4:45 a.m. we gave her diastat which is a rectal medication used to stop seizures. It is basically made to knock her out and stop the seizures. When we were prescribed the medication two years ago, we had to test it on Macayla in the doctor’s office to see how she reacted. That trial put Macayla to sleep in three minutes, but this morning it took 15 minutes. We’ve never had to use it before this morning for seizures. We are increasing some key medications to help control seizures more. In the meantime, Macayla’s digestion processes have been off for about two weeks. She has been spitting up frequently and even threw up on her birthday (not a fun way to celebrate 6 years old). She has had more difficulty staying regular as well. So, all in all, she has kept us guessing and on our toes. But we are so thankful for the blessing that is Macayla. She is beautiful and it’s amazing what she endures and still smiles.

Six

Six years ago at 7:49 a.m. in Greenwood, SC Macayla Grace Smoak was born. She came out at 7lbs 11 oz. and was pink, wrinkled and gooey with a head full of hair. All that hair compelled some of the nurses to ask Jennifer if she had a lot of heartburn during the pregnancy. Apparently there is a connection (wives tale) between a baby with hair and heartburn during the pregnancy. Jennifer did have a lot of heartburn, but it was probably brought on more by Macayla’s father than Macayla’s hair. I got to give Macayla her first bath with the help of my mother-in-law and sister-in-law and it wasn’t long before Macayla took her first nap. Jennifer did well except for her placenta not delivering and that required a quick trip to the O.R. after delivery. I did well until I watched them put a needle in Jennifer’s spine to control pain during delivery. That’s when I hit the floor for a few seconds! But all first-time Dads are allowed a floor nap in the delivery room. Macayla was an amazing adventure when she was born and I was ready to have twenty children. Macayla hasn’t disappointed us in the adventure department! She’s still my little girl and always will be. It’s amazing to take stock of all that has happened in that time. What is about to happen over the next six years? This past week I studied to prepare for a Bible study and in that process, I was reminded that Genesis records God creating the heavens and the earth in six days. God could have created everything in an immeasurable instant, but He chose to take time and bring order out of chaos. Step by step, one piece of the puzzle after the next, God put the universe together and when He was done, He saw what was complete and said it was “very good.” Six years ago, God started a process in our lives. This process will affect us for the rest of our days, but its purposes are found in a greater plan. The plan to redeem the world that fell shortly after it was created. It was no longer “very good.” Macayla is a victim of that fallen world, a world with defective genes and defective souls among other things. But through Christ, we are being re-created. Step by step, one piece of the puzzle after the next, God is re-creating us through a process and not an immeasurable instant (probably because we don’t handle sudden change too well as humans.) God promises that He works all things to good for those who love him and are called according to his purpose. The blessing of Macayla and the curse of Battens Disease will all be worked into that plan. How? I don’t know. But when it is finished, we will be able to see the re-creation and see that it is indeed “very good.”

Interactive

For several weeks now, Macayla has been much more interactive and it has been great to watch. But she is also experiencing more hyper episodes that involve a lot of screaming or laughing. Her body gets quite rigid and she flinches and jumps very suddenly during these episodes. We met a young boy recently that suffers from gelastic seizures which are known to cause emotional outbursts such as laughing or crying. We are trying to catch these moments on video to send to the neurologist for review. We shall see, or I guess, he will see and then tell us if there is anything to it. I wish we could say that Macayla is just having a good time, but it certainly seems that she is distressed when these events happen. It also causes her to spit up more and since her swallowing is disorganized, that can be difficult for her and cause her to choke. So we hope to learn more soon. We are excited over the consistent level of interaction she has maintained. It gives us more glimpses of our little girl. One of the neatest things is when she makes eye contact with me in the rearview mirror (something she hasn't done in almost a year) and begins to giggle. That will brighten your day in a hurry.

Ruts

It’s amazing how ruts work. When I was first learning to drive, we lived along a well traveled dirt road. After a good rain, the road would be rutted from the many cars that traveled it. Once the dirt road would dry out, the ruts would be hard and formed and they would alter how you drove on it. If you’ve ever driven down heavily traveled dirt roads, you know what it’s like to feel your vehicle suddenly shift and drop into ruts made by those who have gone down the road before you. If it is a dirt road you lived on, then chances are you made those ruts. No matter how hard you try to avoid them, eventually you will feel the car jolt over and drop in the ruts and steering becomes a frustrating experience. The ruts act as tracks and this is why there aren’t steering wheels on train engines.
All this to say, I get in ruts. I’m in a rut now. Ruts are those old patterns in life that seem to haunt us and as we go down the dirt road of life that we live on, we fall back into the ruts that we made the last time we traveled that way. I’ve tried turning the steering wheel to make my car jump out, but it is no use. I recently thought of the title of a song “Jesus Take the Wheel” and that’s exactly what I want Him to do. So, I slid over to the passenger seat and offered the driver’s seat to Jesus, but He slid me back over behind the wheel! He told me that if this metaphor put Him at the wheel, then I would be free of having to make choices since He would be making them all for me. That would not do. I am left to make choices and do my part. He said that He would go up ahead at the appropriate spot in the road and get his road crew started. It’s a family-owned road crew as it turns out. A Father and Son and Spirit team and the Father has many adopted children that He employs as well. They would get some of the ruts out up ahead, but for now His grace was sufficient. I honestly don’t like that answer. That means that I have to continue through the discomfort my situation for now. A man named Paul had some affliction that he prayed to God three times to remove and God gave him the same answer, “My grace is sufficient.” This same Paul also wrote that he did not “consider that the sufferings of this present time are worthy to be compared with the glory that is to be revealed in us.” Paul stated that God works all things out for the good of those who love Him, those who are called according to His purpose. Those He called are justified and those who are justified are glorified. So, there’s something to look forward to, I guess. But this is going to require some perseverance. Where does that come from? Oh, yeah the grace. It comes from God’s gift of grace that has saved me through faith. It is that grace that has re-created me in Christ for the good works that God prepared beforehand so that I might walk in them. I guess in keeping with the metaphor… “so that I might steer in them.” As it turns out, sometimes we have to follow the ruts until a better spot in the road comes up. If you don’t keep the car moving, it can get bogged down and stuck up to its axles. God has prepared the good works ahead and He’s using the ruts now to get me there. Maybe staying in the ruts is preventing me from sliding off into the ditch not to mention there may be a few good works to do while in the ruts. Whatever the reasons, I pray that I can rely on that grace and pray without doubt for God’s wisdom as I navigate the frustrating ruts of this life. It’s amazing how much you can learn about life from dirt roads. Don’t even get me started on the dusty days or the ripples that form and rattle your fenders off! Guess you have to drive it to understand.