Runaway Grapes of Irony

We’ve had two nights of Macayla not sleeping. She seems to be having seizure type activity that wakes her out of a hard sleep. We opted to give her Diastat last night to stop it as we did a few weeks ago. Needless to say, we are tired. Jacob, on the other hand has had two of the best nights of sleep in a long while. This morning, I really wanted to make sure Jacob got to school because his class was going to a swim park and then making banana splits. (Actually, I wanted to leave him with Macayla and I wanted to go!) So, I moved a sleeping Macayla from her bed to her wheelchair and loaded them up to go. But Jacob wanted to take the last four grapes he had from breakfast with him. He picked up his bowl and was carrying that with both hands and his bear was tucked under his arm. He was walking down the slope of the driveway while I was loading Macayla on the van lift. I notice a grape roll across the concrete in front of me and it was followed by the whining voice of Jacob. “Dad, I lost my grape!” My impatience was pretty high this morning and that was aggravated by two sleep-deprived nights. I told him to let it go and get in the van. “But Dad I wanted that one!” By this time, I am walking around to the side of the van to strap Macayla in. Jacob is whining and so worried about the runaway grape that he doesn’t notice that he is tilting his bowl. Two more grapes roll out onto the concrete. Jacob and I paused and watched the two grapes roll under the van and out of reach. The whining and crying were about to pour out of Jacob. I could see it coming like a sandstorm rumbling toward me across a desert plain. But my frustration was faster to the draw! I grabbed the last grape in the bowl put it in Jacob’s hand and then jerked the bowl and took it back into the house. Jacob in the meantime ate his grape and pouted in his car seat. I came back out and told Jacob that he better get his act together and show that he was thankful that he was going to get to go swimming and make banana splits. I reminded him of how difficult it was to get him there because I had such a “hard” night with Macayla. But the reality is that I missed a teachable moment and all I really wanted was to have myself acknowledged. I wasn’t concerned about Jacob being thankful for swimming and banana splits. I wanted him to be thankful for me, Super Dad! What a disappointment I can be. Jacob had four grapes and one rolled away. Once it was gone it was gone and there was no way to get it back. He was so worried about the one that got away that he forgot what he still had, three grapes in his bowl. His whining and concern over the one grape cost him two more. I was so concerned about the sleep that I lost and couldn’t get back. I was so concerned about the acknowledgement that I was not getting, that I missed a great teachable moment for my son. He didn’t need a lesson in “be more careful next time.” He certainly didn’t need a lesson in how well I am at pitching the adult version of a fit. He could have used a lesson in that being thankful comes when we recognize the blessings we do have and that loss can be a lesson in itself. He may have profited from the lesson that when one grape rolls away, it’s not fun, but it makes you appreciate grapes more. Here’s the fruity irony of runaway grapes. Jacob has recently learned about the fruit of God’s Spirit: love, joy, peace, patience, gentleness and self-control. I’ve been encouraging Jacob to ask God to help him be more patient and self-controlled during hard times. Jacob did not see any of those fruit in his Dad this morning. Now that he’s at school, I’ll have to wait until this afternoon to apologize to him and ask for his forgiveness. I hate waiting on that, but there’s a lesson in that too.

Melatonin

Macayla has to take melatonin to help her sleep at night. Our doctors suggested this to us. It is a natural substance that we produce in our bodies that essentially helps us slow down to fall asleep. According to our doctors, people with neurological conditions may have trouble producing melatonin properly. So we have to give it to Macayla. However, the normal starting dose form an adult is 3 mg. Macayla takes 12 mg and sometimes 15 mg. The doctors stated that this is where to start with children like Macayla. It has helped to keep her sleep more consistent, but there are no guarantees on some nights. The best thing we have found though for anyone who has a feeding tube is a melatonin capsule made by Life Time (a vitamin and herbal company) and we get it from a local health store. It can be opened and sprinkled in 20 ml of orange juice with 20 ml of water so that it can be pushed through the feeding tube. We have used tablets and crushed them, but they don’t dissolve or mix well at all. This is one of those practical things I thought might be helpful to others with children on melatonin. It’s like doubling diapers for quicker changes on the road.

What's your prognosis?

For the past couple of weeks, Macayla has struggled with her walking. She cannot walk on her own, but we have been able to assist her by holding her up and allowing her to make the walking motion with her legs. We have a gate trainer, but this has had minimal success with her. This is a device that resembles a walker that babies use when they are learning to walk, but it’s made for larger children. With our assistance, she only shuffles at best and for just a few steps. Her therapist got her to walk better on Wednesday by using a slightly different technique. I tried to learn this technique, but have yet to be consistently successful.
All of this to say, Macayla seems to be losing another ability. It is these times that we are reminded of where this is headed. We know what the prognosis is. It will be vegetative and fatal. The word prognosis is from Greek and the “pro” means prior or before and the “gnosis” means knowledge. We have prior knowledge of what will happen. We know what will happen, but that doesn’t prepare me for the grief of watching it happen. That prior knowledge is not a bypass for pain and grief. This is also on top of Macayla’s strange “episodes” that may be seizure activity where she seems to have rigid and repetitive movements accompanied by vocal outbursts and sometimes laughing. Our prior knowledge of symptoms does not compare to the actual experience. I went to a funeral this week for a young teenage boy who died suddenly. I know we will have a funeral for Macayla one day, but as I looked at those parents, I was reminded that there is no preparation for burying your child.I know more abilities will be lost. I know we have new types of seizures to experience. I know we will have feeding tube problems. I know we will have blindness. I know we have a funeral to plan. But I believe in another prognosis. I believe that Christ has her. I received that prognosis before we got our diagnosis. That prior knowledge tells me that Macayla will be with our Lord and she will be whole. She will be kept safe and will experience love and healing in its fullness. But between now and heaven, it means that we will experience Christ in our lives through all of this. A guy named Paul once wrote, “We grieve, but not as those without hope.” Hope is stirred by some sort of evidence. Christ makes himself evident in the midst of our grief through Macayla, Jacob, Jennifer, and so many people around us. Our prognosis tells us that Macayla’s life will and is impacting people around her and at the end of this phase of the journey she will be with Christ for eternity. Because of the fact that I have trusted Christ as my Lord, I have the same prognosis. The good news is that eternity has already started. Here again, the prognosis does not compare to the actual experience. I hope all who read this have the same prognosis as us.

Camp New Hope

Due to the generosity of some great folks up in North Carolina, we were able to stay in a mountain lodge for a week stocked with food and fun. The five bedroom cabin we stayed in was situated on 160 acres along a river in the mountains near West Jefferson. The camp is called Camp New Hope and was started by two brothers who wanted a place to let families with special needs get away without the financial burdens of vacation. The land was gorgeous and they keep the areas around the house and along the river front mowed (a three-day task every week). We were able to take Jacob on the canoe and paddle boat. Macayla was given a ride in an ATV that was essentially a golf cart on steroids. She loved to ride in it. My parents and little brother went with us and it was great to spend some with them away from the hustle and bustle of life. It’s hard to convey how relaxing it is to be there. The cabin donned a front porch enclosed with windows so that we could sit and have the view of the river below and enjoy the afternoon sun and breeze coming through the screens. Our hostess, Randy, went the extra mile to make sure we had anything we needed and even the things we just wanted. She made a special run to the store to get Jacob some pink ice cream and some orange sherbet just because he likes it. She even did some laundry for us!! We got to go up on the top of the mountain and get great video and pictures. We saw a lot of nature and went swimming and fishing. They have commercial coolers like the ones in convenience stores that are stocked full of sodas, water, Gatorade and candy. It was cool enough at night to have a campfire next to the river and roast marshmallows. The lighting bugs in the trees at night put any set of Christmas tree lights to shame. They made the trees seem alive with light. They hovered over the water and reflected their glow and an occasional lighting bug would crawl around in the grass at your feet and make the ground glow beneath you. The only thing that would have made our trip better was if it lasted another week. We’ll have more pictures on the photo album page soon.

Bat Pooh

We had a birthday party for Macayla and Jacob on Saturday, June 2nd. Their birthdays are only a week apart and we decided to have it all together in our backyard. Jacob wanted “superhero” party but he couldn’t decide on which hero. So, we had several. We had Mutant Teenage Ninja Turtle plates and Spiderman cups and Superman napkins and so on. Macayla on the other hand had a Winnie the Pooh party. So we had two tables, one with heroes all over it and the other graced the gang from the hundred acre wood. We had a Winnie the Pooh cookie (the large chocolate chip cookie with Pooh drawn on it with icing) and a pull-apart cupcake cake with Spiderman icing and multiple action figures stuck in the top. The kids played on the swing set and had hotdogs and cake and rejoiced when the candy poured from the piñata. It was fun. But there was one thing missing in my opinion. This was a superhero and Pooh party. Batman is Jacob’s favorite hero and I suggested that we decorate the Winnie the Pooh cookie a little more. I suggested that we use black icing and draw a Batman mask and cape onto Pooh and we could call him “Bat Pooh.” Alas, the chocolate chips may be too reminiscent of guano! If you aren’t sure what guano is, just walk inside a cave infested with bats and see what they deposit on the cave floor! My wife was not keen on my idea. It was vetoed!

"It's like an earring...?"

Fridays are the exciting (scary) days around here. Last Friday we got our first experience with using Diastat on Macayla to stop a long seizure. This Friday, we changed out the valve on Macayla’s feeding tube in her stomach. She has what is called a Genie feeding tube which is basically a button that is flush against her tummy and this button allows you to snap tubing from the feeding pump on to it. Every few months, the valve needs to be replaced. So, we replaced it and that involves pulling the tube out enough to get a clamp on the actual tubing behind the valve. This clamp seals it off while the valve is removed and a new one is put on. The valve change went great, but shortly after, Macayla’s shirt and bed were soaked and smelled like formula. We discovered that the tube had a cut in it. It was pouring out from around the valve when we moved her. At this point, we aren’t sure what to do. We’ve never experienced this before and we were not prepared. I thought that the only way to replace the actual tube that penetrated her tummy was in surgery. So, I am panicked and kicking myself because I was the one that changed the valve and may have damaged the tube with the plastic clamp. She would have to go under anesthesia which is risky. Will she come out of it? Needless to say, I felt terrible and angry. We took her to the surgeon’s office and they looked at it and said, “Yep, we’ll have to do some yankin’!” “What exactly do you mean by that?” I asked. “We just yanked the old one out and thread a new one in,” our nurse said casually. I couldn’t believe that you could just yank it out without pulling her belly open and I really couldn’t believe how casually the nurse said it. But I must remind you that I get the willies if there is a hair wrapped around Macayla’s tube. Yanking it out would make me pass out! Sure enough they just yank it out and the soft, pliable flange inside folds up and comes out. It is painful they say. Macayla didn’t flinch. Well, according to my wife she didn’t. I was outside the room because I wasn’t about to watch. They threaded another one in with a rod and cut it to fit and installed the valve. The nurse told me it is like having your ear pierced. She said that tissue had built around the tube and made a tunnel or hole that stayed open like the hole in a pierced ear. That’s all fine and dandy, but only the pin of an earring goes through the ear, not the diamond stud on the end! Macayla had a flange yanked through her belly. She didn’t flinch and she was back home and eating by 7:30 that night. We weren’t prepared, but the tubes do fail. The valves and the tubes themselves. When they do, it’s a mess and it’s scary. But it was much simpler to fix than we thought. It is painful for most kids. It was described that it felt like having the wind knocked out of you. Macayla can’t express pain properly, so we aren’t sure what she felt. But all is well and we were able learn and prepare for the next time.

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.