Crossing A Line

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

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

Cast Off and Adoption

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

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.