Father of the Bride

I recently listened to Jenny describe to someone how precious it was that her father was still alive to dance with her at our wedding. As she described that, I realized anew that I would not have that dance with Macayla. I would never give her away to a husband. I would never give her and her husband a toast at their wedding. I would never see her bring children into the world. I would never be a granddad to her children. There are no guarantees for anything, but I felt that loss and grieved. Macayla will not be there for her wedding. But Jesus reminded me of the wonderful imagery and metaphor in Scripture of Him as the bridegroom and we who are believers all together make up the bride. He reminded me of the fact that when we are his, we are united in a covenant relationship forever. As I thought about all of the imagery of the great wedding feast that is to come as we, the bride, are joined to Christ the bridegroom forever, I realized that Macayla will play a part in that marriage soon. Barring any miracles, she will soon walk down the eternal isle to meet the groom, Christ. I will be able to give her away to the best groom that ever existed. Then one day, when I see her again at the great wedding feast that is heaven, I will have that dance. In the meantime, she and I will practice our steps because the here and now is where we prepare for the eternal.

Smiles

It looks like we will be having a MRI soon and possibly an EEG. The protocol for Macayla’s experimental medication calls for MRI’s every 6 months. I had mentioned that Macayla had started doing some strange contorting in her chair where she would wrench her body and head to the right and stay there for a few seconds. I emailed a video of these episodes to our neurologist and he thought it might be a focal seizure (partial seizure – meaning it occurs in only one hemisphere of the brain). The other possibility may be reflux. We are waiting to hear if we will do an EEG to rule out or confirm focal seizures. Macayla is sleeping much better for now. Sometimes as much as 12 hours at night and more naps than before. But she still keeps us on our toes each day as she changes quite a bit from one day to the next. The one great thing she does still and does well is smile. She still wants to pull herself up on us when we are on the floor with her and she gives hugs. Even on the worst days, that smile can change the whole house.

Silly God and Talking Donkeys

Jacob was having one of those nights. He was showing out and pushing the limits of obedience until he crossed the line and got into trouble. It was near bedtime and he was still sulking from his “run-in with the law” as he went to bed. He was mad at me for disciplining him. I told him he shouldn’t go to bed angry. I told him that I hoped he could go to bed with a smile and that God wants him to smile too. Not only that, I told him that God would like for us to laugh and have fun too. Jacob responded, “No, God isn’t silly and He doesn’t laugh.” I reassured Jacob that God had a sense of humor and likes it when we laugh. But he insisted, “No, God isn’t silly, he just wants us to follow rules.” My heart broke. My heart broke because somewhere I had failed to show Jacob that God is relational and personal. Already, Jacob is being indoctrinated into the mindset that God is purely a rule maker. Yes, I remember now, 1 John 4:16 says, “God is rules.” I apparently have not been able to balance his view of God with the idea that “God is love.” (what 1 John actually says) I remember growing up with the idea that God is all about rules. Follow the rules and God love’s you. Disobey the rules and God shows His wrath. I believe that a proper understanding of the Torah is that God gave the Law out of love to protect His people in a fallen world from themselves and outside influences. He wasn’t trying to stifle our fun. He gave the Law to transform people and He fulfilled that Law when God became a man in Christ Jesus and died as our atonement. He came to us. He crossed the gap between Himself and mankind to save us. The God of rules wouldn’t do that, but a God who is love would. Thankfully, God brought to mind a piece of Scripture. I told Jacob of the time when God was trying to talk to a man named Balaam who wouldn’t listen. So God made Balaam’s donkey speak to get the man’s attention. That sounded funny to Jacob and made him laugh. I try to remember for myself and pass it on to Jacob that God doesn’t love us because we follow rules. God loves us because He made us. God gave rules to protect us and to show us our need of Him. God wants to make ME righteous, not just make my ACTIONS righteous. If I’m transformed by His grace, then the “rules” begin to fall into place. Jacob, as well as the rest of us, needs to know the rules. We need boundaries, but we need to know why the boundaries are there. The rules have no value if they never point us to our need for Christ. My prayer is that Jacob learns about transformation. My prayer is that Jacob learns that he is loved because he is and not because he’s earned it. I think we’re off to a good start. Jacob went to bed with a smile as he thought about talking donkeys.

Attachments

I was in the grocery store not too long ago and like most stores, there is constant background music playing because we Americans can’t stand silence. Anyway, I heard a song by Jack Johnson begin as I turned down the bread isle. It was from the Curious George soundtrack and I had used that song in one of our home videos of the kids. As the song played, images of Macayla in the home video I had made came flowing with that song. I find it amazing how powerfully a song can so vividly attach a person or time in our lives to our memories. For me it is as powerful attachment as the sense of smell can produce. Smells of a grandparent’s home can bring back a flood of memories from childhood. For me, I am finding that every song I use in a home video becomes another sinew attaching Macayla to my memories. When I hear these songs now on the radio or at the grocery store, I can see vivid images of Macayla and Jacob playing in the carport or watching a show at Disney. This is good and bad. There are times when I welcome these images and the sweet memories they bring. But there are times when I grieve more because of these images. It’s hard to predict the emotional response to them. But in the end, I’m glad now and I’m sure I will be in the future to have these unexpected moments of memories when one of these songs will play on the radio, in a grocery store, or elevator. It was sweet and uplifting the day I heard Jack Johnson on the bread isle. So much so, that I was angered as that moment of joy was interrupted by a call over the speakers for a price check that drowned the music out for a few seconds. But the joy returned as the price-check ended and the speakers once again poured forth music that is so richly attached to memories of Macayla.

Holiday Changes

Anytime Macayla changes, it is unclear if it is a permanent change or temporary. Sometimes she loses some ability only to gain it back later, or she may never recover it. Macayla has essentially stopped talking. She will make some sounds that could be versions of words, but the vocab has disappeared. She stopped interacting with objects and toys over the holidays. She started rocking back and forth in her wheelchair. She has also started some strange contorting in her chair where she turns her head and trunk as far as she can to the right. It is always to the right. We are not sure if this is seizure related or not. It became more difficult to interact personally with Macayla as well. She may get back into the groove but it is hard to know.
She has stopped eating by mouth completely. We think this is probably a permanent change now. So, she gets all of her nourishment through the tube.
Today, I was able to get her excited about pouring water from one cup to another. This has always been one of her favorite things to do. She loves the sound of it and watching the water cascade from one cup to the other. She started smiling and grabbing the cups and she started interacting with us pretty well. I did notice that she seemed to have difficulty focusing on the cups. If her eyesight is giving her trouble, then this may account for her lack of interest in playing with objects. But that is IF her eyes are giving her trouble. The last eye check was good. The brain is such a mystery. It is always hard to know with Macayla if it is the disease, the medications, or if it's just a five-year-old thing that makes her change.

Add Sausage to Half

The other night, we came in from our holliday trip and had so much to unload and put up that we decided to order pizza instead of cooking dinner. I ordered a pepperoni and mushroom pizza and asked if they could add sausage to half of that. The person repeated, "medium pepperoni and mushroom, add sausage to half. Uh, which half would you like that on?"
"Excuse, me?" I asked. I couldn't believe she really asked the question and instead of catching how ridiculous the question was, she asked again, "Which half would you like that on?"
Common sense is not so common.

The "Wonder" of this "Wonderful Life"

The Christmas season always brings multiple broadcasts of the movie It’s a Wonderful Life with Jimmy Stewart. I remember one year it seemed to be the only movie TV stations had access to since it played nearly around the clock between all of the different stations. This season hasn’t been that bad, but instead of watching Jimmy Stewart playing ole George Bailey in that old Christmas movie, I read a book. Recapture the Wonder by Ravi Zacharias. It is a great book from a great writer and speaker. Ravi makes the statement, “The world of a child may delight in the fantastic, but the world of an adult must move from what is merely fantastic to that which is fantastically true.” Life certainly loses its wonder when we become adults. There are leeches in life that seem to suck the wonder right out of us. There are the leeches of unwanted responsibility, bills, changing the oil, addiction, pain, suffering, loss, death, disease, etc. Things such as this become smothering and can bring about resentment and bitterness into our lives. Recently, I found myself angered by our situation and the strain of taking care of Macayla. This has been a difficult Christmas for us. As of the 27th, it has been one year since our diagnosis. The difference in Macayla from last Christmas to now is tremendous. She can’t walk without full support. She has stopped talking. She seems less and less able to interact with toys, people, or the environment around her. All of this struck me as I watched her rock uncontrollably in her wheelchair. It has been sobering as we are once again reminded of how our daughter is slipping away right in front of us. Is this her last Christmas? Most of the data would certainly say no. But if the rate of decline doesn’t slow, what will Macayla be like next Christmas? It certainly is hard to find wonder in life at such times. But the fantastic truth is that Jesus is with us in spite of the disease and in spite of our anger and frustration. The fantastic truth is that Macayla is still Macayla and lives are being touched by her life and in ways we can’t yet fathom. Wonder has many aspects according to Ravi. Mystery and clarity are just two of those aspects. Children see the world with great clarity at times and most things are mysterious to them. They faithfully accept so much of what they are told and then are mesmerized by it (until puberty begins and then there is no mystery because they know it all). Jacob delights in finding out how a telephone works. I just wish the telephone would stop ringing sometimes. The clarity of Macayla’s situation is that she is deteriorating and unless there is a miracle, she will die in the next few years. The clarity of Macayla’s situation is that God is working in it and through it. The mystery of Macayla’s situation is how God is working in it and through it and how far that will reach. George Bailey discovered with great clarity that his life mattered in a way that was too big and too mysterious to completely fathom. Likewise, what a wonderful life Macayla has with all of its mysterious clarity. And that is fantastically true.