Go!

Last Sunday Macayla had three grand mal seizures. She has never had grand mals before and it took a while for us to figure out what was going on. However, she stopped breathing during the seizures, the longest of which lasted about 45 seconds. She bypassed turning blue and turned gray. She turned gray and her eyes glazed and she looked like she was slipping away. I tried suctioning her to get her to breathe, but nothing seemed to work. It was a helpless feeling. It was a moment when you realize you are watching your child die and there is nothing you can do to stop it. Fortunately, Jennifer got home in time for the third attack and she recognized it as a seizure so we gave Macayla Diastat and it stopped them. Macayla's immobility made it hard to recognize it as a seizure and the first indication I had of a problem was when Macayla threw up. I thought she stopped breathing because she was choking on vomit, but it was the seizure that stopped her breathing. After getting the Diastat (a rectal valium medication) she slept for 13 hours without another problem.

The whole event shook me up. We were scheduled to leave the next day on vacation at Camp New Hope, but I truly wanted to stay at home. The thought of traveling 4 1/2 hours to a remote location seemed overwhelming. But Jennifer's wisdom, faith and strength has a way of straightening me out at times. She observed that we did all the intervention we could have done and it would not matter if we were at home or in the mountains if it happened again. She reminded me that Macayla would miss out on a great trip that week if we did not go. More importantly, we had decided the day we got the diagnosis of Battens that we could either curl up and die or we could live and we chose to live. Macayla's life is not the way we pictured it, but it is the life she has and we must live it. We are so glad we went to Camp New Hope this week. Macayla had a great time. She lit up as soon as we put her on the Bobcat (an open air mini-truck that has four-wheel drive; picture a golf cart on steroids). She loved the vibration and the wind in her face and the bumps as we road around the mountain. She got to go skinny dipping in the river one day and squealed with delight. The next day we put her in the river with clothes on and she loved it and laughed. Laughter was the word of the week. Macayla got so tickled on Thursday when she sat on the floor with a couple of dogs that happened to be there. Muggsy was a little Pug that licked Macayla on the face and Macayla started laughing uncontrollably. She got so tickled that everything we did for the next three hours brought laughter. She wore herself out laughing and playing in the water and almost dosed off riding in the Bobcat afterward. Jennifer and I remembered this week that the last word Macayla ever spoke was, "Go!" She used it in therapy to indicate she was ready to go down a slide or start an activity. Even when she could no longer make the "o" sound

she would just make the rough "g" sound to mean "Go!" After she lost that ability, she would hit a switch that activated a voice recording of the word "Go!" Jennifer observed how appropriate it was that Macayla's last word was "Go!" That is a great reminder that we must keep going. We cannot curl up and hide. We cannot stop living life just because it turned out shorter than we expected. Whatever life any of us have must be lived. If we had stayed home this week, we would have missed out on some of the most precious moments of life we have had with Macayla. It is scary at times when Macayla's condition progresses to a place we've never been before. It can feel overwhelming to get everything together and travel. We cannot control the disease. We cannot control all of our circumstances. But we can decide how we will respond to those circumstances. Macayla has reminded me that life is experienced when we get up and "Go!" 

Rapturous Joy

Macayla and Jacob had a great birthday party. Hotdogs, cake, chips, beans, candy topped the health menu. There was some fruit which hit the spot on a hot day. Macayla stayed awake the whole time and even laughed some. Last year she slept through her birthday party.

Lately, Macayla has been laughing and smiling a lot. Yesterday she was so tickled for some unknown reason that she couldn't stop laughing. She started laughing so hard she couldn't breath and tears formed. Whatever it was that made her laugh, I'm glad she had it. Her laughter is contagious and when it starts, it gets everyone else laughing too. That rapturous joy is but a taste of what is to come for Macayla when she is with Christ. I often wonder what Macayla perceives. Medically speaking, one would think she perceives less than the rest of us, but there are times I get the feeling she perceives that which we cannot. I would love to see what she sees sometimes. I would love to know what gets her laughing uncontrollably. Some days, I make it my objective to make her laugh, but it doesn't always work. My antics probably generate thoughts in Macayla that would be left unknown! But I look forward to the day that she and I can share that rapturous joy in heaven. We will finally have the full clarity of our Lord's work in our lives and have full perception of joy and love. It will be the best party ever.

Happy Birthday

Today, Macayla turns 7 years old. She is 58 lbs and 52 inches tall, as we discovered at a recent nutrition visit. We plan on having a party next week to celebrate her birthday and Jacob's birthday at the same time. Jacob said he wanted a "super hero" party like he did last year and he thought Macayla wanted a "Dora" party. If she could talk, I wonder if she would agree. We sang "Happy Birthday" to her this morning, but she did not seem overly joyed by it. Who can blame her considering who was doing the singing? I am amazed at how time seems to slip away. It has been an amazing seven years. In one respect it has flown by, and in another respect Macayla's birth seems like eons ago. That was a day when Macayla passed through a birth canal and her daddy passed out! I guess a lot has happened since then. She's a big girl. She's gorgeous. We are so blessed by her and we celebrate the beautiful life God has given us in Macayla. 

Unpredictable Patterns

Where is God in the midst of suffering? Where is God in the midst of the chaos we can find ourselves in? Evil exists in this world, so how can a good and loving God allow it to happen?

It's hard to read the creation story in Genesis without the Darwin/evolution debate coming to mind. But it is well worth setting that debate in the background instead of the forefront since the creation story communicates so much more. Often people want to know if the world was created in six twenty-four hour days or not, but this misses the point. As J.P. Moreland observed, an all-powerful God could have created the universe in an immeasurable instant. The question should be, "Why did it take 6 days?" God purposefully uses a process over a given amount of time. It was intentional and done with care. A casual reading of Genesis 1 gives the reader a feeling that a literary pattern is being used each day of creation. God said "Let there be..." and "it was so." God saw that it was good. God separates. God labels. There was evening, there was morning, day... The casual reader will pick up on this pattern. However, a closer study shows that the pattern is not exactly a pattern. Patterns are predictable since they repeat, but in Genesis 1 the repetition of God's activity changes order and varies each day. In other words, it feels like a pattern but it is unpredictable from our perspective. Through this unpredictable pattern, God brings order to the chaos using His words. Each successive day sets foundations and connections for following days. When it is all done, God sees what He has made and says it is "very good." It was perfect. 

Since then, things changed. The story of Adam and Eve shows us that humanity made a choice to disobey God. The ability to choose had to exist in order for us to understand love, for love is only love when it can be chosen or denied. Unfortunately, we denied love and that brought a cosmic change in creation and us. That change brought suffering and death to the world. When faced with suffering and even our own bad choices, we may want to know where God is. Where is God when we suffer due to disease? Where is He in the midst of our chaos? He is right there. Our sin and suffering will not have the last word if we trust what God has done since Adam and Eve. Christ now offers re-creation and likewise utilizes a purposeful process over time. He speaks into our chaos with His Word, brings light, separates, labels, commands and brings order. Anytime I think I have learned a pattern of how God works in my life, He seems to change things up a bit and His patterns are unpredictable. He will not be put in a box. Christ's re-creation process is not always comfortable as he separates me from my bad habits and sins. It is not comfortable when Christ judges things in my life and shows me what needs to change. But there are times of discovery as I see how His activity on previous days have set the foundations and connections for today. He even uses the suffering I experience today to prepare me for tomorrow. It is a process over time and it is not always easy or the path I would have chosen. But my hope is that at the end, when I look back over all that God has done during the days of my life, I believe it will be "very good." For He works all things together for good for those who love Him and are called according to His purpose and rest will be found in Christ.

Eyesight Surpassing Expectations

Macayla went for a check-up with the eye doctor. She is showing some deterioration in the optic nerve which is new for the doctor to report. Prior check-ups have merely shown slight changes and the optic never has always looked good. However, the doctor did state that he is impressed with the fact that Macayla's sight is doing as well as it is. She responds to light and can look at us at times when we talk to her. She seems to have difficulty focusing on objects, but I would guess she sees shapes and colors in good light. She definitely is drawn toward light sources. Overall, Macayla's function has surpassed most expectations. She is tall and has good weight. She smiles and laughs at things appropriately from time to time letting us know that she still has moments of cognitive processing of her surroundings. She is holding steady with her stomach and tube right now as well. Minimal bleeding and granulation and she tolerates all of her calories for now. I also have to say that she is a gorgeous little girl (which surpasses most expectations one should have for a child with my genetics)!

She Must Be Hungry

Sorry it has been awhile since our last update. We have had a lot on our plate lately. Macayla is doing well for the most part. She has difficulty tolerating her feedings later in the day but we still get her calories on board. Although, I am beginning to think she wants more from her feeding experience. Lately, she cannot stop putting her left hand up to her mouth and rubbing her knuckles across her teeth. Unfortunately, it has cut her knuckle open and she keeps it open. We have to restrain her left hand to keep it out of her mouth. She doesn't seem to have much interest in the right hand. Maybe it doesn't taste as good. Anyway, we seem to get close to having her knuckle healed up and she sneaks it in while we are bathing her or changing her. We have walked in at times and found that she has worked free from the restraint and there is blood all over her face and hand. Not fun. Maybe she just wants a little more red meat in her diet these days!

Overall, she is doing well. She still laughs at appropriate moments, like when Jacob gets in trouble. She has been more rigid lately but seems to relax after a warm bath and massage. She can still see colors and light and even looks right at you if your within 15 inches of her face. Some days she will lock in on the television several feet away. We are indeed blessed by how well she is doing. Her breathing and major systems are strong and steady and she has maintained good weight. But I can't blame her for wanting a little more flavor with her food.

Not Listening In Church

In some political joking lately, comic Stephen Cobert stated that Obama couldn't have known what his preacher said because "we all know no one pays attention in church!" This is humorous simply because there is some truth to it. As I have read some of the accounts of Jesus after he rose from the tomb, it was apparent that his disciples had not really paid attention to all Jesus had told them earlier. I find it interesting that the disciples did not even recognize Jesus in their first encounters with the risen Lord. To Mary Magdalen, he looked like a gardener. To the the disciples on their way to Emmaus, he was simply a traveler. To Peter and others who were fishing in a boat, he was simply a spectator on the shore. Unfortunately, many of us have mistaken Jesus for someone or something other than what he truly is.

I have had some conversations with some folks lately that reject Christianity. Our discussions revealed they have vast misunderstandings of Christianity and Christ. They appealed to misinformed historical perspectives and presuppositions about God that were more comfortable than true. They worked from feeling and experience and shunned thought and beliefs. Their descriptions of Christianity was based on the abuses of those who call themselves Christians and not based on Christ. Unfortunately, they had not paid attention to the truth, but only to bad experiences or cliches. Like the first disciples immediately after the resurrection, it did not seem plausible to them. But thank God, the disciples figured out that the most sensational news possible is the truth. Thank God that they passed on this Good News and it spread throughout the world. 

I pray that we will not let our misunderstandings of Christ guide our lives this year. Mary recognized the gardener to be Christ when He spoke her name. The Emmaus-bound disciples recognized the traveler to be Christ when He broke bread with them. Peter recognized the spectator on the shore to be Christ when He told them where the fish were. If he had only been a gardener, traveler, or spectator and not Christ, then Jesus would have been a footnote in history at best. Instead, he is who he said he is; the risen Lord. When the disciples had a personal encounter with him, it changed everything. I pray that we all have that personal encounter with Christ to see past our misunderstandings to find the truth. The truth that it was Christ, not a moral code or religion, that died for our sins on a cross and rose from the dead. 

The Hope

We have had a difficult Easter week. Jennifer's grandmother died in a car accident on Tuesday. The Easter holiday will be difficult without Nanny as she always wanted her family to congregate around her dinner table at Easter after worship. This has been a struggle for Jacob as well and I will update his page soon. However, with Easter comes that ultimate truth and hope that comes from nowhere else. Nanny followed and trusted Christ. She knew that hope and reflected it to those who knew her. Good Friday marks the day that Christ removed the sting of sin and death forever as well as commemorates his own, abbreviated funeral. The great news is that a funeral is not the end of the story. Christ rose again on that first Easter Sunday and it is by that same power that Nanny and those of us who know Christ are transformed. It is by that power we know a funeral is not the end of our story either. We grieve, no doubt, but we grieve with hope, faith, and love. We stand at a funeral and our Lord stands with us weeping as he did at Lazarus' funeral. We stand at an empty tomb and discover the story and our very life has just begun. I hope all who read this know the Hope that Nanny did. For her, that Hope is now fulfilled and realized. We thank God that we were able to see His reflection in her life. We thank God that her funeral is not the end of her story. We thank God that it is He, and not death, that has the final word. 

Uncommon Needs

I have created another blog called Uncommon Needs to share some links and helpful hints that people have shared with us for the care of a special needs child. The smoaksignal blog is a bit too organic in format to make this type of information easy to find and hopefully this new blog will be set up according to subject matter. The entries will still be from most recent to oldest, but at the top of the page is a listing of categories that will take you to entries dealing with just those subjects. I did not want to reinvent the wheel here so I will be adding links to forums and information sites we have found helpful. We welcome any input that would be helpful to families with special needs. It is in its beginning stages, so there is more work needed to make it helpful. 

Recoil

We went to a funeral home yesterday to start some initial planning for a major step in Macayla’s journey. I will try to update the Uncommon Needs blog with the more technical information as it becomes available as part of the “End of Life” entries. It is so difficult to plan a funeral for a loved one and it is paralyzing for a parent to plan the funeral of a child. However, Macayla’s funeral is one of her needs. It is a need just as much as her wheelchair and medications. It is as much of a need as the quality time and love we share with her now. It is at once a need based on logistics and a need based on love. We struggled with taking the actual step of going to the funeral home, but once we did we felt a bit of a weight lifted. Overall, it was a helpful experience, much to the credit of Mr. Derksen who graciously listened and guided our thought process.

Our discussion led to the subject of caskets it was a moment that I could feel myself shrinking from. Walking into a “showroom” (so to speak) of caskets and pondering that for your daughter is daunting and doleful. We have some ideas of how we want to proceed in that area, but the strangest part was knowing the emotions this stirred and yet we did not express any of them while standing in a room full of caskets. I began to wonder if something was wrong with me for being so stoic.

This morning, I experienced a prayer moment that shed some light on my state of mind. I realized that I have been recoiling from the emotions for quite awhile. It is as if I had placed my hand on a stove burner and jerked away. Anytime I sense the emotional response to our situation, I recoil from it so that I can function. I have apparently gotten very good at it too. During prayer this morning, I sensed Christ saying, “Let it out.” I was reminded of how he wept at Lazarus’ tomb. He was not stoic or even sanguine since he knew that Lazarus would live again (John 11). He wept along side the people at the funeral. So, this morning I let it out in a cathartic burst. Even in the midst of tears I wanted to pull away and recoil from the pain and loss death brings, but Jesus reminded me that He did not pull away. He reminded me of the grief and anguish He felt as He approached the cross. He did not recoil from the pain. He did not recoil from the anguish. He embraced it and because he did, sin and death are defeated. Because He did not recoil, Macayla’s funeral marks her step into the ultimate life. Because He did not recoil, we catch glimpses of that ultimate life now. Recoiling from the pain has caused me to miss the greater perspective of life.