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.

Valentines

It is funny to watch these commercials on television for Valentines Day and the ideals of dating, romantic dinners, candles, intimacy, and ooy-gooy moments between men and women. Then there is reality. In our home, our Valentines consisted of combating Jacob’s 105.8 fever that resulted from the flu. We were cleaning up Macayla’s feeding tube site from cauterizing it the previous day with silver nitrate. We had bloody stomachs and yellow snot. Our romantic dinner (which was steak) was eaten quickly on a table half covered in paperwork and prescription medicines. Instead of candles, roses, and whispering sweet nothings, we had thermometers, Kleenex, and the honking of snot-filled nostrils. I have yet to see any marketing for Valentines that reflects this scenario. Companies like Kleenex, Therma Scan, and Motrin should explore marketing their products on higher concepts of love. Maybe it is in these scenarios that we begin to discover love more appropriately. It is easy to love in the ideal world of television fantasy where everyone is free of faults, flaws and trials. We live in a culture that claims true love is known only when it is a felt emotion. True love is known but not always a felt emotion. Emotions come and go, but knowledge remains. Maybe true love is discovered when we love in spite of its cost or benefit. Maybe true love is discovered in the faults, flaws and trials. I pray my knowledge of love grows this year because as I am typing there is a little nose that needs blowing, again. I honestly cannot claim that the emotion I have right now is ooy-gooy love. The only ooy-gooy I feel is in the tissue. So, I pray most of all that those around me know I love them with more than passing emotion.

Wheels!

Macayla has new wheels! She just got a new wheelchair made by Ormesa. It is company in Italy that seems to be making some good products. Her chair has been thought out for daily use. It actually has a sun visor and rain cover. These seem to be absent on other brands we have shopped. The rain cover is always on the chair if the visor is attached and it covers all of Macayla and the chair. There is also a thermal cover that zips up around Macayla to keep her warm. The chair looks similar to a big stroller and is much more comfortable than her other chair. We are still learning the best ways to use the chair, but overall it is a vast improvement over our last chair. 

Our other wheels (the van) is back from the car doctor. The ignition coil and coil wire was bad and had to be replaced. This is the part that is responsible for making all the spark plugs fire in the proper sequence. We came out of that procedure with a lot less damage than we anticipated. Still, I would like to see these presidential candidates promote a universal car care program! I'd love to only have to pay a copay when the cars are repaired.

Update

Macayla’s feeding tube has done better overall, but we are still experiencing granulation that never seems to stop. She still gets blood in her stomach from time to time but we have not seen the levels of blood that we did before December. She is still tolerating food well and even put on some needed weight. Our hope is that we will not end up where we were last summer. She just does not tolerate foreign objects in her tummy. Maybe that’s a good thing if she were ever to be a teenager. It might have prevented her from being big into body piercing! But I wish she could handle this one body piercing (her feeding tube) better.

Our van has decided to finally quit. It threatened to quit for several weeks now and it finally bit the dust this morning. We are waiting on the automotive MD’s assessment. It may require major surgery but hopefully it will be reasonable. I wish car insurance was like health insurance and all repairs and tune-ups could be covered just as our check-ups and surgeries are covered. I wonder if the presidential candidates would consider running on a platform of universal car-repair insurance coverage? Allstate and State Farm would probably hire a hit man to remove that candidate; lowest bid of course.

Jennifer is not quite as recovered, as we would like. She still feels discomfort and pressure that should be better by now. We are doing a couple of studies to see if all is as it should be and trying to discern how and when to go back to work. Soon time will be of the essence on these decisions.