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.

Jesus Made Mud to Bring Light

Jacob was saying bedtime prayers recently. I asked him to think of something really neat about God to start off the prayer. He said, “God made…” At this point I’m expecting any one of a dozen possibilities from creation, like “God made the sun” or “God made me.” Instead, Jacob says, “God made mud.” He gets a giddy little grin on his face. Though technically true, I knew his motivation was to be silly so I tried to get him to think of something else. He sticks with the mud. Then the Holy Spirit reminded me. I said, “Jacob, Jesus made mud one time and wiped it on a man’s eyes.” Jacob naturally asked why Jesus would do such a thing. We talked about the story from John 9 about a man born blind that Jesus healed. Jesus spit in the dirt, made mud, and put it on the man’s eyes. When the man washed it off, he could see. Jacob thought that it was a cool story, especially the part of Jesus spitting and making mud. Jacob wanted to try and make mud that way too.

The next morning, Jacob wanted to read from the Bible he received for Christmas. I did not have a planned text to read and we ended up on Psalm 27:1 “The LORD gives me light and saves me. Why should I fear anyone? The LORD is my place of safety, why should I be afraid?” (NIRV) Then I remembered our prayers from the night before and we turned to John 9. As we read the story, I was reminded that Jesus made a statement just before he made mud. He said, “While I am in the world, I am the Light of the world.” (9:5) Then Jesus made the mud and put it in the man’s eyes. The man could see for the first time. Jesus used mud to bring light. Why mud? This story starts off with a related question. When the disciples saw the blind man they asked if the man’s sins or the sins of his parent brought on the blindness. Jesus said neither. He said this man was born blind so that the works of God might be displayed in his life. Spit and dirt would be used to bring light into the blind man’s life. This man’s blindness would be used to demonstrate that Jesus is the Light of the world. Jacob and I learned that God is light and that light is not only something we can see but also it is the light by which we see everything else. Psalm 27 and John 9 remind us that in the light we are saved from fear. It is hard to understand why we have to go through the mud to get there sometimes, but in a fallen world there is quite a bit of mud. Battens disease is one example of that mud, but when it is washed away we will see clearly, for the first time. When God allows or even places any mud in our lives, it will be so we can wash it away and say as the blind man, “one thing I do know, that though I was blind, now I see.” In that Light, there is love that casts out all fear and brings salvation.

Back to School and Wet Sheets

Macayla has gone back to school and it has helped her greatly. She enjoys all the activity and music. Her tube site has gotten better, but she still is not completely healed. We still have granulation around the site and some of it is needed to finish closing up the track where her tube comes through. It still leaks around the tube itself and this has proven to be messy. Between the leaking stomach contents and explosive diapers, we have changed her sheets every day for two weeks and twice on some days. BB (Macayla’s grandmother) said that Macayla just wants hotel style room service with fresh linens on the bed everyday. She is getting it lately. Fortunately, she never liked chocolate, so I don’t have to worry about leaving chocolate on her pillow. In the meantime, check out the new photos on the image gallery page. 2007 was a big year and a fast year. It seems like we barely had time to experience it so I’m glad we have photos to remember what we did.

Two Years

It was two years ago today that we received notification of Macayla’s diagnosis. It was a colder and cloudy day. Today is more pleasant. But we had to take Macayla in to have her tube switched out. We finally got a Mic-Key button put in. Mic-Key feeding tubes are held in place by a balloon inside the stomach that is filled with water. It has a locking mechanism that the feeding tubes lock onto. The advantage to these tubes is that we can change them out at home. We will simply deflate the balloon and the tube pulls out and then we can insert a new one and inflate it to keep it in place. It has to be changed more often than other tubes, but it is less traumatic to her site and doesn’t require a drive to the doctor’s office. So Macayla got a new tube for Christmas. Our nurse quipped that everyone wants Mickey for Christmas, but this was not what Macayla had in mind! The tube change went great and Macayla only bled a minimal amount. Her site is healing well. We went down afterward and had a contrast study on x-ray that showed that the new tube is flowing correctly.

Much has changed with Macayla in two years. She was eating, talking, and walking two years ago. She ate cheese constantly. She loved filling up her little purses with all the toys she could fit into them. They would overflow with stuff. She takes after her mom! She liked playing with any animal. She now is immobile. She doesn’t eat or drink or talk. She is much taller and thinner than she was two years ago. She still has a great smile, a quirky sense of humor, a great memory and still loves movies. It has been a long two years in some respects, but it has been a blur. We stay so focused at times that suddenly we look up and discover that two years has passed without our full realization. Where will we be two years from now?