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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

CHARGE Syndrome

Lush grass or cold rocky crags?

Lush grass, fertile soil, butterflies, meadow flowers, frangrant pines, soft ferns, a beautiful babbling brooke…The valley has all the makings of a perfect postcard picture. So, why do so many of us long for the mountain top experience? I finished a great book recently by Andy Andrews titled The Noticer: Sometimes, all a person needs is a little perspective. A casual story about a man who mysteriously shows up in people’s lives at an opportune time and helps them with “a little perspective” of the situations they find themselves in. It was the perfect read for the journey we are on right now and how the journey is about to become a much larger expedition for our family. As many of you know from our recent posts, we are expecting a new addition to our family…a son who is set to arrive at the end of May. If you are new to Lessons from Matthew you can catch up on the previous posts Can Lightning Strike Twice? and Lightening Update. We haven’t posted in a few weeks while we have been gathering information on what kind of expedition we may be facing with our new son. Without going into all of the details, there is substantial enough information in the different ultra-sounds and fetal heart-echo to determine that our new son may join Matthew in the CHARGE Syndrome corner. The puzzle pieces I mentioned in past posts are coming together to form a familiar pattern and picture. Nothing is certain for sure, but we are beginning to assemble the “team” that will be present…
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Lightning update…the short-term forecast

A quick update for all of you have been praying fervently for us over the last few days. We had the 3-D ultrasound today and it did confirm that our little boy does in fact have a cleft lip and possible palate. It appears to be unilateral (one-sided). As far as the ears are concerned…we will have to wait until we send the results to out geneticist friends and allow their expert eyes to take a look. We were able to get some good looks in between his hands AND feet blocking his face! We have to be honest here and say that our drive home was a little somber. It usually takes a few days to process this kind of news…we know, at least in the short-term, we will be looking at some surgeries to repair the cleft…as far as the rest of the puzzle pieces, we will have to wait and see until he graces us with his presence in late May. As a family, we covet your past and your continued prayer for us as the pieces are put together and we see a clearer picture. Please share this news as you feel led…Kevin, Theresa, Hannah, Megan, Matthew and Sarah Anne…and baby boy!

Reach for the stars…

It has been a week of praying, reflecting and preparing for what is to come…not unlike this season we will embark on in the coming weeks that many call lent. I will get to an update on where we are at with our son-in-the-making after a brief story of what Matthew was up to this past week. When I put Matthew to bed on Sunday night I noticed a plastic star in his mouth. It wasn’t the usual puzzle piece but I didn’t think it was too out of the ordinary at the time. During my drive to work the next morning I had a realization thought that made my heart skip a beat. I immediately called Theresa and asked her to remove the half shelving unit from his room…a shelving unit he is fond of moving around to different locations in his bedroom. Matthew has several little stars placed on the ceiling around the light fixture which will glow in the dark when the light is turned off. None of them were missing when we snapped the picture shown here on Sunday. He had pulled one of our stools from the kitchen island into his room, placed it on top the shelving unit and proceeded to try to climb up his therapy swing. The thought was…remove the stool, remove the danger. My apologies for the bad photo quality…it was not my highest priority at the time…not bad though for a stop-and-go, grab the son manuever, huh? Apparently, the stool was optional and not needed. The only way he could have reached the top…
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Can lightning strike twice? Please Pray, it may have…

According to NOAA (National Oceanic and Atmospheric Administration), the odds of getting struck by lightning in one’s lifetime is 1:10,000. One would have better odds of this phenomenon happening than to have a child born with CHARGE Syndrome (1:12,000). Yesterday we had the usual monthly appointment with the OB with Theresa being at 22 weeks gestation. I will let her, in her own words describe the morning: “…As I was showering and getting ready yesterday I was thinking about the day ahead and the much-anticipated ultrasound to hopefully find out the baby’s gender. As I was thinking about the baby I was overwhelmed with the thought that THIS baby was meticulously created by God for our family. Down to each hair (or lack there of) on its head. Whether a boy, or girl it was what God planned for our family and would be the best….. While the news received just moments after being told “it’s a boy!” was shocking, and not what we were expecting, I think we are better prepared than most to receive it. We have been walking this “special” road for almost 11 years together already. Knowing that Kevin, my rock was sitting next to me to continue to hold my hand through this next portion of our walk was my encouragement….not that it could stop the flow of my tears. After finding out the news that our baby was going to be physically not as perfect as we hoped I was still quite emotional as we stopped…
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Wrapped in a papoose…

After nearly two years of blogging “Lessons from Matthew” some posts get more attention than others when it comes to people sharing and ones that get internet traffic through being “googled”. One of these posts was the one I wrote with the title “Willing or unwilling…?” from September of 2010. I want to take the time as I approach the two-year mark to revive a few of the older and popular posts. If you have a favorite please let me know…I am in the process of compiling chapters of the printed book version of “Lessons from Matthew” and would love to have any suggestions to add to the pages of the book. So, here is “Willing or unwilling…?” I think I am safe to assume that most of us would not rank a visit to the dentist as one of our favorite things to do. The annual or semi-annual ritual of having ones teeth cleaned can put even the most detailed person on edge. Afterall, the visit really is a report card of the progress of our daily regime of brushing, flossing and laying off the sweets…or lack of. Personally, I have experienced the good and the bad of an office visit to the dentist. The bad included the final demise of a tooth that had a root canal many years ago, cracking in half years after that and finally progressing to the point that it had to be pulled. Many of you may be squirming in your chair at this point…I…
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Child #5 – was this planned…?

In a way only God’s creation can display, our dank, gray world of leafless trees and brown grass was transformed into a beautiful display of white winter over the past few days as a passing front brought with it colder air into our area. For those of us on the near shores of Lake Michigan we are all familiar with the term Lake Effect. I will come back to that though in a moment… Theresa was at 18 weeks as we went for another OB appointment and a subsequent ultra-sound earlier this week. The baby was not cooperative and did not present a good look as to what gender may be in our future as we will welcome child number 5. Not only was the baby in a bad position but he/she was moving constantly. That second cause may have been partly due to the Coke slushy Theresa “had to have” on the way to the appointment. Since when does my wife drink Coke slushies? It dawned on me this week that I may have not formally announced that we were expecting another child in June of this new year. Well, now you know. With Theresa being labeled as “high risk” due to Matthew’s issues, age (sorry honey) and other previous c-sections we have many opportunities to sit in the waiting room…every 4 weeks now and every week when we get closer. An observation I made at the OB office is that I have seldom seen other men there. I have…
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seashell macaroni…different from elbow macaroni?

The title about seashell macaroni comes from a discussion we had in our home about macaroni styles. First I want to tell you a story about Matthew and how he enjoyed the 2011 holiday season…especially wrapped gifts. It will lead us in to the differences between seashell macaroni and other macaroni styles…are they really different? Matthew has been gaining interest in wrapped packages in the last few years as he has learned packages usually mean one or two or more new puzzle pieces. We had to keep any wrapped package out of sight until Christmas morning this year with his urge to shake and tear open anything that resembled a present. On Christmas morning he had a stack of six or so wrapped boxes in front of him. He took each one, shook it and if it had the familiar sound of a Discovery Toys Place and Trace puzzle as the contents he ripped into with glee. If it lacked that sound…it was tossed aside and opened later in the day when the buzz of the new puzzles wore off. For this reason it took him most of the day to open all of his gifts. The fun of wrapped packages went on for another week. I was washing dishes one day and could hear Matthew frantically pressing buttons on his DVD player until he had it at just the right spot on a particular Signing Times episode where Rachel Coleman was teaching several words around the theme of a birthday party. Matthew had paused the movie…
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For unto us a child is born…

I just had to share this picture of Matthew. It was taken as he entered the great room as we were decorating the tree a few days after Thanksgiving. The look on his face says it all! I have had a gap in my writing for this blog due to a demanding schedule this time of year that includes a yearly tradition of a musical production at our church. It really is a labor of love but it can be a little grueling. First there is the hanging of about 180,000 lights, followed by the building of a stage extension from our main platform. The set comes next along with the details of decorating it to make it come alive. This step is immediately followed by a week of dress rehearsals and then 10 performances over a two week period. I share all of these details with you not to show you how resilient I am or to get a pat on the back for what I do. This is my 12th year in my role as a stage/set design manager and a person who is part of leading the massive team of volunteers who make this production happen so the nearly 15,000 people who attend it annually would see and hear a clear presentation of a story that began over 2,000 years ago. There are many stories that are shared of new hope and renewed lives over the many years. I am in awe of the selfless serving that takes…
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Thankful…for soggy gloves

One of the most unnerving feelings is walking along, not paying attention and step on something both warm and wet. In our home we have maybe three things that could make such a situation happen. Sarah Anne who is two and in the process of learning and earning the privilege of wearing big girl panties, one of our three dogs who didn’t make it outside in time…or one of Matthew’s gloves that he has been chewing on most of the day. I am not talking just a little damp…I am talking about holding more saliva than knitted raw materials can handle. A glove, if thrown against the wall would probably stick and slide slowly down. Why would I be thankful for such a thing? The way I see it, especially this week as we take time to celebrate Thanksgiving and recall our many blessings, is that the vast assortment of gloves that Matthew has are a lot like the people in our lives. Family, friends, neighbors, the guy behind the counter at the gas station. Some of them are colorful, some of them look small at first appearance but when stretched show what they are all about, many keep us warm and protected…but some are wet, soggy and uncomfortable at times. Events and experiences would be included in this glove analogy as well. We can only be said to be alive in those moments when our hearts are conscious of our treasures.  – Thornton Wilder As we enter in to…
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Ever “miss the boat…?”

I can identify with this cartoon. It is a popular Hallmark/Shoebox greeting card drawn by artist Dan Regan. I can relate because I very well could be one of those dinosaurs. I can easily miss things the first, or second or the twentieth time I see or read something. I can get comfortable in the routine and often miss the obvious. I took the advice recently from author Dan Miller who was describing breaking habits or being in a rut…he mentions driving a different route to work, trying a new restaurant, reading a book on a new subject to stimulate a new idea or a fresh look at things. I drove different routes to work on several days last week. Instead of the same boring commute listening to mindless chatter on the radio I saw some amazing things. A new strip mall nearly full that I never noticed before, deer in a different field, turkeys in another, a housing development that is now almost full. I noticed because I pulled myself out of the routine. The best part of this exercise…all of the new things I just mentioned are on my “normal” route. I am having fun thinking about the many times Matthew has a moment of “I get it!” When he see’s something new and puts two things together for the first time. He gets a confident smile, almost smug. He did this recently after our trip to Tennessee and our stay at a hotel with a pool. We don’t get…
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