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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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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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Where’s your “baby”?

  Where did I put my baby? A question Matthew will ask himself a few times a day. I have written before about how Matthew has a fascination with babies. He likes to look at the little toes and fingers, then eventually chew them off…fake babies, not real ones. Matthew has an assortment of babies, some small, some large and some are…just pieces. Matthew is perfectly content with one arm of one of his babies. It brings up visions of the movie Toy Story and the neighbor kid named Sid. This past week as we were moving our piano away from the front picture window Matthew had perfect access to the window to open it the full 4 inches, a safety feature I had to rig for his own safety. He took full advantage to toss one unsuspecting baby on the bushes below. I was not just a drop-and-run, it was a toss to the side and back for a perfect landing on an over sized yew. Matthew has quite a talent for placing his babies just where he wants them. He also has a perfect recollection of where they were put after just a little thought. If we retrieve one for him we need to show him that we have it so he will not pester us to take him to the spot of the last deposit. I need the same drive to remember where I put my “babies”. That incident made me think of the “babies” in my…
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Where are your Crayons?

While I was growing up and in grade school I was not the stellar student. I had a hard time sitting in a chair at a desk and concentrating on what was happening in front of the class. I was placed away from the windows on purpose as I had a tendency to look out the window and “daydream” when I should have been doing schoolwork. I was constantly being confronted with the fact that I was “doodling” on my papers and on by textbook covers…so was my life as a right brained child. What my teachers didn’t see was my vivid imagination that took me places I could not physically go. Far away lands that I could draw in my head and then transfer to paper all the while appearing as if I was not listening or participating in the class discussion of nouns and verbs. I actually could concentrate better if my hands were busy. My goal here is not to start a debate about learning styles or the educational system, but rather to point out that we have a tendency in this information era to cram our minds with facts, figures and useless trivia to the point that we can become so saturated with information that we dull our ability to be creative and think on our own. “I am enough of an artist to draw freely upon my imagination. Imagination is more important that knowledge. Knowledge is limited. Imagination encircles the world.”  Albert Einstein I love how Matthew can…
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I’m lost! Where’s the line?…

Matthew did it again. He stumped me…made me think long and hard about what he was thinking about when he took the bin of Mr. Potato Head parts, pulled all the arms out and laid them…I guess you would call it shoulder to hand in a line down our hallway. It was an interesting sight that I knew someday I would write about so I took a picture and filed it away. I know, first of all, I need to explain why we have so many Mr. Potato Head arms…it is kind of freaky looking. But, we have learned that when we find something that motivates Matthew and keeps his attention we scour garage sales and buy as many arms, eyes and teeth we can find…for some unknown reason they are a delicacy, much like caviar. Back to the line…As we are entering into fall and the leaves are being changed into a beautiful canvas of yellows, reds and orange we are hearing in our part of the North the familiar sounds of honking. Not of car horns but of Canadian geese on their way through Michigan on their way South for the winter months. It is quite interesting watching them fly overhead barking orders at each other, each one taking their place in the front of the line to take their turn at cutting the resistance of the wind and allowing the others in line to take a rest and kind of coast along with the formation…the farther back in…
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Kiss…please

It took about 8 years for Matthew to grasp the concept of giving and receiving kisses. It has been fun to experience over the past few years his attempts at giving and receiving some form of affection. He pretty much is settled into the routine at bedtime after his final tube feeding you can say kiss-kiss and he will grab the back of your head and pull you in to his forehead. I have written about his road to affection a few months back in What’s in a kiss… . We cherish every moment that he wants to just sit on our lap, which at anytime could turn into a rare moment of a kissing marathon, where he will repeatedly will pucker up and lean in. I wanted to write about the act of showing affection as I was reminded of how powerful it is…not only to the recipients (especially for my wife, Theresa), but also how important it is that our kids see a healthy showing of what affection is. Theresa will be the first to nod her head in approval of me saying that I forget the small things like a gentle, meaningful touch or an unsolicited hug. I just am not a “touchy, feely” kind of guy…but that is not an excuse to not work on that area of my life. “You accuse a woman of wavering affections, but don’t blame her; she is just looking for a consistent man.”  Johann Wofgang von Goethe Ouch…than one hurt Johann. About as much as…
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If you pray for a beach, expect sand…

Summer is quickly coming to a close. In some strange way I am actually glad. Fall has always been one of my favorite seasons. I think it has something to do with a bountiful harvest and seeing the fruits of hard labor. Our summer was filled with missions trips, 3 county fairs, a two week task of caring for a friends hobby farm, a few rabbit shows and a few AKC dog shows…I am getting tired all over again. You may have noticed that I have taken a little time off from posting a weekly blog during the later part of the summer. The main reason for this is to give us a break…me the writer and you the reader. I found it more important to read, research and pray instead of just writing to fill a blog post. My hope is to continue to inspire and to inform. As the sub-title of this blog indicates, my hope is to be able to give you a snapshot of living with a child/sibling with CHARGE Syndrome and special needs. We have much to report on the good side of what has been happening with Matthew. The “official” results of his visit with the endocrinologist: after a three year period of no weight gain and no growth, Matthew has gained 6 pounds and has grown an inch since his heart surgery to repair a leaking mitral valve back on April 1 of this year. He has probably progressed more to date as this appointment was…
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