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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tag Archive: Special Needs Children

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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Defense or Offense?

Those of us in the Troupe family are quickly becoming experts in the home security business… only it is from the inside out. The biometric fingerprint scanner was an overwhelming success. Matthew has tried many times to crack the code and figure out how this new door knob works. The “Rest of the Story…” as the late Paul Harvey would have said, is that now Matthew has moved on to other means of exiting our home. The last couple of weeks he has had me scouring the hardware isles and the garage for gadgets that will keep our boy in the house. Just days after the finger print scanner was installed Matthew successfully climbed over a shelving unit, moved a stack of storage bins away from a basement window, finally realized that there are two latches instead of one on each of our windows, opened the window and climbed out. The next chase was on. It was only by God’s intervention that Theresa noticed Matthew was not in his room, as he was 30 seconds ago, and saw him running down the sidewalk from his bedroom window. A search of the compound revealed his escape route. My adaptations this week included little clamp locks on the rails of the window…allowing the windows to only be opened just a crack. Troupe compound analysis: doors…check, windows…check…now we can take a deep breath. Or can we? The very next day Matthew realized the nice selling feature of the sliding style window…in the open position if one…
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Catch me if you can…

We have have now entered a new phase in the attempt to stay one step ahead of our precious boy…keeping him in the house and from dashing out the door and down the street. In the span of a few days…Matthew 5 – family 0…We have thwarted a few of his attempts with the rattle of the gate at the top of the stairs giving away his lack of stealth. This past weekend I was enjoying a morning of catching up on some reading with my only task along with a short “honey do” list was to spend the day with Matthew while Theresa and Sarah Anne were retrieving the older siblings from their visit to Detroit. I failed early…10:00 am. I heard the rattle of the gate, his patter down the stairs and the click of the dead-bolt. By the time I opened the gate and reached the open door Matthew was almost halfway across the neighbors yard at a full run. I started my sprint and, not to brag, but this big frame was able to catch him a few doors down near the corner from us. As I stood there with a firm grip on Matthew’s jammie collar (his collar, not his neck) I took a moment to catch my wind and to breathe in the sweet air of victory after the chase…It was then I noticed my neighbors loading their children into a stroller to enjoy a leisurley walk in our quiet neighborhood. They were posed  in a frozen position with a…
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Do you care?

I am in the middle of a great book written by Ian Brown called The Boy in the Moon. Ian is the father of a boy with a rare genetic disorder not unlike the one that Matthew has been diagnosed with. Even though I am not finished with it yet I have been able to resonate with many of the things that Ian has expressed and experienced. There is a certain kinship as I scan the pages and compare his stories of caring for his son, both good ones of victories and milestones and the not so good ones of staying up all night, cleaning poo, and not being able to communicate. He made a reference to a system they had for storing toys, educational toys, ones from local agencies and therapists that accumulated in different rooms of their home. He recalled a moment when he peered at the label on one of the toys that had the name of an agency with an address to return it in the chance that it was no longer needed, or as he mention, when his child had progressed beyond that toy. It was a defeated moment. His child may never “get it.” We have had those moments too. Cabinets filled with hope, but no interest from Matthew. A new therapy a different doctor, a better conference, a better, more caring system….. One could easily get overwhelmed with feelings of defeat when beaten down with sleep deprivation and having to constantly watch for harm to person, to…
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Persistence

A couple of quotes came across my eyes this week while reading. Both were from former presidents so I thought that it would be appropriate to share them with the coming Fourth of July weekend. This week will also mark Matthew’s 10 year birthday. I will not go into the details and get all mushy like I did last year around his birthday…I will let you catch up here with this link…you will be rewarded with the most precious video of Matthew meeting Sarah Anne for the first time What’s in a kiss? . Over the past weekend we discovered another hidden talent…along with the ones he sharpened this weekend in the Special Treasures room at our church, he sharpened his ability to find “chinks in the armor” as he found on the very large mirror in his room at church a small crack in the bottom. Before he could be stopped he made the small crack be the source of the mirror now being in two pieces. The other sharpening skill was that of getting into something that he is supposed to stay out of…cabinets with little locks on them. No problem, just yank on the doors until the eyelets break loose…I sheepishly checked my in-box at work this morning knowing that these would be on the top of the list of “have-to-do” this week. There are advantages to being the maintenance dude where Matthew decides to wreak havoc…I can use the same proven techniques I am having to use…
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