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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Latest Posts

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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He’s my father…

Well, back to the blog…I enjoyed a nice 7 days of fishing and rest. I also had the chance to catch up on some reading and take time to reflect on the past 1/2 year…after all, we are just a few days shy of the half way point of the year. How are you doing with your plans, goals and dreams you had put in place at the turn of the year?   This past weekend was Father’s day and what began as a trip to church and an afternoon with my family has lengthened and has had me in constant thought of the words our pastor echoed of the words Jesus spoke to his disciples just hours before he was going to be taken away from them. We have begun a summer series from the book of John that is referred to the Upper Room Discourse…starting in chapter 14. “Do not let your hearts be troubled. Trust in God; trust also in me. In my Father’s house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.” John 14:1-4 He went on to explain the preparation of our “room” in heaven that is being prepared for us….
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Learning from failures…

Memorial Day was my second full day of spending time with Matthew at home while the rest of the family was taking part in a long holiday weekend dog show. Matthew and I have discovered a new game with Play-Doh, pressing it into the blank puzzle piece boards to form letters…typing on mom’s computer…throwing my cordless drill down the stairs while I am attempting a few home improvement projects. Good, quality bonding time. In the morning I was watching Matthew attempting to retrieve some of his letter puzzle pieces from under the sofa. His attempts were comical and he failed several times but eventually achieved his ultimate goal of getting at the pieces. I guess I could have helped him…but he never asked and was determined to get it done on his own. Several times he was overcome by the sofa and was quickly covered by it’s mass. I did step in when he was in peril and couldn’t back himself out of the situation. He promptly signed to me to “go” after freeing him. I was inspired by his resolve. “Don’t let what you cannot do interfere with what you can do.”  John Wooden legendary basketball coach Much of my reading lately has taken me down the road of books about successful people and how they obtained success in their lives. Success defined as meaningful contributions such as a successful business, a fulfilling life of serving God, a prominent athlete, etc. There is one common denominator in all of the stories…people were not afraid…
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Flash Fear moments…

There have been only a handful of times in my liife where I have been in a state of what I like to call flash fear. When your whole body is frozen in one moment before you instinctively react and create a plan in your mind. This weekend I had one of those moments with Matthew…I will come back to that in a moment. “The wise man in the storm prays to God, not for safety from danger, but deliverance from fear.” Ralph Waldo Emerson I have experienced that flash fear feeling one time while accompanying a friend on a goat hunt in the Northern Rockies in British Columbia as we rounded a logging road on foot and came face-to-face with a sow bear and her two cubs. I have experienced that flash fear while on a moose hunt in Alaska as we landed on the top of bluffs in a canvas sided Piper Cub plane…only to “fall off” the other side to gain the lift we needed to fly…like a roller coaster without the benefit of rails or safety bars. I have felt that fear as Matthew was born and was whisked away to the Neonatal Intensive care because of his struggle to breathe, all the while as they were wheeling a “crash cart” into Theresa’s room after the emergency “C” section to deliver Matthew…Several units of blood behind it. The experiences that we have continue to shape and form us, good or bad on how we react in every…
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Water, some down some spit out…

It has been an interesting few weeks in our house with the new found energy surfacing from the apparent success of Matthew’s mitral valve repair surgery. One of Matthew’s new interests is water…and with no prejudice on where it comes from…the sink, tub, toilet or his favorite, the cool dispenser that provides non-stop ice and water on the front of the refrigerator. The current protocol at home is: Bathroom door locked at all times, no beverage glasses left out unless they are on top of the refrigerator, refrigerator front dispenser is forever on the “lock” feature and if you rinse a dish, no water can remain in it while in the sink…if any of these are missed it is assumed by Matthew that he has the “all clear” to enjoy. Theresa has been training a couple of new caregivers the past few weeks…It is kind of comical when we stop to think about some of the “rules” in our house and how strange they may sound to someone new. If one morning I walked on top of the water across the Potomac River, the headline that afternoon would read: “President Can’t Swim.” Lyndon B. Johnson I guess you just have to look at it from a different direction…The funny thing we realized after the initial irritation of stepping in a puddle with a fresh pair if socks repeatedly or picking up another batch of soaked school papers on the island was that when we started to regulate his water play-time we noticed that…
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Super Matt, Super Mom

I thought today would be an appropriate time to recall some content from a previous post A mom or a mule? where I talked about the strength it takes to be mom…especially of a child with special needs. I have read a particular article over and over that was written by columnist Lori Borgman…It is now buried in the archives of her writing, written almost 10 years ago, it is still being circulated frequently. Here is an excerpt: “…I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You…
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Wounds or Scars…

May 1…exactly 1 month since Matthew had his heart surgery to repair his leaking mitral valve. Interestingly, it has only been in the last week or maybe a little more that Matthew has allowed us to raise his shirt and look at his chest…He even posed for some pictures for me today. The wound, or incision has almost completely healed now…even though his chest may not be completely fused at this time. Of course, I am always looking for topics and lessons that I could write about for the blog, I started to think about why Matthew didn’t want us to look at his wound, but would allow us to now look at his scar? “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”  Harry Crews I started to recall the many scars on my body…as a carpenter I have many of them on my hands, some on my arms and legs and even a few on my head. Each one has a story that goes with it. Some of them I am not too proud of as they were the result of doing something stupid like shooting a nail through my finger with a nail gun or the improper use of a utility knife. Matthew has a few that were the result of carelessnes or simply caused by an unfortunate accident. Today I counted 7 larger scars on Matthew’s body that were intentional, a result of…
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