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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tag Archive: Leaking Mitral Valve Repair

A blessing, not a curse?

Okay, enough emails and messages have come my way…”WE WANT AND UPDATE!” Thank you for your interest and your prayer for the Troupe’s. December is such a busy month for our family as I am sure it is for yours as well. Taking a break is good. So is getting back to work and writing! Today was a banner day in the Troupe household. Tears were shed today (tears of joy) as Hannah and Megan proclaimed their public profession of faith along with being baptized in front of nearly 2,000 congregation members, family and friends. I cannot think of any other event, short of their births that has brought as many tears and joy as listening to your children tell of their love for Jesus and their strong desire to follow in his footsteps. Awesome. No award, ribbon, trophy, diploma, certificate or plaque will ever match up…ever. I think the words they both spoke of their journey to this point were full of knowing what pain, sacrifice and hard work feels like and what it means to die to self. I think this especially rings true having two siblings who have special needs. They both talked of missions trips they had been a part of where they were stretched in their faith. There is great rewards when we abandon things that give us comfort…it leads us to being broken. Sadly, most people are afraid of brokeness and avoid moving away from comfort at all costs. When we abandon the things…
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Give thanks…with a grateful heart

A new buzzword that has cropped up this year is the term “black Friday creep.” We barely made it in to the month of November and the holiday ads began to bombard our screens and speakers. I, for one, have never understood the concept of black Friday. I hate to shop…I am a buyer, not a shopper. If I am in need of something that I actually have to pay retail for instead of finding it at a garage sale or a second-hand store I will research the item then go buy it. the only exception is that I like to grocery shop. I let Theresa, who loves a good bargain do most of our other shopping. Most of my retail purchases have to do with car parts and home repair, the former to keep our vehicles with a combined mileage of nearly 750,000 miles running, and the latter to fix and keep ahead of our little home wrecker named Matthew. As we approach this week and count our blessings I cannot think of any “thing” I would want so bad that I would willingly put myself in the arena of black Friday. There is just too much to be grateful for what we as a family already have. “To be grateful is to recognize the Love of God in everything He has given us – and He has given us everything. Every breath we draw is a gift of His love, every moment of existence is a grace, for it…
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No poop for me…

This year Theresa and I celebrated our 21st anniversary in style. We started the day with a doctor’s appointment for Isaac and Matthew, a tandem visit to the eye doctor, with Sarah Anne tagging along for the ride. Our romantic stop was to Sandy’s Donuts, a West side favorite, to pick up a few of our favorite fried cakes. Sandy’s has been a special treat from our first days of dating. I made a grocery run in the afternoon to pick up some staples to prepare one of Theresa’s favorite meals…breaded chicken strips and my famous hand cut french fries, double dip fried to perfection. Just as we were finishing our meal things turned bad…Matthew came running out of his bedroom, sans a diaper and we discovered that he decided to “paint” a mural for us on his bedroom wall and window. Only not with paint. This occasional spark of creativity from our little Michelangelo unfortunately is not an uncommon occurence. The protocol is the same, work from the ceiling down the walls to the floor. Apparently we have become quite proficient at this task. All the while Theresa and I were sharing our anniversary gift, Sarah Anne was frantically searching for the box of Swiffer pads that we had recently relocated to another spot. By the time she found them we were already snapping our gloves off and placing the bio hazard in the trash. The scene that happened next melted my heart…and became the thought process for this blog entry. After inspection of Matthew’s room, Sarah Anne…
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Grace…not so amazing for you?

Most things that Matthew does either makes us laugh…or cry. Which ever one we may be experiencing gives us the opportunity to learn something. Recently Matthew started the morning frantically searching for a sock. A single sock. After summoning one of us to his bedroom closet to clear the multiple levels of security to be opened (which, by-the-way, needs another level), he found a prized sock and placed it on his hand. As with most cases where he triumphs and completes something on his “list” if things to do…he did not make his normal happy noises. Instead, he went about his day with his socked hand raised up and out in front of him. We were quite curious to find out what was under the sock. Matthew was not about to give up his sock and the mystery without resistance. It took a little restraint to hold him firmly and to get a hold of the hand with the sock which was writhing around and avoiding capture much like an anaconda. Upon removing the sock we found a small sliver of wood jammed under a fingernail. With a little coaxing (and more restraint) we were able to tweeze out the sliver. Matthew kept looking at his hand, first with concern, then with a smile and finally a laugh. The sock…tossed over the back of the sofa and out of sight. So simple…have a problem, a pain, a concern? A little exposure and a willingness to ask and accept help is all it takes. Easy, right? I…
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Never once did we ever walk alone…

Many of you who have been keeping up with our prayer requests know that Isaac had to have a procedure this past week to have his esophagus reopened at the place where it had been fused just a few days after he was born. Scar tissue had completely closed off the opening in just a few weeks since the last look at it. We are now dealing with the complications that occurred while this procedure was being done. The short version is that he had his right lung collapse from a perforation in his esophagus and possibly his lung. The lung collapse and leaking fluid into his chest cavity keeps him in the Pediatric ICU as I write this. Our stay will be as long as it takes to heal his esophagus and to have the chest tube removed. Our biggest need for prayer is for no infection. We also pray for the increased temperature he has been running. Crud, another hospital stay. Another week or more of living at the hospital. Another week of our family being separated. Another week of having to die to self-centeredness. Another week of seeing Isaac in pain. Another week of pain for us. As I was sitting in his dark room the other night I had allowed a hint of “this sucks” to enter my thoughts…until I was blessed with a new friend sending this to us. Last Saturday, after knowing that Isaac was facing having a nose tube placed for an indefinite amount…
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Feeling the heat, but not giving in to the burn…

Exactly a week ago I was in the back of an ambulance on the way to the hospital with Isaac. As I was rhythmically squeezing an AMBU bag, continuing to provide oxygen to Isaac’s lungs the EMT with us in the back called in Isaac’s weak vitals and continued prepping him for our arrival at the hospital. Theresa was left behind…a wreck after providing the first 20 minutes of CPR. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Ephesians 6:16 (NIV) With a week in the hospital behind us…we are now truly able to see the incredible triumphs and the “flaming arrows” that we experienced, an expected result when God has or is working in a powerful way. Spiritual warfare is a real thing and cannot be dismissed. We have learned and continue to learn that in dodging the arrows we may feel the heat from them but we do not have to take the bait and experience the burn. Even though it can be hard in the moment…recognize what the real reason may be for “bad” things happening. We had a tough week for sure. I stayed at the hospital at night with Isaac to stay clear of the cold/fevers that were running rampant at home with Theresa and the rest of the family. I woke up every morning from my transformer chair/bed in Isaac’s room in the Peds ICU on the eight floor with a great view of the rising sun….
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Amplitude…well blended and balanced

Recently we were invited to watch a friend compete in a bicycling event held in our own home town. This was my first time attending a professional bicycling road race and I was taken in by the excitement of the crowd as the various levels of beginner, amateur and professional racers took their turn. I was intrigued by the various pieces of equipment; special bikes with barely any weight, shoes and pedals, seats, sleek helmets, and all the different wheel and tire combinations. All this equipment is intended to make the rider better and faster. As one looks deeper into the sport there is conditioning, diet and precise strategy of teams to help pace a race and improve the odds of one person on your team who has held back, conserving energy, to sprint at the end. Even though I have owned several bicycles from the early years of “sissy” bars and banana seats (showing my age) to my most recent mountain bike, this whole sport was way out of my league. Sure, I could have put on all the right equipment and grabbed the nearest bike…but, I would have just been in the way after just the first lap as I awkwardly made my way around the course. It would have been entertaining watching me  try to make all of the equipment, intended to make one better and faster, just work together in unison. Over the past several weeks as a church we have been studying the Armor of God reference from the book of Ephesians….
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Our two special needs kids have Wrecked our lives

Did the headline grab your attention? Good, it was meant to, but not in the way you may be thinking. Sure, I could go down the path of “why me?” and all the things we miss out on as individuals and as a family because of having two children/siblings with special needs. There are missed opportunities, missed friendships, strained family relationships, misunderstandings of our motives or reasons by not being able to accept invitations to do things, why we have germ phobia…all part of the sacrifices we have to make with having special needs kids in our family. I don’t want to follow that path…we as a family have been Wrecked in a different sense of the word. We have been Wrecked in a beautiful, remarkable way. I have been reviewing and have been part of a team that is launching a new book that is about to be released next month…a must read. The book is WRECKED: When a Broken World Slams Into Your Comfortable Life, by author, blogger and speaker Jeff Goins (download the first section of the book for free using this link). Wrecked is a journey of unbecoming, covering the stories of people whose lives have been turned upside-down in the best way possible—and what they decided to do afterwards. Jeff explains in the following description of the book: “We all want to know why were put on this earth, why we were created. But the answer may, in fact, shock you. Whether it’s a trip to the developing world, a brush with poverty,…
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(Whistle blown) Flagrant use of the “R” word…

I work hard at being a person who is slow to anger and tolerant of those around me who may be having a not so pleasant day. I am usually not one to rant about something…but, this past week something happened that I thought I could not ignore. I thought I would share my experience with this audience as a “public service” announcement in sensitivity training. As I was running errands with my nearly 3-year-old daughter we were somewhere between the Goodwill store and the grocery store where I was stopped at a stop light. I was deep in thought about the day, more specifically about how our newborn was doing in the NICU and the rays of hope we were seeing and hearing about the prospect of Isaac coming home after his 8 week stay. These thoughts were intermingled with the contentment that comes when we go through trials. Yes, I said it, contentment. Contentment in knowing that it is the trials and the rough times in our lives that bring the little things in life to the forefront. Like the blessings and new life that can only come when a forest is overrun by fire, it is good and healthy to go through tough times. You may be thinking that this is a lot to be running through your head during 30 second red light. Apparently it was for me too as I apparently had a lapse in the time the green light came on and the time my right…
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Creativity…Are you learning how to say something?

Matthew has been exploring his creative side for the past several weeks with his ipad that was donated to him for Christmas. Along with the many apps that are available nowadays for kids with learning disabilities, the ipad features the ability to take pictures. Matthew uses the camera to capture a mental list of photos he has created in his head. We do not know what this list is and he can be seen running after his ipad when something comes along that is picture worthy on his list. One morning Matthew was parked in the hallway of our home with his ipad in camera mode. This position is not foreign to us and neither was the ipad so I did not think much more about the scenario…until I heard the scream coming from the bathroom. Next on Matthew’s picture list was mom getting out of the shower! He was in waiting like a seasoned paparazzi for the perfect shot. He went away frustrated. The rotation went like this: curtain closed, ipad on the ground…sound of curtain opening, ipad at the ready for the shot…ipad noticed, scream, shower curtain closed…repeated several times until dad stepped in and distracted Matthew enough for mom to get to the bedroom. His creativity was further explored a few days later as he dropped his pants in the middle of the living room floor and proceeded to step over and hover above the ipad…thankfully he still had a diaper on! He is still seeking that picture and tries every few days or so to cross that one from…
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