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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tag Archive: CHARGE Syndrome

A nearly five year prayer answered…

Yup, it has a been a long time since we have given an update. In the brief version, we are all doing well and are in a period of life with our family that best be described as “a good place”, at least as it pertains to health and development. We want to wish this boy a Happy 5th Birthday! Not only is it Isaac’s birthday but he has some great news to announce…he will be starting school this summer and fall! We are currently working out all of the details but he will be attending a “regular” school in a special needs classroom with daily inclusion in a “regular” kindergarten classroom. He had a site visit and he absolutely loved it! Isaac loves people and loved having all of the activity around…especially when he visited the playground. More details will come as he begins this new journey. Another brief thing about Isaac lately…he has taken a liking to our outside deck and furniture. With the nice weather lately our deck slider door will occasionally be left slightly open with both Sarah Anne and Matthew coming and going. Isaac can sense a break in the force and has been found a few times outside on the deck sitting in a chair watching his Kindle. The boy loves the outdoors! Matthew is doing great in his school setting as well. We just completed a conference meeting with his teachers, aides and his one-on-one Intervener. It was hilarious to hear about Matthew’s…
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I will be here…

We keep hearing…”What is going on with the Troupe’s?”. I have taken a break from blogging as we had a very busy Fall and Holiday season. There have been some monumental changes in both Isaac and Matthew, as well as the rest of the family. We have just been enjoying a season of what Theresa has referred to as “a good place right now”, at least as things are concerned with Matthew’s development and Isaac’s health. I will try to do that in the next several weeks in blog form. But first, I want to share with you an historic occasion for me and Theresa Last October Theresa and I celebrated our 25th wedding anniversary by taking a small vacation to South Carolina. We had a very relaxing time and were able to spend quality alone time together on a few carriage rides, plantation tours, a dinner cruise in the Charleston Harbor along with some other things. This was actually a monumental step for us. It has been just over 14 years that Theresa and I have spent a night (not to mention five!) away alone without at least one of our kids. The last time we have done this was when Matthew was one year old and we went on a staff retreat outing with my fellow church employees. It took months of planning and a coordinated effort of our nursing agency, caregivers our church family and a huge sacrifice by Hannah and Megan…who held the house and schedule together while we…
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A season of suffering…

I don’t consider myself a master gardener by any means. I do, however, enjoy cultivating, planting, weeding (to some extent) and eating fresh vegetables from our small garden. I think my draw to gardening comes from fond memories as a kid when we would plant nearly an acre of vegetables and spend the better part of the summer canning, freezing and preserving all kinds of things for the coming non growing season. We would can tomatoes, make tomato juice, make pickles of all varieties, freeze beans, corn, carrots, peppers, make grape jelly, raspberry and strawberry jam, and package onions and potatoes for long term storage in our basement. I remember it being hard work and I remember a hot and humid kitchen as the water bath canning pot was almost always boiling. Weeding was not only a chore but also a punishment. I was always fascinated by melted paraffin wax that was poured over the top of the jelly jars…we would always sneak a finger in the wax. As I was doing some yard work this past week I came across this lone tomato plant that had planted itself in our lava rock filled landscaping. It even has a couple of tomatoes on it! I looked down into the rocks and found that it was growing in the rocks, above the landscaping fabric. What are the odds that this plant even sprouted…not to mention that it is thriving and even producing fruit? No soil prep, no fertilizer, no special staking,…
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It’s your move…what will be your response?

A quick note before I dive into the latest blog post. Our book, Strength to Care: Reflections for Parents of Children with Complex Medical and Special Needs is available for free on Amazon in the Kindle version on May 16 & 17. Please share this blog with anyone who you think may benefit from this collection of blog posts that deal with a hospital stay, a surgery or just plain old life is hard right now. It’s your move…what will be your response? A trusted mentor friend of mine, Kent Julian, who has spent his life teaching, writing and speaking often uses an equation to get a point across. That equation is E+R=O, or the Events plus the Response will equal the Outcome. In a recent podcast (Live it Forward podcast) he took time to lay out how this equation played out in his own life as he struggled with some learning challenges early on in school and into college. It reminded me of why I write and speak often about our experiences in this special needs journey with our family. Why does the Troupe family lay it all “out there” by sharing our experiences, both the good and the bad? I hope to answer this question and maybe inspire you to change your conditioned responses to events to change the outcomes in your lives. I have been blogging now for seven years sharing our ups and downs, joys and sorrows as we have raised one, now two boys with…
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The Heart of Sibling of a Special Needs Child

Before I get into this week’s blog I would like to ask for a special time of prayer over the next few weeks. Isaac is scheduled for a major surgery on Monday, April 11 at Cincinnati’s Children’s Hospital. You can read about the specifics if you go to blog post prior to this one. The surgery is a long and detailed one and he will be in the hospital for about 2 weeks. Please pray for a successful surgery, for healing and for all the details of a family of seven being separated for this time period. To keep informed of Isaac’s progress you may subscribe to this blog in the column to the right. You may share this prayer request by clicking on an appropriate link at the end of this post. Thank you for being a part of our journey. The Heart of Sibling of a Special Needs Child As a parent of a special needs or medically complex child do you ever wonder about how their siblings are doing or cope with it? When we were thrust into this arrangement nearly 15 years ago without warning we were quite concerned as Matthew spent his first month of life in the hospital. And, now that Isaac is nearly 4 years old we have been taken to yet another level of focus and care, we have relaxed. Things do work out. Not perfectly, but they do work out…for the better. Yes, it can be hard. Plans get derailed constantly…
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Our journey gets longer…

February 2016 So much to write and think about after our week long trip to the CHARGE Clinic at Cincinnati Children’s Hospital for evaluations of both Isaac and Matthew. Some of the things we were looking at were the same for both boys, but there was a more substantial look at Isaac and his issues with his stomach, esophagus and airway. First of all…the trip was well worth the drive, the logistics and planning for a family of seven to travel and stay for a blended “vacation” and hospital visit were tricky. We say “vacation” because were excited to find out that through the hospital we could get both a discounted hotel room and free tickets to many local attractions. Intertwined around day long appointments we were able to visit the zoo, the museum center, the aquarium and the Creation Museum. We know that for the last year or so we have been living somewhat in a state of denial with Isaac. He has been relatively healthy, growing and thriving in development and mobility. The denial comes in what is underlying in his throat, lungs and belly. We know that there are problems, but we didn’t feel the urgency to do any intervention about it. He (and we) have been through so much we needed a break and a time to figure out a game plan for the future. The following is the short (and long) of what we experienced and learned from the team of specialists, nurses and doctors…
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Sometimes it just takes time…

Yes, it has been a long break from blogging…life is busy and we have had a few ups and downs to deal with. Thank you for continuing to follow our journey and for your support of prayer and encouragement. If you would take some time to look over the page I have added a few new features. There is a “Kevin Recommends” tab. So many of you inquire about books and products I talk about and show pictures of. There are categories like safety and security items, therapy items as well as books…take a look and let me know if you have any other recommendations I could add. We all have to be creative and I know you have ideas as well that could benefit another family. It is set up as an e-store so there are clickable links that will allow you to complete your purchase through Amazon. I would love to answer any questions about any of the items…they are tried and true in the Troupe house! Theresa has also updated the Prayer List page. Some information there on what we have been up to and what is coming in the next few months. Lots of prayer needed! Sometimes it just takes time… We have some exciting news to share about Matthew! After a 7 year break from a center based school setting, Matthew re-started school after the winter holiday break. The preceding sentence are the book covers of an evolving story of faith, trust and doing what we…
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Surviving the “normal” in special needs parenting

Several conversations between my wife and myself and with other families who are caregivers of medically fragile children/special needs lately have been over the times in our lives that are referred to as “normal”. The consensus is that we tend to dread them. It sounds quite opposite of what one would expect doesn’t it? I hope to shed some light on this and maybe it will speak to you and your family as well. As parents of a medically fragile child…actually, in our case, two with medical issues/special needs we become quite accustomed to the crisis times in our lives. We act with laser focus, God seems right at hand with an army of prayer warriors around us, and our support systems of family and friends kick in full force. Our vision becomes like a tunnel and the “normal” things around us seem to disappear. We are a witness to miracles and God’s healing power as we have spent time in a darkened hospital room lit only by the towers of pumps and monitors and the computer and phone screens that send encouraging words and prayer as we wait out the ups and downs of another healing. But, when we hit the “normal” patches with the common storms of life we seem to struggle the most. We can become overwhelmed with the “what could have happened” scenarios. We stress over if the other siblings will survive taking a back seat to the crisis. We begin our routines of constant doctor and therapy appointments…
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A Weekend Oasis…every two years

Where would you go to find kids randomly laying on the floor, suction machines and vents whirring in the distance, chewy tubes in all colors, feeding tubes and pumps, walkers, hearing aids, interpreters and every imaginable kind of wheelchair…a hospital? No, a weekend oasis where all of the above and more is the norm. Welcome to the 12th Bi-Annual International CHARGE Syndrome Conference. 1,200 people consisting of individuals with CHARGE, families, caregivers and professionals spending 4 days of fun, education and relaxation. A time to reconnect with old friends, finally meet face-to-face with “cyber” friends and a time to make new friends, all while learning more about this rare genetic disorder that has so profoundly impacted all of our lives. The CHARGE Conference is not about professionals talking AT you…it is about professionals who care so deeply that many of them have devoted their entire careers to study, observe and wrap their entire lives around our kids, teens and grown-ups who have been impacted by CHARGE Syndrome. It is not uncommon to see these professionals rolling on the floor with our kids, eating meals and spending most, if not all of their free time at Conference with the families, collecting data for research from their hotel rooms and answering questions about “how-to’s” and “what-to’s” pertaining to our kids into the wee hours of the mornings. Speaking as a parent, the time spent at Conference is a brief moment in our lives where we don’t have to explain, make excuses or apologize on behalf…
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Strength to Care

As the calendar is quickly approaching June I am reminding myself of my goal I made as last year came to an end. I have always considered this blog to be a means of putting my thoughts down in written form to “someday” write a book about our experiences of raising one, now two kids with a complex genetic disorder called CHARGE Syndrome. In fact, if you have ever read the sidebar column to the right it has always been there in the little bio of the Troupe family. I had always thought I would call my one book “Lessons from Matthew”. Now, almost five years later, we have a bigger story to tell than just about Matthew. I remember talking with my now former neighbor, who has his own ministry through music and as a radio host, when Isaac was born his words were so true; “Kevin, you now have another chapter and perhaps another book to write” as we talked about embarking on our new journey with Isaac. Many have asked about why I write about the journey of life in the Troupe house. I have always answered that it is just another creative outlet for me to express myself. As time has passed and our journey has reached across not only our own area but now across the continents I found assurance that my writing and our story brings hope and strength to others. It has become even more clearer after reading the pages of another author who…
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