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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Latest Posts

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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A wish come true…

The blog this week will consist of a pictorial journey of Matthew’s Make-a-Wish journey. Theresa did a great job putting together this scrapbook! With this brief introduction, I will  post the scrapbook in the following pictures. If you have trouble reading the journaling, click on the picture “page” to make it bigger, then use the back arrow on your browser to go back to the main page. I will wrap it up at the end…   We are grateful for Make-a-Wish, for the volunteers, partners and for those who make Make-a-Wish a part of their giving. We cannot express in words the smiles and happy tears on our end that were a part of that day. We have never seen so much anticipation and smiles from Matthew. After the party and dedication was over, Matthew took time to do his customary “lick everything” and claim it as his own. Next week I will return with another “lesson”…this week we will enjoy our Make-a-Wish celebration with you, our family. Blessings, The Troupe Family   Share This:

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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Using a pivot point…

How good are you at handling change? Do you form plan B situations? Plan C? One thing the Troupe’s have become good at is reacting to things that come our way. Our lives have become quite scripted since Isaac joined us almost 3 years ago. We have to set a nursing care schedule a month and a half ahead. We plan for work schedules, activities, events and even for socializing. Yes, it is rigid but very necessary for us to get sleep and to be able to still be a family and do regular family things. Even the best formulated plans will develop roadblocks and bumps along the way. The challenge is how we deal with a sudden change. It seems as though God is always at work allowing certain bumps and roadblocks in our paths. These are not there to intentionally frustrate us…I believe they are there to help steer us in a direction that will be better for us, even if we do not see the benefit at the time. Commit to the Lord whatever you do, and he will establish your plans. In Their hearts humans plan their course, but the Lord establishes their steps. Proverbs 16:3,9 (NIV) Over the years we have had many chances to change the course of what we were doing. Many different trips to the Emergency room. Surgeries or procedures that didn’t go as expected and resulted in a lengthy hospital stay. In hindsight we have always been able to see the…
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Would our life be different without “special” needs?

Notice the toys all around...BOX!

I heard a question this past week that has made me look within several times and ponder the same question as it relates to my life. The question was: “if your life didn’t include (insert trauma, life changing event, illness, etc.) how would you think your life would be different”? For me and my family it made me ask myself the question “if we didn’t have Matthew or Isaac or both, how would our life be different”? This brought up a great conversation between Theresa and me as I asked her the same question. We both had the same answer. We both have never really thought of how it would be different. We have never really dwelled on what could have been. We both agreed though that we would not be the people we are today without the experiences we have had, good or bad over the past 14 years since Matthew was born. We both agreed that our life looked quite different from the “norm” when we had just four kids. With the addition of Isaac…it is now on a whole new level of different. Before, we dealt early on with some medical, mostly though with Matthew it has been behavior issues and a feeling of vigilant guarding for his safety. Isaac has added a whole new level with acute medical needs. I guess you would say we are well rounded now! In preparing some text for my upcoming book for editing I was reviewing some past posts. I…
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