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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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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  

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?

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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Does God give us more than we can handle…

One of the most often used phrases spoken to people who are in the middle of a crisis, struggle or burden…”God will never give us more than we can handle”. Usually followed by…”You must be really strong”. Those of us who are in the special needs community are often handed this one too “You must be really special if God has given you a such a special one to care for”. These comments are well intended and we do take them as a compliment even though sometimes they can be irritating. It guess it is better than being told “you had it coming” or “you deserved it”. Actually, in not so many words from some well-meaning people we have been questioned with why we had more kids after Matthew was born. These thoughts entered our world even more when Isaac was born…as if we were playing some kind of lottery, balancing between healthy, no problem children and CHARGE boys. By the way, we had no better chance to have two CHARGE Syndrome children than any other father and mother the first or second time. Is it really more than we can handle?….Yes, if we choose to handle it on our own. The reference to God not giving us more than we can handle comes from 1 Corinthians 10:13: No temptation has over taken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a…
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Heart Babies…Congenital Heart Defect Awareness Month

February is Congenital Heart Defect Awareness Month so I thought we would revisit this post from 2011. Almost exactly 4 years ago when Matthew had a cleft repair done on a leaking mitral valve. I wrote the following post the night after this major surgery…a little more relieved after the restless night before. This feels so long ago but still stirs emotions of wondering if Matthew would even survive the surgery. Would you take some time this week to pray for all of those families who have or will face major heart surgeries. Ours, as many have happy endings…others face the pain everyday of a child that never made it to a life saving surgery or healing. From March 4, 2011: As I sit next to Matthew’s bed, experiencing the sounds of a pediatric cardiac intensive care unit while Saturday becomes Sunday, I am overwhelmed with the goodness and faithfulness of a God who keeps his word. I am humbled by the overwhelming response of family and friends who have spread our gift of Matthew around the globe through social media and email to create an incredible chain of prayer warriors. Theresa and I are witness to the fact that prayer is powerful. We both have had an undeniable trust and peace as we go through this, yet another, opportunity to show God’s abundant power. As one can imagine, on the eve of Matthew’s surgery I was a little restless. Something about this night was different. I can count on one…
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Do we know His voice?

It never gets easy. Isaac is scheduled for a third cleft repair surgery this week, one that will focus on his lip and nose, with a slight touch-up on his palate. It will never get easy to plant that last kiss and that last squeeze of the hand as the anesthesiologist team wheels them down the hall. Speaking of wheels, check out Isaac’s new walker! He loves his new freedom! As we prepare for another surgery you would think that our nearly 40, yes 40 combined surgeries/procedures between Matthew and Isaac we would be on cruise control…but, they never get easier…in fact, they get harder. Harder because as they get older they also get wiser and it hurts more. Hurts them more and hurts us more as we sign the next consent form. Although we enter this new experience with a healthy respect and aware that there are risks we also go with a firm belief that this is all in God’s hands. You see, we are in tune with a certain voice. A voice that leads us through tough valleys AND beside restful waters. It is not easy to be tuned to that voice. There are much louder, much fancier and even sometimes seemingly more logical voices to listen to. We are surrounded by voices that pull us in many directions…unfortunately in the direction of stress, being anxious, fearful and not at peace. My sheep hear my voice and I know them, and they follow Me. John 10:27 I am sure it is no coincidence that…
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Hope During Heartache…

This week I have the pleasure to announce a guest post for our Lessons from Matthew & Isaac. I met Cheri at a writers conference we both attended in Nashville about 3 years ago. Our ministries overlap in so many ways. She writes from her heart and the desire to send hope and healing to families who have suffered loss. In her latest book, Hope During Heartache, she shares the stories of families who have dealt with the pain and emotional healing from Infertility, Miscarriage, Stillbirth, or Death of a Child. I will hand over the keyboard to Cheri…see you again at the end of the post… Hope During Heartache Infertility…miscarriage…stillbirth…or death of a child. I’m a member of an exclusive group. I never wanted to join this club. When I was a little girl dreaming of my happily-ever-after, this particular sorority was never thought of as a possibility. My orientation into this club began with a missed period in November 2006. I was happily married with two children. Even though this pregnancy was God planned, not we planned, my whole body reacted with sheer joy at the thought of another child from Him to raise, teach, and love. Before even having a chance to tell my husband the good news, I already had our child through his fifth year of life – at holidays, birthday parties, playing in the summertime – a real part of our family. Miscarriage was something I thought happened to someone else, not me.  However,…
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Our magic clothes dryer…

The secret is out. The Troupe’s have a magic clothes dryer in our laundry room. It is a normal one, just like the one you may have but it has, according the Matthew, one feature yours may not. Ours makes and is the source of all new pajamas. He checks it several times a day just to see what may have appeared since the last time he checked…ten minutes ago. You see, we have a rule in the Troupe house: All clothes purchased or donated new or used have to be washed first. Matthew figured out a long time ago as his obsession with clothes and fabric grew into this pajama phase…if you tear up your favorite pair, no problem…there will always be a new pair “magically” being created in the dryer. When returning home from an outing and shedding the mandatory street clothes…check the dryer. Wake up in the morning…check the dryer. Diaper change…check the dryer. So our lives go at home. All the more reason we are so thankful for our new house with main floor laundry. Of course, we all know pajamas just don’t appear out of nowhere, right? One of us has to always scour garage sales, second-hand and thrift stores to score pajamas (he is especially fond of the footed blanket sleepers). On a side note, big boys are not especially fond of the footed pajamas, hence Matthew is primarily decked out in pink or purple ones adorned with princesses, puppies, hearts or kitty’s. Matthew doesn’t care, he will…
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