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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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Where is my phone…!?

Around the Troupe house we have a warped sense of humor. We have to…if we don’t laugh at the things we go through we would be crying. Both are healthy, but I prefer to laugh. I have mentioned many times before Matthew’s obsession with having a diaper tab in his hand. He will twiddle with it between his fingers constantly. When he wears one out he will toss that one aside and begin with another. Occasionally he will misplace the one he is currently using before he is done with it. He will whirl around in a frantic state until the lost has been found. What makes for good entertainment is when it becomes attached to something out of his sight, like maybe the back of his head as the picture shows. We allowed him to “panic” for a few minutes, while we laughed, and then we gave it back. It’s all grins and giggles…until it happens to you, or me in this case. I was in the middle of a productive morning when I moved into the next project of changing rear brake pads on one of the cars. I couldn’t budge one of the wheels if my life depended on it. At a suggestion of a friend I loosened the lug nuts slightly and drove around my neighborhood at a slow pace hoping to jar it loose. When I returned home I backed the car in the driveway and reached for my phone. You know, that thing that is literally attached to our hips as many…
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They have a voice!

This year marks a full three years of blogging in Lessons from Matthew…now Lessons from Matthew & Isaac! Theresa has been one of my best editors and constructive critic of what I write. This week I am handing over the keys so-to-speak. I am letting Theresa take over the blog and get a glimpse of our lives from her perspective. Also, a little treat in the form of hearing from Isaac as well…I feel like I did when I let Hannah drive off in my car by herself for the first time… The past couple of weeks has been very challenging for our family. We all shared a “cold”. Sarah Anne and Isaac were the most severely affected and Isaac ended up in the hospital for another week stay. If you have experienced a loved one in the hospital you know that this time is very trying on the whole family… financially, emotionally and physically. Hannah and Megan stepped up in amazing fashion, again. They helped maintain the household which included caring for Matthew and Sarah Anne the majority of the time…not easy with an already cling-to-mommy girl was not feeling well with a double ear infection. Kevin did not return home during that time. He would go straight from work to the hospital back to work. I was at the hospital when Kevin was at work then rushed home to take over for the girls. He and I would literally trade spots in the hospital turn around. Needless to say for…
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What dog are you feeding…?

A constant question we are asked is “how are you guys doing?” I know the question is almost always referring to either Isaac and/or Matthew. There are varying degrees in which we answer that question. Isaac’s medical and Matthew’s “creativeness” would bog anyone down if we went in to all the details. Most of the time we keep it to the short version of good or we need prayer for a specific. There a few people who are in our tighter circle that the question is more directed to the rest of us…and uncomfortably, toward Theresa and me. I say uncomfortable because we are not always doing “fine”. It is a hard thing to admit that we don’t always have it all together. For those not close to having to directly care for a special needs child, a sibling or perhaps an ailing family member or parent, there is a common term called caregiver fatigue. Yep, we have it…a lot. Caregiver fatigue can consist of several things and can be quite varied in intensity. The best way to describe it is the feeling of being trapped. Theresa describes it as a feeling that everything ultimately defaults to her…medications, appointments, therapies, consultations, nursing schedules, etc., no matter how much we help with these things, she feels and absorbs the brunt of what doesn’t get done. I have the same feelings about being the primary provider for our family…neither one is more important (or easier) than the other. That is where the trouble can begin. I am going to…
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“There’s a hole in his lip…?”

Before I begin the blog this week I want to thank all of you who recommended Lessons from Matthew & Isaac for the About.com 2013 Readers Choice Awards for Best Parenting Blog. You now have until March 19 to vote Lessons from Matthew & Isaac alongside four other wonderful blogs. You may vote once per day. After seeing the results from the first week it appears that I may be a small fish in a very big pond! I am not as concerned about the votes as I am bringing awareness to CHARGE Syndrome and praise to the one who deserves it! May God continue to be glorified. Vote early and vote often! The link appears just to the right of this post in the right-hand column. We had a very tender moment this week that reminded us that our entire life, everything we experience and our subsequent response is entirely influenced by our perspective. What we see with eyes is not always how we interpret was is before us. Very early on as we embraced the fact that Isaac was likely going to be as challenging if not more than Matthew, we tried to prepare Sarah Anne for the birth of Isaac and how he may look a little different from her little babies. We explained what a cleft was and showed her pictures and shared that Isaac may have to spend some time in the hospital after he was born. None of that really mattered as Isaac joined us almost 10 months ago. To her…
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Life is sacred…where are your anchor points?

Yes, there will be storms in our lives. Some are small, some are so strong they are epic and life changing. I just finished a book that is a re-release by author John Maxwell, Six Hours One Friday: Living in the Power of the Cross. I liked how he used the following excerpt at the end of a personal story about the time he and a friend bought a boat on a whim and shortly after had to protect that boat from an oncoming hurricane…with no experience, guidance or a plan. It was the sage advice from a seasoned sailor that gave them crucial instructions about the important use of anchor points…deep anchor points. He associated the importance of having such anchor points in our own lives: Six hours. One Friday. Those six hours were no normal six hours. They were the most critical hours in history. For during those six hours on that Friday, God embedded in the earth three anchor points sturdy enough to withstand any hurricane. Anchor point #1 – My life is not futile. This rock secures the hull of your heart. Its sole function is to give you something which you can grip when facing the surging tides of futility and relativism. It’s a firm grasp on the conviction that there is truth. Someone is in control and you have a purpose. Anchor point #2 – My failures are not fatal. It’s not that he loves what you did, but he loves who you are. You are his. The one…
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God is on the phone…

A reminder…last one! If you happen to be in the Grand Rapids, Michigan area I will be speaking at Calvary Church on Wednesday night, January 16, 2013 at 7:00 P.M. I will be sharing about our family and the joys and sorrows of raising one, now two children with special needs…here is a link for further information: Kevin speaking at Calvary Church Have you ever had one of those moments that God is so present you could touch him? We have had many of those over the years, especially in the past one. We had one this week that was like a 2 x 4 to head with the message of “I am in control here, I’ve got this!” It was in the form of a phone call early on Thursday morning…It very well could have been God, or an angel. In reality it was a surgeon from U of M. We have this verse on the highest part of our family room wall. A Christmas gift from Hannah to mom. It is a great verse for our family: “For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you. Plans to give you Hope and a Future.”  Jeremiah 29:11 Theresa is probably the best advocate for care and support for our family I could ever imagine or even come close to duplicating. She has a gift for negotiating through the system of medical care for each of us…especially the more difficult cases…
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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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