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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

CHARGE Syndrome

Making yourself Grumpy?

As we were all hanging out at home one day this week (a rare occurrence lately in our house) we heard a familiar sound coming from Matthew. Having a child who is non-verbal can be challenging but we have learned to identify his sounds almost as if they were an assigned ringtone or notification tone on our phone. He was annoyed…in most cases it means that Sarah Anne has done something or taken something or is just generally in his peripheral space. Theresa called out the accompanying phrase “what’s wrong with Matt?” Usually the phrase is followed by a confession or an observation. This time the response made us all laugh. She responded with: “I didn’t do anything…Matthew is making himself grumpy.” We laughed at yet another Sarah Anne original phrase and went on with our day. It wasn’t until later in the day that the innocence of that phrase hit me hard. “The pupil dilates in darkness and in the end finds light, just as the soul dilates in misfortune and in the end finds God” Victor Hugo – Les Miserables As I was driving I began to recall moments that God plants in and around the trials we were going through. Funny how we tend to focus our entire energy on the trials and miss the small rays of sunshine…God’s reminders that He is in silently there, silently giving us everything we need. One such reminder was during an emergency trip across the state to replace a leaking…
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Know where you are…

June has been a busy month! I was able to go on my annual fishing trip with my good friend Brian, we celebrated Isaac’s first birthday, we celebrated Hannah’s high school graduation and celebrated Matthew’s twelfth birthday (we will skip that I had a birthday earlier in the month). I appreciate the break in writing but always eager to get back in the routine of sharing our lives with all of you. You inspire us as much as we inspire you! The place where I take my annual retreat and fishing trip is a beautiful 7,000 acre piece of property in Northern lower Michigan. Several lakes and nearly 60 miles of two-track roads criss-cross the land. One afternoon while it was rainy and windy some of decided to search out one of the smaller lakes that are only accessible by getting close via one of the roads and then trekking through the woods. We found a lake and got lost in the process. Getting lost only burned an extra hour but we did see part of the property that we have never seen before. It was an adventure with no map to go by, but we also knew that there are borders on the property and even on 7,000 acres one could not stay lost for long. A quote I read recently made me think of this time in the woods…and other times when I have been completely lost while traveling. “The best map in the world doesn’t do you any good if…
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Can Brokeness be a Gift?

A week ago we were preparing and packing for our trip to Mott’s Children’s Hospital for Isaac’s stomach surgery. Today, we are all back home and very grateful for how things have turned out. Very nice, simple bookends wouldn’t you say? The rest of the story is how God works in and through us while we go through the dark moments of doubt, worry, anxiety, lack of sleep, driving back-and-forth across the state to attend to family and work needs and setbacks…just when you think things are progressing. Most of all, the pain of watching your precious little one go through pain and wanting to take it away, even for just a few hours. I was looking back through the week this morning as I sat down to write a few words. What I could not get out of my head was a post I wrote exactly a year ago as we were fumbling through the first few weeks of Isaac’s life. I wrote a post about a few quotes in a book by Sheila Walsh called God Loves Broken People…here is an excerpt from that post…along with the quotes. I felt that it was worth repeating: “I told her that I still take medication, and every morning I take that little pill with a prayer of thanksgiving that God made a way for those of us who suffer like this on such a broken planet. And, I told her that in the darkest moment of my life, I discovered that…
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His name is Faithful and True…

Planning, scheduling caregivers, paying bills, packing, more packing…and somehwere between all of that, some nervous anticipation and worry. No, it’s not a vacation… We will be leaving in the wee hours of Monday morning (May 13) to arrive for Isaac’s scheduled surgery at 7:30 a.m. Ugh, that means a 3:00 a.m. wake up time for travel and pre-op! We are asking for you, our massive prayer team partners, to once again storm the gates of heaven with your prayer for this delicate surgery. Matthew had this same surgery, a nissen fundoplication, which is a procedure on the stomach that will eliminate the ability to burp, throw up and reflux. Matthew had this surgery at just a few months old. With Isaac we have had to wait until his esophagus was completely healed from his surgery at just a few days old and did not need constant dialting (stretching) to stay open. His small stomach was also something that played into the decision to delay this complicated prodedure. Today has been an emotional and joy filled day. We spent some time this morning with the elders of our church as they anointed and prayed with Isaac before we leave for his surgery. They prayed not only for Isaac but for us as a family. Today happens to be Mother’s day…Theresa was overcome with emotion as she held Isaac tight, recalling that just a year ago she was not even able to hold him on this same day. Another memory came flooding back as we sang 10,000 Reasons (Bless…
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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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