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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tag Archive: Leaking Mitral Valve Repair

From the inside out…

From the inside out…this saying could have many different meanings attached to it. The band Hillsong United on the Live In Miami (2CD/DVD) album has a song by this title. This popular worship song is sung in churches small and large all around the word. We have been living this song and the lyrics over the past six, going on seven weeks as we attend to and sit with our new little boy. Matthew even gave us a trial run on this subject just a few months ago as he fulfilled his desire to go from the inside of his room to the outside. Rather than use his doorknob, the easier solution, he had to find a more challenging way to do the mundane task of turning a knob and pulling a door. He picked away at the bottom corner of the door until he found a weak spot…from there it was all downhill. Piece by piece he picked away at it producing small, medium and large portions that were thrown to the side as he neared his goal. This was all done in the wee hours of the morning while the rest of us were sleeping. When we finally did hear him he was well on his way to getting to the second layer of the hollow core door…the picture shows it all. Along with his peek-a-boo picture of innocence from the hallway side. There are different views when you look from the inside out and then from the outside in. We have been stuck in this…
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I got nothing I asked for but everything I had hoped for…

As the calendar turns to June, our stay in the NICU with Isaac reaches the 4 week mark. We wish we had glorious news to share and that Isaac will be coming home soon…but, we wait. At first we were counting days…now we are counting weeks and continue to pray that we will not be referring to months as our stay creeps on. As people ask the question of “how is Isaac”? We now find ourselves replying with the same phrase over and over…”the same”. I will come back to the details near the end of this post. For those of us who pray, we quickly realize that prayer is not just a request list of things we need or want…or think we need and want. We have spent many hours and days, along with you praying for our little Issac…praying for what we think we need and want…I was shown a little perspective in a book I finished this past week titled: The Book of Man: Readings on the Path to Manhood – William J. Bennett. A great book for fathers and mentors to boys and young men on the lives of famous people and not so famous people about what it means to be a real man. A real man of integrity, faith and one who leaves a legacy of worth behind when he is gone from this world. I was taken aback when I read this prayer included among the stories that was hand scribbled and found in a pocket…
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“Mr. Troupe…You are being served”

Being served…brings up all kinds of wild thoughts. Could it mean legal documents filled with Information that is about to change you life forever? Makes your heart start to race, brings a dry feeling to the mouth and a shortness of breath just thinking about it. Thankfully I have never had this particular scene happen to me. But, I did have the same kind of reaction and symptoms when I was told by my co-workers and other volunteers from the church I have the privilege to work with that we were going to be “served”, in the form of a work day at our home. A completion of the mommy-is-nesting list of things that was crumpled up and tossed aside when Isaac decided it was time to join us a full six weeks before he was supposed to. A week ago, nearly 40 people arrived in cars, vans, trucks and trailers to spread 5 yards of shredded bark, 3 yards of crushed stone, till and plant our summer vegetable garden, weed and prune bushes, clear brush, define bark beds, edge sidewalks, power wash furniture and play toys, stain the deck and stairs, wash windows, clean our hard floors, finish a painting project and hang a couple of new light fixtures. We were blessed beyond words. We had tears streaming down our faces as we drove away to be with Isaac and his upcoming procedure that day. We had to surrender and allow people to do this for us…not for us, but for them. The most…
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Tragedy, then trust…Don’t be afraid

As Jairus and Jesus were going to Jairus’s home ” a messeger arrived from the home of Jairus, the leader of the synagogue. He told him, ‘your daughter is dead. There’s no use troubling the Teacher now.’ But when Jesus heard what had happened, he said to Jairus, ‘Don’t be afraid, Just have faith, and she will be healed’” (Luke 8:49-50 NLT). Jairus was whipsawed between the contrasting messages. The first, from the servants: “Your daughter is dead.” the second, from Jesus: “Don’t be afraid.” Horror called from one side. Hope compelled from the other. Tragedy, then trust. Jairus heard two voices and had to choose which one he would heed. Don’t we all? Fearless: Imagine Your Life Without Fear Max Lucado I couldn’t agree more with Max Lucado in this snapshot of trust. “Jairus was whipsawed between the two contrasting messages.” A great description of  the events of two weeks ago today…in the early morning hours of May 6, we “whipsawed” back and forth between the messages like “you are having a baby today!”, “airlift to Ann Arbor, mom and baby or just baby?”, “will there be an airway to work with?”, “surgery may be necessary immediately”…all of these contrasted with the same calming words that Jesus spoke to Jairus “Don’t be afraid”. All the plans we were making, all of the minute details of what June 8 would look like and the following weeks of care, family planning, dog sitting, school and other commitments being attended to. Instead, we were thrust into this situation of complete reliance on God, on those…
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Facing the storm…sunshine above the clouds

The disciples fought the storm for nine cold, skin drenching hours. And about 4:00 a.m. the unspeakable happened. They spotted someone coming on the water. “‘A ghost!’ they said, crying out in terror” (v.26 MSG). They didn’t expect Jesus to come to them this way. Neither do we. We expect him to come in the form of peaceful hymns or Easter Sundays or quiet retreats. We expect to find Jesus in morning devotionals, church suppers, and meditation. We never expect to see him in a bear market, pink slip, lawsuit, foreclosure, or war. We never expect to see him in a storm. But it is in storms that he does his finest work, for it is in storms that he has our keenest attention. Fearless: Imagine Your Life Without Fear Max Lucado The storm…If you can picture the weather people who are laden down in all-weather gear, waves crashing in the background – barely able to stand with the whipping wind making the traffic signs wave back and forth to each other…yeah, that is kind of where we find ourselves this past week. It has been scary and wonderful all at the same time. It isn’t unlike marveling at the wonder of nature as a thunderstorm rolls in, wreaks it havoc, moves on and leaves a beautiful sunset behind. We have had days end with a beautiful sunset as well as days end with thunder still in the distance…hoping, praying the phone doesn’t ring with the delivery of bad news, another flash of…
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God lives very close to the floor…

*This post was published on May 11…If you are looking for the most current update please follow this link   Amplitude…well blended and balanced “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 God lives very close to the floor, very near to those who are broken.”  Sheila Walsh, God Loves Broken People While hanging in the abyss of time in a hospital NICU watching Isaac heal I have had the time to finish a few books I have been in the middle of. The quote above is from God Loves Broken People: And Those Who Pretend They’re Not by Sheila Walsh. This book is a great read and has been perfect for the life we have right now…broken and hurting but trusting and having hope for an abundant life to come for Isaac. There are many, including us, who are living close to the floor in prayer, right where God meets us. We sit with him, touch him when we can, we beg God to fix him, make him whole and healthy and strong enough to come home. We already love him more than any words can speak. I have to pry Theresa away from that isolette, his little cocoon that has been all the life he has ever…
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That I might show you my power…

This verse from Exodus continue to reign in our lives. I know I shared this verse just a few days ago, but we cannot hold back using it again as we have felt the tremendous love from all who read this blog…and share it. But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth Exodus 9:16 We often hear from people that we must be very “special parents” to not only have one child with special needs, but now two. We hear words like gifted, special, patient, strong…blessed. To be honest, most of the time those words just roll off our backs…and we think, blessed? As Matthew is rubbing his own poo into the carpet or taking his clothes off in public to regulate his body temp. Just a few days before Isaac was born I was wallowing in all of this “blessing” as Matthew was doing his happy yodeling noises as his two older sisters were performing in a ballet recital. Several people turned around and gave a little smile, a nod saying that he was okay. But, there was one person who turned around over and over and gave me the “get him out of here” look. I moved to the back. The back is where we spend a lot of time enjoying the many activities our family is involved in. I determined in my mind that I did not move because Matthew…
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Isaac update…”bubble wrap” needed

Your prayer response has been nothing more than humbling. Your notes of encouragement and scripture have been what has kept both of us going through this whirlwind of the past few days. The most immediate need of prayer is for Isaac and the surgery he will be having tomorrow (Tuesday) to repair his EA and TEF issues. What those stand for are Esophageal Atresia and Tracheal/Esophageal Fistula. In the language you and I use the first one means that his food pipe goes down, stops and has created a pocket. This means secretions and food have no where to go. The windpipe goes to his lungs…but also continues on to his stomach where the esophagus was supposed to go. The surgery will be to make all of the right connections. Please know that I have completely oversimplified this explanation…prayer is needed not only for the surgery but also for the recovery. Isaac will not be able to even try to eat until a week or so has passed. Combine this feeding difficulty with his cleft palate and lip, and any cranial nerve swallow problems, Isaac will have quite a learning curve just to eat. Many of you have asked how we are doing. I had a thought on the way to the hospital this morning after seeing and reading many of the messages you have all left. Your constant prayer has had an insulating effect on us much like being wrapped in bubble wrap. We can feel the bumps of what is going on around us…
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For such a time as this…welcome Isaac Gabriel Troupe

So, not your typical day. Life was going on as normal as life can be in our house, and all of a sudden… Theresa and I are proud to announce the arrival of Isaac Gabriel to this world. Born this morning (May 6) at 8:37 a.m. and weighing in at 5lbs 3oz. Not what we expected today…almost a full 6 weeks earlier than “planned”. And I mean to emphasize planned. We just had this conversation on our way back from U of M on Thursday about how we can sometimes take on the roll of God and plan, plan, plan. By doing so we can nearly put God in a box. We prayed that His will would be done and all of the details would work out. He did just that. He chose the time, He chose the place. One song that came to mind as we have been gearing up for this journey was one by Wayne Watson…For Such a Time as This.  chorus: For such a time as this, I was place upon this Earth, To hear the voice of God and do His will, whatever it is. For such a time as this, for now and all the days He gives, I am here, I am here. And I am His, for such a time as this… We have been preparing, praying and waiting for such a time as this. A great scripture to go along with this thought is found in Exodus: But I have raised you up for this very purpose, that I might show you my power and that my…
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His Name: Isaac Gabriel Troupe

You heard it here first folks! His name will be Isaac Gabriel Troupe…Our fifth child to be born (tentatively) on June 8, 2012. We liked Isaac because Isaac means “laughter” which is what many people did when we announced we wanted to have another child. And, Gabriel because Gabriel means “strength of the Lord” which we hope God grants to him and to us through him to begin and follow through on this journey. A big thank you to all who have been diligently praying for all of us in the Troupe household. Also for sticking with this blog and prayer chain as we have taken a small break away to “stay the course” and gathered the much-needed information we need. Throw in the mix a change in duties at my workplace, Easter weeks and Matthew adding some of his own dictated home improvements…well, you can imagine how crazy things have been. Now, for the information many of you have been asking for and to answer the question of “What is going on with Isaac?” Many of you have prayed for us to get the needed care for Isaac (and Theresa) “out of network” from our insurance provider. Our provider is great, but the specialized care needed for a CHARGE Syndrome birth, with the multiple complications that can arise, it was crucial for us to arrange for birth and after care at the University of Michigan, Mott’s Children’s Hospital. Your prayers and our’s were answered and granted after jumping through a few hoops and…
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