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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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God is in control…

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” Ephesians 3:20-21 Well, today we were reminded of who is really in control of this precious gift we have given the name of Isaac. It is amazing how quickly we can be thrust into total reliance of life and death and are at the mercy of who is really in control and all of those around us who plead on our behalf at God’s very throne for mercy and grace. Early this morning as I (Kevin) was getting briefed by Isaac’s night nurse, Isaac began showing signs that something was wrong…in a matter of minutes he went from a wriggling baby to limp and barely responsive. In a flurry of activity we went through our emergency protocol while we waited for medical personnel to arrive. The emotions and adrenaline rush of having to “bag” (do CPR) on your own child is something that one can never really prepare for. We had a flood of thoughts going through our heads as I was with Isaac in the back of the ambulance speeding toward the hospital and Theresa stayed home to formulate what we call the  “crisis mode” plan of care for the rest of the kids. Stroke? Respiratory failure? Seizure? As we let the word out to pray for Isaac,…
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Amplitude…well blended and balanced

Recently we were invited to watch a friend compete in a bicycling event held in our own home town. This was my first time attending a professional bicycling road race and I was taken in by the excitement of the crowd as the various levels of beginner, amateur and professional racers took their turn. I was intrigued by the various pieces of equipment; special bikes with barely any weight, shoes and pedals, seats, sleek helmets, and all the different wheel and tire combinations. All this equipment is intended to make the rider better and faster. As one looks deeper into the sport there is conditioning, diet and precise strategy of teams to help pace a race and improve the odds of one person on your team who has held back, conserving energy, to sprint at the end. Even though I have owned several bicycles from the early years of “sissy” bars and banana seats (showing my age) to my most recent mountain bike, this whole sport was way out of my league. Sure, I could have put on all the right equipment and grabbed the nearest bike…but, I would have just been in the way after just the first lap as I awkwardly made my way around the course. It would have been entertaining watching me  try to make all of the equipment, intended to make one better and faster, just work together in unison. Over the past several weeks as a church we have been studying the Armor of God reference from the book of Ephesians….
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Our two special needs kids have Wrecked our lives

Did the headline grab your attention? Good, it was meant to, but not in the way you may be thinking. Sure, I could go down the path of “why me?” and all the things we miss out on as individuals and as a family because of having two children/siblings with special needs. There are missed opportunities, missed friendships, strained family relationships, misunderstandings of our motives or reasons by not being able to accept invitations to do things, why we have germ phobia…all part of the sacrifices we have to make with having special needs kids in our family. I don’t want to follow that path…we as a family have been Wrecked in a different sense of the word. We have been Wrecked in a beautiful, remarkable way. I have been reviewing and have been part of a team that is launching a new book that is about to be released next month…a must read. The book is WRECKED: When a Broken World Slams Into Your Comfortable Life, by author, blogger and speaker Jeff Goins (download the first section of the book for free using this link). Wrecked is a journey of unbecoming, covering the stories of people whose lives have been turned upside-down in the best way possible—and what they decided to do afterwards. Jeff explains in the following description of the book: “We all want to know why were put on this earth, why we were created. But the answer may, in fact, shock you. Whether it’s a trip to the developing world, a brush with poverty,…
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(Whistle blown) Flagrant use of the “R” word…

I work hard at being a person who is slow to anger and tolerant of those around me who may be having a not so pleasant day. I am usually not one to rant about something…but, this past week something happened that I thought I could not ignore. I thought I would share my experience with this audience as a “public service” announcement in sensitivity training. As I was running errands with my nearly 3-year-old daughter we were somewhere between the Goodwill store and the grocery store where I was stopped at a stop light. I was deep in thought about the day, more specifically about how our newborn was doing in the NICU and the rays of hope we were seeing and hearing about the prospect of Isaac coming home after his 8 week stay. These thoughts were intermingled with the contentment that comes when we go through trials. Yes, I said it, contentment. Contentment in knowing that it is the trials and the rough times in our lives that bring the little things in life to the forefront. Like the blessings and new life that can only come when a forest is overrun by fire, it is good and healthy to go through tough times. You may be thinking that this is a lot to be running through your head during 30 second red light. Apparently it was for me too as I apparently had a lapse in the time the green light came on and the time my right…
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Creativity…Are you learning how to say something?

Matthew has been exploring his creative side for the past several weeks with his ipad that was donated to him for Christmas. Along with the many apps that are available nowadays for kids with learning disabilities, the ipad features the ability to take pictures. Matthew uses the camera to capture a mental list of photos he has created in his head. We do not know what this list is and he can be seen running after his ipad when something comes along that is picture worthy on his list. One morning Matthew was parked in the hallway of our home with his ipad in camera mode. This position is not foreign to us and neither was the ipad so I did not think much more about the scenario…until I heard the scream coming from the bathroom. Next on Matthew’s picture list was mom getting out of the shower! He was in waiting like a seasoned paparazzi for the perfect shot. He went away frustrated. The rotation went like this: curtain closed, ipad on the ground…sound of curtain opening, ipad at the ready for the shot…ipad noticed, scream, shower curtain closed…repeated several times until dad stepped in and distracted Matthew enough for mom to get to the bedroom. His creativity was further explored a few days later as he dropped his pants in the middle of the living room floor and proceeded to step over and hover above the ipad…thankfully he still had a diaper on! He is still seeking that picture and tries every few days or so to cross that one from…
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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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