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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Do you have a praying mattress?


Sarah Anne’s “Praying Mattress”

I just love the innocence of life through the eyes of a 4-year-old. This summer a praying mantis has taken a liking to our front porch. Many times while entering and leaving our front door it is relaxing on a brick capped wall next to the door. The first time Sarah Anne encountered this new friend was on the sidewalk along our garage. She came in the house loudly exclaiming “there is a praying mattress on our sidewalk!”.

We have certainly had our moments of needing prayer over the past 17 months with Isaac…and over the past 12 years with Matthew. Many long, sleepless nights of prayer on our own king sized Sleep Number “praying mattress” as we prayed those boys and our girls through life. As we have seen a break in between the medical crisis in our lives we have been busy praying other families in our CHARGE Syndrome family through their crisis. Theresa and I have been both touched and burdened with crying and praying for losses, surgeries, procedures and therapies for our other CHARGE friends. The “praying mattress” gets a lot of use. We know very well the fragility of life.

Is prayer your steering wheel or your spare tire? Corrie ten Boom

We have learned over time that we do not pray for God to fix everything and take away all of our struggles. We learn that prayer is not the final resort, what we do after all else fails. Prayer should be our steering wheel, guiding our thoughts and our direction. Prayer has a way of helping us refocus and hit the issues in our lives head-on.

Peace. it does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.  Unknown

On one recent sleepless night for Matthew I was keeping a listening ear on him as he was awake in his bedroom next to ours. I was recalling the end of summer and the transition into the fall and recalled the milestones we have passed with seemingly little fanfare. So often we ask for prayer for the moment. Here I would like you to rejoice with us and be thankful for the non events. No hospital stays for Isaac and no major illnesses under our roof. Yes, we have had cares with Theresa’s mom and the ever-present vehicles issues, but even those make us feel a little more like a “normal” family. Another huge leap was with the help of our church family and with much coordination of the Special Needs Ministry of our church Theresa has been able to join a bible study group on Tuesday mornings. She is able, at least for a few hours each week, take a much-needed respite from the demands of caregiver and being a mom.

 These cords are the result of a very active Isaac!

These cords are the result of a very active Isaac!

We are grateful that we have had some time to just say thanks for a smooth patch of road. Yes, the Troupe family lives on the edge most of the time. We live lives full of noise (literally!), trouble and hard work. But, our focus is with hands on the steering wheel, eyes on the road ahead and not on the spare tire in the trunk. The next hill is always on the horizon.

Just about the time I was wrapping up my thoughts on writing this blog…the Troupe “normal” showed up yet again. On an outing celebrating Hannah’s birthday Matthew broke the tranquil meditating stillness of a koi pond at a local mall by pushing Sarah Anne in while she fed the fish. Ah, the memories we create…good times.

Prayer Update: Please lift up Matthew and Isaac as we spend a very long day at the University of Michigan this next week. We have 8 appointments and 3 tests/procedures all in one day. Pray for stamina and good reports. We are most concerned at this point in the condition of Isaac’s esophagus repair site and the status of the surgery he had on his stomach to eliminate reflux. We feel that one or maybe even both areas are not as they should be and need some attention.

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  1. Linda Marie Hamlet

    Thanks, Troupe family for living so others can see your faith. I love the “Praying Mattress.” Personally, I’m so thankful that God is always available in those wee hours of the morning when it seems my heart is the heaviest. One of my favorite Psalms is 121 “I lift my eyes to the hills, where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip—he who watches over you does not slumber…nor sleep.” Praise be to God that he can direct my thoughts in those dark hours and he listens to my silent pleas for direction in the still of the night. Love you guys!

    1. KevinTroupe

      Linda, thanks for sharing that Psalm…I love that one too. There are many times we (and you) are in the familiar “still of the night” of a hospital room or even at home. I also take comfort in knowing that I am not alone at those times. Thanks for being a prayer partner…the prayer goes both ways!

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