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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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!

419037_10201273176817949_1948487601_nThe 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 you don’t know where you are.” So very true…in many aspects of life. We have to know where we are if we have any chance at getting where we want to go in life. It requires and honest, real “gut check” of where we are currently…in our relationships with our spouse and kids, our finances and especially our journey in our walk with God.

I am convinced that it usually takes some kind of tragedy or difficult circumstance to bring us back the reality and fragility of life. Crisis in our lives are a true test of where we “are” both physically and spiritually. It is also a true measure of the quality and commitment of the people you hang out with and call friends.

Last week we were touched by news of a few fellow CHARGER’s, one who was having a routine medical procedure that went terribly wrong and resulted in a long hospital stay and few missing teeth. And, another family who clings to the stark reality that their child may not be well enough to stay on a heart transplant list…a situation that was described by the parents as “we all know where that end will lead us…”

65001_10201479837103965_1385474436_nWe had our own reality check this past week that tested our training and response. Theresa was putting Sarah Anne to bed and I was unloading the dishwasher in the kitchen just about 20 feet from Isaac’s bed. Isaac resides in our great room so he is always close to the pulse of our home. As I was working I heard a change in Isaac’s breathing and as I quickly turned around and started toward him as he was pulling hard at his oxygen tubing and HME (his artificial nose attached to the end of his trach). In his tugging and playing he had pulled his trach tube out of his throat…he was gasping for air and turning blue. I screamed for Theresa’s help and within seconds we were able to get a new one placed and his airway open again. A reality check, for sure and another reminder that we cannot even take a few second’s break from being on-call to Isaac’s needs. Our response was so quick that his low oxygen sensor alarm was just alarming as we finished. The first alarm was his heart rate. I am sure if we were wearing a heart monitor ours would have been going off as well!

Always be ready, never become complacent, do not waiver…reminds me of some familiar words:

But make sure that you don’t get so absorbed and exhausted in taking care of all your day-to-day obligations that you lose track of the time and doze off, oblivious to God. The night is about over, dawn is about to break. Be up and awake to what God is doing! God is putting the finishing touches on the salvation work he began when we first believed. We can’t afford to waste a minute, must not squander these precious daylight hours in frivolity and indulgence, in sleeping around and dissipation, in bickering and grabbing everything in sight. Get out of bed and get dressed! don’t loiter and linger, waiting until the very last minute. Dress yourselves in Christ, and be up and about!  Romans 13:11-14 The Message (MSG)

Where are you right now? I don’t mean your physical location…I am talking about in your spiritual walk. The most elaborate map (or plan) in the world is useless unless you know where you are…

Many people wonder how we deal with the ups and downs of medically fragile kids. My answer would be that we don’t deal with it alone. We lean on each other. We lean on those who we may not know personally, but know as a fellow traveler on the same road. We lean on our faith in a God who made each one of us unique…and perfect in his eyes. We also accept that these kids are not our own. They belong to a larger family of people who pray for us and support us. We deal with it by being transparent and allowing our experiences to be used to share our story with others who are hurting or have, as the words above say, lost track of time and have dozed off. We are encouraged by encouraging others.

Please pray for Isaac this week as he will have the first of several surgeries to repair his cleft lip and palate. His first surgery will be on Wednesday of this week (July 10). Pray for Matthew as he is going through a period of restlessness and not sleeping, sometimes not at all on some nights. We hope it is due to his routine being disrupted. Please pray for Hannah and Megan as they enter into “fair season” showing multiple animals in 4-H over the next few weeks. A fun time, but also exhausting!

I will leave you this week with a video clip of Isaac with his new “speaking” valve that he was fitted with just a few weeks ago. We have never heard his voice, his cry or his laugh since he had his trach put in at 5 weeks old. The clip is of Isaac being entertained by Megan…you may laugh and then cry with us as you hear Isaac for the first time!

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  • JoeD

    Hey Kevin,
    Reading about your reality check w/Issac reminds me to be thankful God never takes his eyes off of me! Thanks for getting back safe and sound.

  • Mary b

    Hello Kevin,
    My name is Mary Yearwood. I live in Amarillo Texas. I discovered your blog while taking a class from the Perkins School for the Blind for some continuing education credit. Currently I transcribe Braille for my local school district, but I am a certified teacher of the visually impaired, and I want to keep my certificates current.
    I am also an adult with special needs. I am inspired by your writing about your sons. I am glad that you are willing to share your stories, so that others can benefit from the way you choose to deal with the journey you are on. Thank you for your words of wisdom. I look forward to praying for your family, and to following you on your journey.

    • KevinTroupe

      Mary, thank you for your kind words and thank you for the work you do…I am sure it is very rewarding. Kevin