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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Suction Please!

Here in Western Michigan we have just made it through yet another snow storm. Another clearing of the driveway, another clearing of the end of the driveway after the snowplow guy deposits half of the snow from our road there, another repositioning of the mailbox on the post after the plow guy knocked it off (I swear those guys tally points for that)…makes me think of warmer days and thoughts of summer and vacations.

As my thoughts wandered off and finally settled I found myself recalling a vacation a few years ago that accompanied a conference we attended in Costa Mesa California. With the help of some friends we were able to stick around for a few days and make some stops at some of the local attractions…one of those stops included the San Diego Zoo. That day the place was packed and people were shoulder-to-shoulder everywhere we went. Add to the crowd two wheelchairs, one belonging to Matthew, the other to the son of a fellow CHARGE family, Keegan, made for an extra obstacle course challenge. All was going well at the zoo…our feeding schedules were synced, our other kids where having fun together and us adults were enjoying our time of relaxing. A postcard moment…until Keegan decided to shove one of the m&m candies he was enjoying up his nose. If you are not around those with special needs you may have never experienced the sensation and visual awe of how the parting of the Red Sea may have been. The “parting” we experience from time-to-time can be caused by a seizure, a tantrum, a laughing attack, or in Keegan’s case, an out-burst of fear and screaming. Our job as parents is to assess the situation and react accordingly. Keegan’s dad is a police officer and his mom a military sergeant. Theresa and I have no where near their credentials, but we do have on-the-job training under our belt. Louis and I just looked at each other, shrugged our shoulders and went to work as the crowd parted and made way. As Louis and I tried to console Keegan, Theresa and Kim searched their bags for something, anything we could use to extract the candy. After our choices were lined up on the ground like a surgeons tool assortment, I reached for a 2oz. syringe used for tube feedings. I was nervous…not because of the procedure, but because of the crowd that was multiplying around us and could do nothing but stare and secretly talk amongst themselves…the pressure was on. Keggan relaxed as I removed the chocolate filled syringe from his nostril. Just that fast everything returned to normal and the Red Sea filled in around us. I don’t recall ever being specifically trained for m&m extraction.

“You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, I lived through this horror. I can take the next thing that comes along.”  Eleanor Roosevelt

If you are a parent, especially a parent or caregiver of a special needs person, one has to develop nerves of steel and a resolve to take life as it comes. We learn to live by a schedule as a “suggestion” rather than the ultimate rule of our lives…often having to alter the plan for a change of clothes, a diaper, suction, a reassuring hug, a feeding…or removing an m&m from where it should not be. Is it challenging? Of course, but if you like adventure and the unknown, a gift that many who deal with those who have special needs tend to have, the journey can be down right rewarding.

“Above all else, know this:  Be prepared at all times for the gifts of God and be ready always for new ones.  For God is a thousand times more ready to give than we are to receive.”  Meister Eckhart

Along with the right gifts, faith is an important part as well…believing that God has perfectly equipped you for the journey.

“Faith isn’t the ability to believe long and far into the misty future. It’s simply taking God at his word and taking the next step.”  Joni Erickson Tada

I have mentioned before that there is not a day that goes by that we do not fail to see the unique fingerprints of God in our lives…Whether it be in Matthew or in our other children that God has blessed us with. He has uniquely gifted us to deal with our set of circumstances…He has uniquely gifted you as well.

My prayer this week is to continue to hone the gifts and skills God has uniquely given me and to take Him at his word and continue to take the next step of faith.