Friday, April 16, 2010

What is Disease? Letter to the IAFF through MDA

Firefighters of the Eastern Region!

It is a beautiful spring day! The sun is shining brightly and a cool breeze blows. In this moment, it is so easy to look at our lawns and forget that not so long ago they were buried in over four-feet of snow, and it is so easy to look up at the leaves budding from the shade trees and forget that in the not too distant future we will be cursing brutally at all of those bags of fallen leaves.

My son, Joby, has Duchenne Muscular Dystrophy (DMD) in much the same way that I have brown hair or you are a firefighter: My hair is not even a thought until I need a haircut, and you are a friend, a neighbor or a stranger I do not even see in passing until my house is ablaze and my children are trapped. But when the sun is beating down, all I can think about is that haircut, and when the flames rise, all I want to see is firemen scrambling to save us. Like this, Joby’s disease is not a disease until it is.

Last summer Joby could walk perhaps a half-mile with us at a very slow pace, and as a family we adjusted and enjoyed. Autumn came and winter left. Now it is spring, and the family itches to walk, but Joby tires after 100 yards. There it is: the disease appeared. Now we remember the past two-mile walks, the climbing on the playground, tossing the ball, swimming in the pool, …; now we see forward to rapid decline, the remodeling of the house, the power wheelchair, the handicap plates, the van with the lift…

But just last week, when we could not afford one of our own, the MDA through their “Equipment Loan Closet” program lent us a manual wheelchair to use for as long as we need it. This simple luxury for my son would cost, I estimate, between $300 and $500 that we simply did not have. One day we sat on the couch watching the sun set, wishing. When the sun rose, we “walked” three miles as a family again, grateful.

They say this disease has no cure, and today that is true—but it is not entirely true. On that one spring day, my hair was not brown, my house did not burn to the ground, and no one in my family suffered from this disease.

In the fall, we will sweat and suffer through days of bagging millions of little leaves, wondering how they can fill so many bags. We won’t likely remember that these were the leaves that were so beautiful today and gave us shade tomorrow. We won’t likely consider how the leaves will be transformed to new soil and new life later outside our sight. But last summer you and your men and women suffered under the brutal sun in your uniforms collecting pennies, nickels, and dimes like beggars from people who would look the other way. This year, though, out of your sight, our family walked around a lake— together—for the first time in two years! That was your autumn; this is Joby's spring. Now, this will be our summer: Joby will attend his first MDA Summer Camp program, likely with many of you present! Know that no child there or family here suffers from disease during that glorious week.

With warmest regards and sincere appreciation for all that you do, ...
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