This weekend marks the one year anniversary of my youngest son's diagnosis with Spinal Muscular Atrophy. We will spend Saturday at a Walk-A-Thon organized by my friends to help raise money for his related medical expenses.
The arrival of this infamous milestone is cause for me to reflect on all that has transpired over the course of this last year. Obviously, Fulton's diagnosis is hands down, the absolute worst event that occurred and probably ever will occur in this family. When faced with a disease like SMA, everything else in ones life falls quickly, and clearly into perspective. The spiritual, physical and emotional toll is unimaginable and ongoing. The only way I can describe it to those whose lives are not touched by a similarly devastating event is as such; a gaping, open wound on my very heart and soul. There are times when the wound is covered by a scab and the pain is less intense, the fears and tribulations of the trauma that caused the wound seem long past. But other times, the scab is ripped off anew, sometimes only by a thoughtless word or gesture, and I am left clutching at a hole from which pours forth unceasing pain and agony, and drowns all joy until the damage can be repaired.
Compared to such, how could whatever else life hands me, compare? So it must seem to many that I am ignorant, foolish, hardhearted or prideful when I do not response emotionally to what others consider a stressful situation.
In the last year, on top of Fulton's diagnosis and ongoing care, we have welcomed my husband's parents into our home, as permanent residents. We accepted God's surprise blessing of another baby, due Nov. 16, into our lives. And today, I will watch my husband arrive home from his job of six years for the last time; laid off and unemployed.
What is one to do when confronted with so many situations that lay out of ones control, or seem to have slipped through the cracks in an otherwise meticulously organized life? I have tried to think of ways to write about this topic for quite awhile and I have no concrete answers to the questions I've been asking for the last 12 months. I've relied heavily on my sense of humor and heavily on abandoning everything to God. When I allow myself the time and energy to dwell on my situation I feel like Atlas, balancing the world on my shoulders, and I am crushed, and defeated.
There is only God. I could reject Him now, and blame him for everything and curse my situation. Or I could turn it all over to Him, the only One who can bring good from what mankind can only understand as tragedy.
I don't want to be a "Job" and I feel like now I keep expecting another disaster to befall our family. But accepting what comes our way as God's divine plan for us make everything manageable. It is not an excuse for throwing up our hands, as if we have no choice in the matter. In fact by choosing to participate with God in these trials we are more apt to learn and grow. Sacrifice makes us stronger and helps us to persevere down the path God outlines for his followers. Jesus never claimed our life on Earth would be easy and I have to laugh at those who feel only good things come from God and bad things are what we do to ourselves. Convenient, comfortable and casual is their brand of Christianity. We have so much to gain from the bad things that God allows. Just because the rewards lay outside the understanding of mainstream society does not mean they don't exist or have tangible value.
I am a different person than I was a year ago. My situation shows me more clearly than ever my own faults and failings. I hope the next year, most especially, brings my son a miraculous cure, but secondly a joy and hope in accepting God's will, while offering up the pain, rather than a hesitant and reluctant walk with Him. May my joyful example convert the hearts of those who now only understand my faith as a curse or cause of my misfortune.