We are hearing from many of you. Your stories fill me with passion to help families with this disease and fight to figure out a way to conquer it. But fighting is exhausting as we all know. And from somewhere inside of us, we keep finding a way to another path, another treatment, another doctor or a prize to keep us going. This story is shared by a true fighter from Florida named Deborah. Her family has gone through the struggles that so many of us know but one thing that amazes me is her fortitude. She shares her story here:
Gotta keep my eye on the prize….
My son Sammy had been out of “regular” school for approximately 18 months. It has been difficult for me to keep track of time, or rather for time to keep track of me; an odd, surreal state I have been trapped in. It consists of before Sam was sick and after Sam got sick, it is really that simple. And I as his mother have been suspended in a time warp of sorts caring for him, maintaing his treatment, managing his meds, advocating for him, organizing his multitude of appointments and of course, watching his every move (just to name a few).
Sad, long days left me wondering when will things ever go back to “normal”? Will I ever know that feeling again? I took it all for granted….. For me, part of “normal” meant that Sam had to return to school, that was my prize. Clearly, I was exhausted from the disease but well beyond that was the secondary loss my son was having due to a lack of social and emotional norm for a teenager. Month after month, the wear and tear of that became more apparent to him and to me. It was a dull ache that plagued my mind and perhaps the force of that propelled me forward.
I longed for the boisterous, loud, messy, and sometimes annoying schoolboy my son had been. The forgotten homework assignments, the missing textbook, the backpack that looked like it could explode, the filthy uniforms, the occasional phone call from a teacher, that is what I craved. How odd that the things that upset me, now became my goal, my “prize”. But as part of my son’s road to recovery, my intent was to return him to the ninth grade.
This week marked that occasion; it was filled with a happiness, pride, trepidation, doubt and utter disbelief. I can’t believe I did it, it almost doesn’t seem real. After looking at every school within a sixty mile radius of Miami, we decided the best school for him was the school closest to our house. Sometimes practical wins.
The first day of school, after drop off, I did not know what to do with myself. My “to do” list was about 3 years long, and I didn’t even know were to begin. I had fantasized that the minute Sam started to school I would grab a mindless National Enquirer, a bottle of wine, head directly to a lounge chair at the beach and never get up. But instead my first stop was the local hardware store to get “somethings we needed for the house”. I slowly wondered the aisles of the hardware store, my frantic pace was momentarily gone, I even said hello to strangers, and it was bliss. -Deborah
Thank you Deborah!
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of triumph, hard won wisdom, sacrifice and lessons learned. We are a community and have much to learn from each other.