Miles Smiles (My Heart Half Heals)
Mothering a severely disabled child with love
At the toy store
When Miles was a baby, we had so many struggles beyond just keeping him alive and safe. Even the act of finding our son the perfect gift was rife with heartache.
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A perpetual gift
After my firstborn child had received two devastating diagnoses, I started trying to get back out into the world to do “normal” things.
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The Year of Me
A year ago today, I awoke at 5 a.m., and vaguely remembered that it was my birthday.
It was also Friday the 13th, and I was feeling lucky.
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The first diagnosis
I’ll never forget that phone call as long as I live. The phone rang as I read a line from my warped yellow copy of “Desiderata*,” which I had uncharacteristically posted on my refrigerator months earlier. It had been included
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The second diagnosis
I’ll never forget that week as long as I live. It was 6 a.m. on a Thursday morning in early June. I was up early to groggily nurse Baby Miles in the living room rocker. He was now almost five months old, feeding peacefully as he had since the day he was born.
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A birthday ambush
At Miles’ eighth birthday party, I saw what I knew all too well was a return seizure. Quick and small, imperceptible to everyone else, it was a cruel visual amidst the balloons and laughter.
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