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This Exit, No Return

A Reader’s Theatre, By Joy Cowdery continued...

Jill: Mason was 15 months old when we received his diagnosis of Angelman syndrome. He was 9 months old when we first knew something wasn’t right. At first, our pediatrician told us to put the baby books away and enjoy him since he was just a “lazy baby” and would catch up soon enough. At 12 months when he wasn’t sitting on his own, we pushed further. His neurologist ordered a battery of tests, all of which came back normal, and then steered us towards physical therapy and early intervention, again all the while assuring us he was just a little on the slow side, but she was sure he would surprise us all and take off. A few months later, I sought genetic testing on my own with a free genetic clinic. The call came one bleak March afternoon. He called my husband and announced that Mason had Angelman syndrome and asked what type of seizure medicine he was on. “Seizures? Angelman?” My husband hung up and called me at work. I headed home and straight for the computer. Reading the information on the Angelman website was like watching a horrible car wreck in slow motion. I felt like I had a boulder sitting in the pit of my stomach. I stood up from the computer ready to vomit... My husband grabbed me crying and we clung together sobbing without knowing what to say.

Beth Ann: On the very day we brought our second son, Coe, home from the hospital, we saw the neurologist for the first time to talk about Craven. It was official. It was the A word. But very mild, we were told. I didn’t care how mild it was - my child had just been diagnosed “less than perfect.” Was it me? Was it the vaccinations? Does it matter? Not really. My son has autism and I have to help him.

Jill: I stayed in the guest bedroom for a week, crying for what Mason would miss.
Flowers and cards poured in from relatives as if there had been a death in the family. A death to the dreams of the typical child we thought we’d given birth to. Then one day out of the blue I looked down at Mason and he smiled up at me in the same sweet way he always does and I realized he was not dead. He was right in front of me, smiling, no matter what label had just been slapped on him. So that day I wiped my tears and started to get back to my life and create new or different dreams for myself and Mason.

Jim: Yes, there are challenges. Aaron will never speak, throw a ball with his brother, tell me where it hurts, use a spoon, or run through the grass on a summer’s day. Only thinking of the challenges can make you bitter.

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