Thursday, October 15, 2009

The Gift.

My birthday was two days ago. It seemed to follow the course of a typical day. Run at 4:30 in the morning with my girl, go to work, eat yogurt and Wheat Thins for lunch. Later, come home, get my baby girls, get dinner ready. Turkey chili.

We had celebrated in a small fashion the prior night with my parents. Nothing big. Just pizza and store-bakery cake.

So my true birthday looked to be your average Tuesday. That was fine with me. So I went ahead, made the supper, waited for Mark to get home. But after he arrived, something really special happened.

Grace opened her book bag and pulled out this clear plastic envelope. "Look," she said, "I got a book." Yep, you always get books from the library... "Come here," she waved before she patted the sofa cushion. No time to read, got to stir the chili, check the Facebook. "No, I want to read to you." Uh-huh. You want to read to me. "Come on, Mom. Come on, Dad."

I looked at Mark. Is this for real?

Four years ago last month, we took this same child on the long journey to Geisinger Medial Center in Danville. It was for the appointment that we felt extremely fortunate to secure, considering every major medical facility in Philadelphia gave us a year-long wait, at the very least. Some had us waiting 18 months.

At the time, we needed to know why she was flapping her hands, why she was throwing herself on the floor, why she was giving us vacant stares. And more importantly: why had all of her vocabulary all but disappeared. Words she knew were gone. Vanished. Her talking stopped. What replaced it? Screaming. And so we drove to this strange yet massive hospital--replete with its own children's hospital, trauma center, Ronald McDonald home, and constant shuttle service--in silent fear.

Today as I look at the initial report, I recall the caring words that stung harshly no matter how gently Tom Challman, the neuro-developmentalist, tried to delivered them. PDD: Pediatric developmental disorder--not otherwise specified. Autism spectrum. Severe developmental delays. Serious behavioral disorder. Something to be feared: a diagnosis that's not a diagnosis because her disability will never be pinpointed.

Would he predict she'd be mainstreamed with "normal" kids? Probably not. Did he think she'd ever grow up to live independently? Hard to tell. Probably not.

So we threw everything into her. Everything we could. Occupational therapy. Early intervention. Speech. TSS. Behavior modification plans. Gymnastics. Scouts. Art therapy. Some worked, some didn't. But we tried. I remember putting my two-year-old on the little bus for the first time. I'm not sure who cried more. She wasn't even potty trained, and here she was headed to an autistic class some 30 minutes away.

Fast forward to now. First grade. My birthday. Chili on the stove. Grace patting the cushions on the sofa. "I want to read you a story. It's called 'A Big, Big Box.'" OK. Whatcha got, kid?

Mark plunked down on one side; I sat down on the other. She opened the book and read. And read. And read till she finished "A Big, Big Box." And with each page, I silently wept. Tears of joy. Tears of relief. She beamed. I beamed. We beamed. I realized then, for that moment, that this gift will be the most memorable I've had in years. The gift of knowing that my girl will be OK one day. Maybe not today, maybe not tomorrow. But one day. That all of this planning and driving and therapy will all be worth it. It has to be. It just has to.

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