Made of Gray


Holly D Gray12 Comments
I woke up this morning with thoughts of Hope*. Hope is a little girl from my past. The only person in my entire life that had special needs. I take that back...I had a great uncle who was blind and lived well into his 90's, but we didn't visit much.

Hope entered my life when I was 16 and working at a local daycare. She was there for the summer and honestly, to me, she was the little girl in the wheelchair. I was in the infant room at this daycare so I didn't have much contact with her. She was actually with children her own age which I now know is something very rare for a child with special needs.

I lived in a small town. I saw Hope often. At the store, at the gas station she was hard to miss. She was the little girl in the purple wheelchair. I tried not to make eye contact out in public, but always paid attention to her at the daycare.

A few years later a good friend got me a job at a local nursery. It was a koosh job and it paid good. Two days a week taking care of sweet babies for a few hours. I've always been the one to love babies. I would search them out and annoy their mothers with cutesy baby voices and I would often times touch the babies. Huh, if I had only known how it made the mothers feel...

My friend had been working the nursery for awhile before I arrived. The first Sunday I worked, there she was. Hope. The familiar purple wheelchair with the smell of summer and hot, sweaty plastic engulfing it. The easy to cut and take care of, chili bowl hairstyle. She was probably 8 years old at the time. The way she scissor kicked her legs. The fact that cognitively she was around 6 months old. The fact that we had to change her diapers. The fact that she wasn't in a room with other 8 year olds, but with babies. The way that she would yell if she disliked something and scream with a big smile on her face when she was happy. I now understand a lot about her cerebral palsy. Not because I had asked her mom, but I now recognize the characteristics she had. In fact none of us had asked what happened to Hope. There were rumors of a delivery medication accident, but I don't know if it was true. I never asked and for that I feel like I robbed her mother of something. I'm not sure what but why should Hope's life have been so secretive. Sure she was difficult to understand , but I eventually could read what she needed. We talked to her mom more on a casual basis when she would drop her off and pick her up. Nothing serious. Without knowing all the details I really connected with Hope. Overall, I came to love Hope over the many years that I worked in the nursery.

Which brings me to the instant, the exact instant, that the NICU doctor told me that Caleigh had PVL and I asked "What does that mean" and he muttered the words Cerebral Palsy; my brain went straight to Hope. She was my poster child for CP. She was the only person I knew that had it. I was so naive even then. I pictured my little 4 month old Caleigh scissor kicking her legs, sprawled out on the floor mouthing a toy made for a baby. I don't know if this made our news more tolerable or worse to swallow.

I am not telling everyone this story so that you feel sorry for Hope. She is a bright and beautiful little girl who is really just amazing. In fact, so amazing, that she will forever have a spot in my heart. I guess I just felt the need to put my feelings down. I have a lot of regret about the things that I've said and thought towards those with disabilities in my past and Hope was no exception. By no means was I a horrible person, but either way I feel bad. It's true that you don't know how a person feels until you've walked a mile in their shoes. I've been thinking about Hope ever since that fateful day in November of 2007.

It's been many years since I've seen Hope and her mom. She's bound to be a teenager now. Not the teenager her mom imagined her to be, and I wonder how she feels about that. Actually, every single milestone or decision we make with Caleigh; I always think of Hope and her mom. Maybe at some point we set aside our goals and dreams for our children and make new ones because that is life and that is what has to be done. I haven't given up on my dreams for Caleigh yet. I still have visions of the 'normal.' I wonder when that changed for Hope's mom. When did you decide to make new goals and dreams for your child? Or do you still have visions of the 'normal?'

*names have been changed to protect privacy
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