A Special Chair

Never did I think I would ever even meet someone with a rare disease. And now, my very own baby girl has a rare disease. It's a world of its own, with it's own people, ideas, beliefs, and lifestyle. And along with this new lifestyle, comes equipment. My home, once neat and clutter free, now has "stuff" in every corner of every room. My bedroom houses a video monitoring system while my step-sons' bedroom houses a portable oxygen tank and a trampoline for therapy. Sophia's room has an oxygen machine, a pulse oximeter, a feeding pump, stethescopes, syringes. The kitchen has a gram scale for measuring formula, a Rubbermaid tube of medication, a large heavyweight pill crusher, extra feeding tubes. Our living room holds suction machines, a Special Tomato Feeder Seat, a Tumzee for therapy......and, a wheelchair. Yes, a wheelchair. This is our newest piece of equipment. It's not your grandpa's wheelchair but rather a cuter version. It is mostly blue with a few patterns of color here and there. It is on loan until we get our own wheelchair. I still remember when a wheelchair was first mentioned to me. A wheelchair? For a baby? I had never even thought of such a thing. A wheelchair for a little bitty girl, my Sophia? I don't think I've seen a little girl in a wheelchair before. I couldn't imagine there would be such a small thing. And there may have been a time when I cringed at the idea of Sophia having a wheelchair. The idea that others would immediately know something is not "right" with Sophia. Of people staring at her even more, and thinking how sad. But now, I don't see any of that. I don't think of it as being sad or pitiful. Now, I see a sweet girl that has a hard time sitting up on her own and she needs a seat that will help her. I see a girl that I want to take everywhere with me but I want her to be comfortable too. I see a girl that I want other people to see, to take notice of, to smile at, and get to know. I see a girl that can change the world, and in many ways, already has. So if you see my sweet Sophia sitting in her wheelchair, sitting up like a big girl, looking like a toddler, please smile and say hello to her. Know that she is special in more ways than are visible to the eye. It's okay to touch her hand, ruffle her hair, squeeze her foot. She is just Sophia...I mean sure, she is a princess and everything, but even a princess needs friends. :)