Monday, August 5, 2013

Driving Miss Rae

Rae's wheelchair arrived last week. It was very bittersweet. I was so excited when they called me on Monday to schedule its delivery the next day. The excitement continued to build all day Tuesday. When Rusty showed up we greeted him at the door. Rae was grinning from ear to ear as he pushed her new chair up the walkway. I'm pretty sure she knew it was made just for her.

The fitting...she grew so much that
Rusty had to make a new seat.
After we buckled her into her chair, Rusty started making all the necessary adjustments (the only hiccup was the harness...the straps were not long enough) and that's when it hit me...

We just hit a MILESTONE!

It felt like I just did a belly flop from 50 feet. (Ouch!!)

It's here!!!
These are not the kind of milestones any parent thinks of reaching. Yet, here we are...huddled up in my office/Rae's therapy room, adjusting straps and lateral supports, mentally reminding myself of all the positive things this wheelchair means.

  • Rae will be better supported.
  • Rae will be more comfortable.
  • Rae will be easier for me to transport and move around the house and when we're out (she's 33 pounds and turning into a little back breaker).
  • People will see it and know that she's different so maybe they'll stop making presumptions about why she isn't walking (this one's a double edged sword because I'm also thinking..."Oh God people will KNOW she's different!").

Please don't misunderstand what I am saying. I love that she now has her wheelchair. I love the color I selected ( was new this year). I love that she LOVES it! I love the ease with which it turns, the smooth ride, and how it tilts so she can nap (but not the awkwardness of disassembling or reassembling it). I love that she will be more comfortable and supported. I love her wheelchair. I honestly do. I just hate Rett and all these unanticipated "milestones" we now have to look forward to.

Since we took possession of her wheelchair (after the initial order, first fitting, and delivery), we have used it outside of our home twice. Once when I went to the doctor for myself (gasp!) and last night when we went to hear G-Boss sing at church. My parents church has been so supportive and helpful (they helped with the garage sale and some members plan on helping us build her ramp this month). I knew they would just see the smiling, blue eyed angel sitting in a pretty new chair and I felt comfortable and safe taking her there. To my surprise, we weren't the only ones with a wheelchair last night. I'd like to think that our presence there was as much a comfort to her as much as her presence there was to me. We were not alone. Our paths have been different, but we're both pushing pretty pink wheelchairs.

Helping Mr. Rusty with the finishing touches.

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