My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Thursday, February 17, 2011

Home!

I came home yesterday afternoon. Once I was in the car, the trip wasn't so bad but getting there was a little bit of another story.

We planed to leave right when it would be time for my medicine again so that I could just sleep the whole way home. My parents had started getting everything ready and were putting everything in the car. I got into my wheelchair by just lifting myself up and scooting into it while my dad held my leg up (my wheelchair was right against the bed, parallel). I've learned that that's the easiest was to transfer, rather than using the walker. I sat up in my wheelchair for a little bit because I often have problems with passing out post-op and that was the first time I got out of bed since my surgery. I was able to get into the bathroom with the walker and I was feeling tired, but still thought I could do it. I put some clean clothes on and then was going to try to stand up again and get back into the wheelchair. Then next thing I knew I was sitting down and just shaking. Luckily, my mom and dad were there. My dad was holding my leg up because it is very uncomfortable if it hangs down, and my mom was holding me up to make sure I wasn't going to tip over. Once I felt better I was able to get back into the wheelchair and then into the car and I pretty much slept the whole way home.

I'm still in quite a bit of pain and still really tired, so I'm pretty content with just laying in bed all day and moving as little as possible.

1 comment:

  1. Madeline, Just keep thinking how great it will be when this is all over and your legs are just like everyone else. Remember God is on your side right there with you!

    Much love
    Ama Jo

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