Tuesday, May 11, 2010

Wheelchair Weary

About a month ago we ordered a wheelchair for Grace. The wheelchair we picked will look much like the one above but is hot pink (of course). We had been putting it off this decision as long as we could but as we may be losing Medicaid soon, we decided it was time. I had been dreading this moment and praying for a miracle so that it would never come. Although Grace is still progressing and we are still hopeful that she will walk unassisted one day, it is inevitable that a wheelchair will be needed for long distances. I guess this is just one more detour from from denial that my daughter has CP and will always require some kind of assistance.

I guess I've been thinking a lot about the wheelchair and how it will affect Grace and our lives, because last night I dreamed I was in a wheelchair. I was not with anyone I knew but I was in place that we frequent. The only people that acknowledged me where those also in wheelchairs. Everyone else just ignored me...or if they looked at me, they would look away. How will this wheelchair exactly change our lives? I guess we'll find out soon.

Saturday, May 1, 2010

Yeah! Just What She Said!

I've done it before and I'm doing it again....I'm deferring to Ellen's blog. She is a wonderful writer and has an amazing son that she loves to write about. Just change "him" to "her" and insert Grace's name and you have my child and our situation. Ellen, you have said it perfectly...

Oh, and Ellen, I love that Max!!

So Many Unknowns

Grace at 4 1/2 years old weighs only about 27 pounds and can still be lifted and carried with reasonable ease. However, it is becoming more difficult and I defer to Abe to carry her much more than I used to.

This past weekend we went to a birthday party and much like most children's birthday parties, festivals, etc, there was a bounce house. Big hit for the kids and Grace wanted to be right in the middle of it all, as she always does. We have also been to several parties at Pump It Up or similar venues, where Grace wants to climb, slide and jump with her friends. Abe and I always do our best to facilitate this for her but it is starting to become increasingly harder and there are only so many of these things we can do with her.

Today, we had some friends at our house to play and they all wanted to get in the playhouse. Grace wanted to be right there with them. I couldn't get into the house with all the kids, so I did my best to help her through the door and then hung onto her shirt to keep her from falling. I can't believe she didn't and she had so much fun with the others.

How long will we be able to do this? Will she ever be able to do these things herself? What do we do when she is too big for us to carry? What will I tell her when she asks to play with the others and because of her physical limitations, she cannot? I can barely stand to think about it.

You see, Grace is the most outgoing and friendly of my children. Will her personality change? Will she want to hide rather than entice others to talk with her? Will I lose my sweet Grace?