Saturday December 17, 2011

How many times have we written here about adjusting to a new normal? We are attempting to do it again, but this one is really difficult. Our new normal is coming to acceptance that Shannon is disabled. This time the new normal involves navigating the world with a wheelchair in tow everywhere we go. We are learning to use an apparatus called a gait belt to help us move her without fear of dropping her. Another skill, as Shannon said "they didn't teach you in mom school." We must find small moments of joy amongst the overall sadness.

Shannon talked with a friend of hers on the phone this morning. Listening to her explain what's been going on in her own words and with her impeded speech is so heartbreaking. Yet her friend made her laugh and sent a text later saying how good it was to talk with Shannon. I hope that Shannon's friends can remember the wonderful kid that is trapped inside her terrible body. I think they will.

Today it was sunny and 50 degrees, and we ventured out. Shannon's request: to go out to breakfast at the Waffle House. The large dose of steroids - up to 14mg per day - mean Shannon's appetite is healthy. Wanting food is one thing. Being able to feed herself and swallow it is proving to be a more difficult task. She is learning to feed herself left handed, but it's made more difficult by the patch on her left eye. Try it - eating with your non-dominant hand with one eye closed. Oh yeah, and with numbness on one side of your mouth and with your brain forgetting to tell your mouth to chew and your throat to swallow. Despite that, she managed to polish off two eggs, toast, hash browns and a waffle.

Shannon is coming to acceptance, too. She lets us wipe her mouth if she can't feel the food on it. She lets us get her in and out of the wheelchair and the van. She lets us help her with her eye patch. She lets us read to her. You an imagine all the other things she needs help doing. She told me, "this is pretty awkward". No kidding.

Sunny the Wonderdog continues to make us smile. Today we were soaking up some sun outside our apartment and Erin was pushing the wheelchair a little too fast for Sunny's liking. Sunny tried to protect Shannon by pulling the blanket off her, and in the process almost pulling Shannon out of the chair! The girls made it into a game of taunting Sunny and Sunny was happy to play her part.

The wheelchair we are using now is just a loaner from St. Jude's. It's not fitted to Shannon and not one she can propel herself with only one working arm. We will get her fitted for that next week and hopefully we will have it before too long. Right now, Erin likes to be in charge of pushing the wheelchair, but I think Shannon will be glad when she can propel herself. We have some thinking to do about how we will navigate things when we get home. A split level house built in 1984 certainly isn't ideal.

Some of these worries - at least the financial part - were taken care of by the fundraiser the RAC did for Shannon yesterday. Such a wonderful effort by my employer and my fellow tennis pros. Dan and I were amazed at the faces we saw in the photos - friends, family, and even the girl's bus driver showed their support and made donations to ease our burdens. Let's just say, Shannon can pick out the most mac daddy wheelchair she can find. Saying thanks doesn't seem adequate, but it will have to do...

Hard to believe that we will be home in a week. Shannon's deterioration will be hard for all to see, but I know family, friends, classmates and teammates are anxious for a chance to see us, to see Shannon.

The Rebels won again today. They improved their record to 12-1.

It's going to be a different kind of Christmas this year.