Living with someone who has a chronic degenerative illness is like being in the eye of the storm. We get up every day and go out with the intention to live our lives with purpose. I might be able to forget to not pay attention to how much Libby has eaten, whether or not she has any skin breakdown, how many times she has gone to potty this week because we are busy living. Meanwhile so many around us can get caught up in the fact that Liberty was once a healthy cantankerous child, and now her body fights against us in so many ways. So many only see the little body with the crazy hair and are saddened by her physical state. In the center there is a focus and we will just go and go and go and do and do and do. She remains ornery, and we remain determined.
The storm Liberty creates has been building the more her body tries to stop us. After the Baclofen pump surgery in November I have wanted to have a serious talk with her doc about what our forecast is. About what I need to be on the lookout for as far as her health and any deterioration.
During her last appointment with Doctor Hottie, her main Neuro, I asked two difficult questions: Do you have any idea of a prognosis? Do I need to retire early and stay home with her?
He paused, "I am not a fortune teller, but I have to be honest. Years ago, when y'all first made it to me, she was progressing so fast, that I didn't think she'd make it this long. She's twenty now and is somewhat stable. Her Dystonia and Parkinson's will continue doing what they're doing, but overall she is stable. What you've been living through lately isn't borrowed time; it's bonus time."
"Well, okay. Guess I won't sell everything and head to Disneyworld."
"You two already keep her busy and going, and if there are some bucket list items then I might start crossing them off. Enjoying this time is important."
He teared up some as he spoke. We continued talking about such weighty matters as if they were the weather. We have to keep her weight steady and try to get her to gain some. This weight loss is an issue that comes along with the Parkinson's and Dystonia package. She is so tight/spastic, that she burns way more calories than we can get into her. We do try to get more in. And we keep trying. Her bowel and bladder issues also progress and we are limited in our interventions there. This particular combo is not fun for any of us.
All those years ago during our visit with Doctor Hottie, he asked us if we would rather give her quality of life or quantity. My answer was simple: quality. Always. So this idea of bonus time is a bit of a revelation for me. I'm changing the way I think about the plans we make. I am becoming more intentional about what we can put off for when we can afford it and what needs to happen much sooner. I have moments where I am scared, but they are brushed away into the storm doesn't really concern me. No time for fear- there is too much to do.
With this time we will go to the Canyon and hike with her. We will find ways to get her to her favorite mountains, and hopefully to the ocean. Don't get me wrong, we don't have a countdown clock and there is no depressing doomsday. We are going to focus on the extra special nature of the blessing that is this day with our Liberty.
