I get that everyone's lives are uncertain. You just never know if today, or tomorrow, or 90 years from now will be all the life you get. With a diagnosis like Charlotte's there is a lot more certainty that her life will be short, and she will have far fewer abilities and opportunities than her peers. A typical person is advised to live life to the fullest because who knows when life will be taken away. But what do you do when you know? What do you do when you know better than most people when? And you know better than most people how?
This information has, of course, changed our lives. We didn't know anything was wrong. This was a huge surprise. Most parents of children with MD have suspicions that something is wrong. Many children with MD are late walkers, if they learn to walk at all. Charlotte wasn't. Many children with MD are cognitively delayed. Charlotte isn't. Most people are searching for something to explain why their child isn't meeting milestones. We wanted to know why her stomach hurt, immediately, and all of a sudden, and so severely she was shrieking in pain. This didn't, and still doesn't make any sense.We have had to think about her future in ways we didn't plan. Sure, this is something all parents do. They make adjustments; our kids are never exactly who we expect them to be (probably to spite us). This was different. This felt like her whole future, any future, was off limits. Will she ever reach adulthood? Will she be able to go to college? Follow her dreams? Or will her dreams need to be re-evaluated to reflect how little she will be able to do on her own.
Because right now, she is "big". She fills a room. She does for herself. She accomplishes. She is normal. She can do normal things. Until she can't. And then her life will be more "can't" than "can", and loss than gain. And our perspective will have to shift from "can't" to "can still do some things". And I hate that. I hate that to survive this, I will have to celebrate things we haven't lost yet.
So, yesterday. I signed her up for ballet. She is just barely old enough, and I am biting at the bit to get her enrolled because I want her to have as many days of "can" that she can. I want her to experience normal just a little bit. However, I know that soon, too soon, it's going to go away. We aren't living in the moment, trying to pack as much life into each day as we can. We are trying to pack a whole life into a few years, because we don't have uncertainty, we have knowledge.
They say "it's better to have loved and lost, than to never have loved at all". I hope she sees it that way too. I hope that she's happy she got to dance, and knows that I was trying to give her something before she couldn't have it anymore. But I don't know. Is it cruel to dangle normalcy in front of her? To give her something that I know she can't keep?
I don't know. But I guess we have to try. I guess we have to believe that losing something is better than never having it. And that she's so excited about it right now that she refuses to take off those adorable little slippers. I wonder if it's irresponsible to do it. Especially since we know it won't last forever.