Tonight, as I sit on the couch listening to the dogs play and The Proposal is on the television in the background, the realization that I have four weeks left of pregnancy hits me. Which means that I can no longer ignore the facts: I have Charcot-Marie-Tooth, and I know nothing about how it could affect my daughter.
In case you're not my friend on Facebook, or you never read the article I posted to my wall, here's a little background on CMT. This is a hereditary disorder, made known by foot deformity, drop foot, weird walking, balance issues, and a weakness of the feet (and later the hands), among other symptoms. There are different types and subtypes of CMT, each having a different cause and different characteristics. There's no cure, but I have the option of wearing AFOs, or leg/ankle braces to make me look more normal as I walk. The disorder is progressive, and it does nothing but get worse until around the age of thirty. Fun, right?
As my pregnancy has progressed, I've been to the emergency room multiple times because I've fallen. I've been to physical therapy, and received a cane to help me walk. I've moved my bedroom and the nursery to the first floor of my house so I can avoid carrying my fragile newborn up and down the steps--my worst area to maneuver. I went to the Perinatal Center of Iowa to try and determine the probability of my daughter having this disorder. But because my specialists don't know the severity of my disorder, they could give me no answers.
So now I'm thirty-six weeks along, wondering how I'm going to be able to protect my daughter from the bullying, the humiliation, and the problems associated with having a disability. But at the same time, I need to prep myself on how to show her the beauty hidden in having this issue.
On the con side, gym is a nightmare. My gym teacher didn't understand the concept of disability, and I used to go home to my mother (even as a senior) telling her I didn't want to go to school because it was so horrific. (Moment of honesty, the only reason I graduated a semester early was to get out of gym class--it was that bad.) In my experience, I was perfectly capable of having great grades, but I was in a constant fear of failing gym solely because of my 'lack of trying hard enough'. Which leads me to my next point...
Athletics? Pretty much out of the question, depending on the severity. I can swim, I can ride horses (with my AFOs), I can walk (ish), and I can throw a ball. But anything dealing with balance, running, or jumping? Count me out. I used to run the beginning of my mile in gym so that I could try to look normal, but then I'd hear a loud CRACK and my ankle would give out, leaving me on the ground. No one with CMT has good balance, making even yoga hard. Which really sucks, by the way. I was looking forward to pregnancy yoga! Track and field is a nightmare, unless I do shot put (or whatever) or discus. Everything else just sucks.
Heels are NOT happening. You will never find me in any dress shoes whatsoever unless they're boots or new Converse. I wore Converse to prom, I wear Converse even now. I once put on two-inch heels due to my sister pestering me, and it probably could have broken a world record for how quickly I was down. This has never bothered me, though, because I don't see the enjoyment in heels anyway. Give me a pair of boots and I'm good. My sister though, she'd die without her heels! So I can only hope that Baby has my fashion sense.
I hate walking anywhere. Even at Wal-Mart or Hy-Vee, I prefer to push the cart to avoid falling. I need something to hold onto at all times, and if I don't have that, I'm screwed. I once had a boyfriend that would hold my hand everywhere we went, giving me some support no matter where we were, for which I am grateful. But now, with a toddler and a baby on the way, holding hands is out of the question. I'm busy holding the hand of one child, and I'll soon be busy holding the handle of the carseat with my other child. (Or not, because I'll be too terrified of falling.) I rely on carts, canes, and as of tomorrow, a walker. As of Saturday, a wheelchair being given to me. Long walks, hikes, or brisk paces will result in a very sore, very tired child once the disorder kicks in, and pushing her faster than she's comfortable will do nothing but hurt her.
But there are some pros to CMT. Like the fact that I realize I need help, and I've had to get over my stubborn attitude and ask for it when I need it. Yes, I make Brian carry the laundry downstairs because I have told hold the railing. (You just can't do it with how much laundry accumulates during potty training!) I've had to ask people to adjust their walking pace to meet mine so I can keep up. I've had to watch Brian chase Evee around and do some really fun-looking stuff without joining because I'm not physically capable of participating. But this has given me a new perspective on how fragile the human body can be, and how I need to make sure I do NOT push myself to my stubborn limits, no matter how much I want to.
If my daughter does turn out to have CMT, who else will advocate for her better than I can? I know how it is to have to explain every year, to every teacher, why I may be late to class or why I might show up in AFOs. I know Brian's going to be a great father, but even he won't be able to understand how painful the bullying can be, and how embarrassing it is to be the slowest person on the steps between classes because you physically are incapable of going faster. Only I will know the struggles of gym, of exercising too much; and only I will know firsthand what it looks like to push a CMT person's body too far. My mother did a wonderful job making sure I was taken care of as far as limits, but she hasn't experienced it. I have, therefore I can be my daughter's hero on a level some people will never understand.
There are some pretty ridiculous pros as well. You gain a new self-confidence that isn't derived from looks, because you don't exactly walk in a sexy way. I recognize people by their gait. Some girls make me so jealous with the way they walk. They just look like they should be on a runway, whereas I get filmed for observation every time I go to my specialist in Iowa City. So I had to find a sense of humor! So what if I can't walk right? I can write, I can sing, I can do music, and I'm a lot more intelligent than half of the people out there who can walk 'normally'. This came in handy when people would laugh at me in gym. I just looked at them and remembered who was actually graduating with good grades and not relying on charm and cheats to make it through high school. Another plus? I can get away with being late to class, holding hands in the hallway, and using a handicapped sticker! (For which I'm so grateful. Do NOT get me wrong.)
But as I sit here and wonder what will happen if Baby has Charcot-Marie-Tooth, I can only hope she takes the news as well as my father did when my mom and I burst out of the neurologists office crying. He just stared at us like we were children and said, "So if you're not gonna die, quit crying." I have a mild, if unknown, case of CMT. I do not know what my daughter will have in terms of weakness or severity, but I can give her a new appreciation of disabilities and an empathetic stance toward the 'abnormal.' If she doesn't have CMT, then she'll still be able to grow up with an exposure to a disability that most children do not know or understand, so they make fun of. I hope that if Baby's completely healthy, she becomes a voice for the disabled. If she's unhealthy, she'll become a role model for other children like her.
