| |
I Am Just a Momby Sarah Strong I’m a mom—just a mom—and that's ok with me. I have a child—just a child—and that should be ok with everyone else too. But I see the stares, and I hear the comments. "Mom, what's on that kid's legs?" I see the older folks who give me sly looks when my big 7-year-old son pleads with me to zip his coat for him, and I stand there and say, "Honey, you just need to try to do it yourself," knowing in my mind that they have no idea the daily struggles he goes through and how much I don’t want him to give up yet. I hear the white-haired ladies sitting together on a bench at the mall whispering, "Isn’t he a little big for her to be doing that for him?" I see the looks of pity when I take him to Kids Yoga and the other parents notice him taking his leg braces off to participate. But that is me, the mom. The child, Wyatt, doesn’t notice these things and that makes him one GREAT kid!
Wyatt thinks his braces are cool. He just got brand new bright yellow and orange "solar" designed AFO's. He thinks that Jason, the guy from our local prosthetic business is one really cool guy who can do magic on his braces, and he can’t wait until summer when he can wear shorts outside so everyone else can see how cool they are. A highlight of Wyatt's week is going to PT and hanging out with his friend Emily, his therapist who lets him play with a gameboy while she gives him an awesome massage and then plays really cool exercise games with him. This is what Wyatt sees. Wyatt also sees that other kids don’t hurt the same way he does. Wyatt knows that other kids don’t have to struggle so much just to put a coat or boots on or simply go to the bathroom. Wyatt knows that he isn’t the fastest kid on the block and he knows why. Wyatt knows he has CMT, and it still makes him one GREAT kid!
Wyatt was diagnosed a little over a year ago by our pediatric neurologist at the Mayo Clinic in Rochester, MN. We were pretty lucky. We already knew that his Grandfather had CMT, so we got the blood test, waited the very long month that it took to get the results back, and then got the official word. This is why. This thing called CMT is why he has struggled.
By the time we got the results from the blood work back, he had already broken in his first pair of AFO's. He had just turned 6 years old and he needed details. Wyatt likes details. So I turned to the CMTA website, and found some awesome resources that helped me explain what CMT is to him.
One of his first questions was, "Why do I have to wear things on my legs if this disease is about my teeth?" That made us all laugh once we explained where the name came from. I have to agree...it's a pretty silly name for a disease.
Wyatt understands CMT better than I could have ever imagined he would. Wyatt doesn’t get angry the way I get angry. Wyatt doesn’t feel the stares, only I do. Wyatt's heart hasn’t broken yet the way mine has for him. I'm his mom. I get angry at CMT. I feel helpless and disabled, not Wyatt. The great thing is that if I don’t let this monster called CMT attack me, then that monster does not get a chance to attack my son.
I may hear the whispers, and see the stares, but I am a mom, I can ignore them. I am determined to ignore them. Therefore, they don’t even phase Wyatt. If I get excited over new braces, Wyatt gets excited over them. If I love Emily the therapist...then Wyatt loves Emily. If I make it fun to go to kid’s yoga...then who cares what those other parents think, those parents who have no idea what it’s like to wear AFO’s or need help zipping a coat. I have a superpower. It's called being a mom. I am just a mom, and I’m ok with that. |
CMT Awareness Week—Sept. 19-25, 2010
