Cole Leighton is my light. My world. My shining joy. I cannot imagine my world without him.
Cole is my firstborn child ... and my only son. (Besides Cole, I have two daughters: Isabella, 6, and Paisli, 4. Cole is eight; he'll be nine next month, on the fifth of January.) My girls are both healthy; Cole, on the other hand, is not.
He has Duchenne's muscular dystrophy. He was diagnosed with it when he was two; he's not expected to see his twenties. I try not to think about that; I try to think about the here and now: it's much easier that way, although I know I can't help it. His form of MD is fatal and eventually he is going to die, but patients who have MD are living longer, thanks to advances in treatment and help from organizations like the Muscular Dystrophy Association, who have been a godsend.
Right now, Cole can ambulate, but he wears braces on his legs and uses crutches (forearm). He gets around very well and nothing really slows him down. If he falls, he just laughs, and gets right back up. He is extremely active and always has been.
Cole is my Little Miracle Boy! I love him so much!!
When I got pregnant with Isabella and Paisli, I was scared that they would have MD, but both girls' tests came back negative, which has been a huge answer to prayer. They are very good and loving towards their big brother and seem to accept him better than most ofher people, including adults. If anybody is found pointing, staring, or whatever about Cole, Paisli and Isabella will be quick to defend Cole. Both have a compassionate heart towards anybody, especially adults OR kids who are disabled.
They understand about disability because their big brother is in a wheelchair sometimes and they think it is neat because Cole will give them rides in his wheelchair; Paisli and Isabella seem to think it is great fun!
Tonight, our family is going to see the annual Parade of Lights and Christmas Fireworks Extravaganza, which is going to be held here in downtown Nashville. I will have to make sure I bundle up the kids extra tight so they don't get chilled or (God forbid!) sick. I know they will enjoy the parade and seeing Santa; Santa will be lighting the Christmas Tree and seeing and talking to little children before the first fireworks go off.
We have to go. My husband is running one of the concession stands. He will be manning the booth that sells hot chocolate and donuts.
Cole already knows what he wants for Christmas: for his best friend, Tyler, who has Harliquin syndrome, a very rare skin disorder, to get better. (Tyler is currently in the hospital with pneumonia. He is in the PICU at Vanderbilt Children's Hospital.) I asked him if he wanted any toys or games: he shook his head no. All he wants is for Tyler to get better.
Such a big heart! That is just the type of kid Cole is: always thinking of others before himself. If there is anybody who lives Christmas all year long, it is Cole because he has such a giving, generous heart!
I certainly hope that Santa brings Cole something extra special for Christmas, for thinking about Tyler first before himself or his family!
Well, we have to get ready if we want to be there before the parade; that starts at six. I will write in here again another time; until then, this is Carol Meisterhoffer saying so long; I hope you enjoyed reading about Cole! Cole is certainly something special and I am very glad to be his mother! Cole is a wonderful little boy!!
~Carol, Cole's mom (and also to Paisli and Isabella). :)