Don't Ever Grow Up!
Celebrating birthdays for a child with Duchenne is bittersweet. Caleb can’t wait to turn 5 tomorrow, October 28th.He has been talking about it for months and he has this idea that you always get the same number of presents as the age you are.He told me that Minnie is picking out 5 Lego sets for him. When I ask him if he wants an item for his birthday, he says “I already have 5 coming, maybe when I’m 6.”He has memorized the birthdays of his classmates so that he knows the order of who comes next until it’s his birthday again.He loves his birthday, the cake, the presents, the party, the attention and everything in between that comes with having a birthday. He says to me “So when I just wake up on Sunday, I get to be 5?” in disbelief.I respond, “Yes baby, I can’t quite believe it either.”
I’ll let him eat more sugar than he should have and take a break from his braces. We will have a party and he will smile, laugh and show extraordinary amounts of joy. And we will smile and laugh with him, but deep down I feel so much pain because our time is too precious. Parents, in particular mom’s, often talk about how sad it is to have their “babies” grow older.But when your “baby” has a progressive muscle disease, the thought of your “baby” aging is real.It’s not “I just don’t want them to grow up” but rather the opposite, “I just hope they get to grow up.”
We got to be the “lucky” ones the past year to talk about Caleb in the world of Duchenne because he is so young and mobile and relatively pain-free. But as the seconds, minutes, days, months pass, I cringe a little bit more each day. I still stop and relish in the beauty of my boys and their happiness, but it feels like I have this crystal ball that shows me what their life is going to look like, but they know nothing about.And each second, minute, day, month that passes, we are closer to what we have been told that life will look like.
I want to freeze time and love the shit out of my “babies” until I go, not them. But then I’m taken back to reality, I shake myself out of my dreams and pick up where I left off. I can do this, they can do this, we can do this. Happy Birthday Caleb, may your dreams come true. You deserve nothing less!
October 27, 2018