Birthdays

Birthdays. They are a celebration of life. But for a DMD mom, every birthday hits a little different. Every year that ticks by means one year of muscle waste and one more year away from a cure. Liam is 8 tomorrow. And, 8, as many of us know in the community, is particularly hard because it ages us out of lots of trials.

Though, I hear there’s one for older boys coming our way, just hope we stay ambulatory long enough to get there.

I haven’t written a lot lately because honestly, I’m struggling. Thanks to COVID-19, the trial we are lined up for was delayed so we had to unpack those suitcases filled with our clothes for the months we would be in Boston, filled with that tiny spark of hope. 

Then, my Grandma LaFlash passed away, which was a hard thing on my entire family.

And, then I lose my job.

So, it just feels like I’m a carton character with a storm cloud directly over my head.

I’m turning 40 next month and I feel like a failure. I’ve gained 35 pounds since Liam’s diagnosis. I will officially not have a job a week before my 40th. And, all this fighting for Liam and I feel like it’s getting us nowhere.

I know that’s not true. We have a great doctor. The steroids are helping him a lot. The stretches are helping a lot. The night splints are helping a lot. His diet looks good, so we’ve curbed the weight gain. We moved and he’s gained so much independence with the bedroom and bathroom downstairs. 

We added our first support bar in the bathroom. It felt hard, but it’s helping him.

The crushing guilt of feeling sad on his birthday sucks. He’s so excited and I want to be excited too. He can’t have a party, another COVID-19 thing because selfish people can’t put on a damn mask to stop this thing. But we are going to make it special.

We are going to reflect on him – he is more than this disease. Liam giggles so hard and loves even harder. He loves bacon and eggs and mashed potatoes and McDonald’s (even though we can’t go that often). Liam hums, sings and dances to the music in his head. He builds Legos and loves to watch Roblox videos on YouTube. He would go anywhere with me, do anything with me. He is a momma’s boy. He loves to chat– Collin and I call him chatter box. He loves his brother, adores his brother, even if Logan often doesn’t feel the same way. He loves his sister even more. She calls him “Bubby” and has since he was so little. He enjoys swimming and riding on his hovercraft go-kart thingy.

I hate that he’s going to be cheated on life. I hate it so much. But we are going to keep fighting. We aren’t going to give up on him or on all the boys who are fighting this disease.

Happy birthday Liam. Just know mom loves you so much it hurts. I’m here with you. I’ll stand beside you. I’ll lift you up. I’ll support you. We will fight for your life together.