Distractions

The one thing that keeps me going lately is my busy life. We’re moving. I work full time. My daughter is an athlete and has a social calendar that moves like a train. My older son is filled with gaming and friends. I have friends to connect with and try to have active date nights with my husband. I traveled and had a great relaxing weekend with one of my greatest friends recently. It was a time to reconnect with her, with some other friends, with myself and even connect with new friends. I laughed until it hurt. I cried in my friend’s arms. It was what I needed. I had guilt issues leaving, but so grateful I took the time.

All of these things makes it hard to find time to sit with my grief. My medicine takes that edge off so I don’t feel like crying all day.

But then it hits, like clockwork, 2 a.m. I wake up in a sweat. I feel like someone sucked the air out of my lungs. This is when I think about feeding tubes and breathing machines. This is when I consider all the things that will be stolen from Liam as he grows older. You want your kids to grow up, but then with Duchenne, you want to keep them just as they are. Growing up means suffering.

I’ve been doing better with these middle of the night panic attacks. But we head to Boston next month, and every Duchenne parent knows with each clinic visit we’re on edge. We see the things happening, but we don’t want to hear that things are going too quickly for our boys. We want their heart to be strong. We want their lungs to be strong. We want all those things that keep them alive strong. We do our best to make it a adventure, to make our boys feel special. But deep down it’s terrifying. We’re even taking a few days in NYC after to enjoy our Christmas vacation as a family.

We’re going in for our six-months post starting steroids check in. I know we have seen him get stronger, have more stamina. We’ve also seen Liam fight through mood swings. Really bad mood swings. We’ve had good days, and really bad days where I just hide in the bathroom from him to cry for a minute while he screams my name. I hate myself for that because I love him dearly. But sometimes it’s too much. Other times, I just lay with him and just let him fight it out in my arms. I fought so hard for this medicine and don’t want to resent it since it’s helping in other ways, at least I hope it is.

I hid my tears at school when I saw one of his posters that asked what he wants to be – and he wrote tall. He’ll never be tall. In fact, we don’t want him to be tall. That small little wish, something that a lot of boys won’t be regardless of this disease, almost knocked me off. It’s like I’m riding one of those clown bikes on a tight rope while juggling. I do it, it almost looks effortless at times, but one gust of wind and it all falls.

Yesterday, distractions were overwhelming me, while moving at anxiety speed to get my house ready, Liam had set up a dance party in his room for me. I stopped everything I was doing, and we danced to Thunder. Collin walked in to see what was the fuss, and just smiled and left us. We dance all the time, Liam and me. Remembering to stop and just have a little fun is a must. Not to derail, but I get a little upset when people put all this emotional pressure on cherishing every moment and making every moment perfect. I am just doing my best to find some pockets of joy, where I can, without all the pressure of finding joy in things other parents are allowed to not enjoy. I just want to find a normal place with this, if that’s even possible. So I’ve learned more to stop, listen, be present for him and all my kids. Not because I need to make every moment memorable or perfect, but because I enjoy them, frankly. They are funny and kind and silly and smart. I don’t want to miss out on that. A friend shared…

Every morning, I crawl into his bed. He has this stinky breath and crazy tussled dirty blonde hair. He’s usually in his adorable little boxer briefs. His eyes are deep liquid brown and filled with such love for me. I just cuddle up next to his warmth, sing silly little songs to him as he lets out this sleepy little giggle. That’s the reason I get up, put on my makeup and let the busy take over, because he deserves a normal life. He deserves a mom who fights for him, who stands with and for him when he can’t someday. I can’t live in grief every day any more, because that’s no life for him or me or our family. But damn, 2 a.m. is rough.