Dreams

“Mommy, I’m going to play baseball when I grow up,” Liam says with a big smile. He lost one of his teeth in a cart incident at Lowe’s. They had to remove it while he was under laughing gas. Luckily it was a baby tooth, but it caused one of his teeth to be much longer in the front. YES, it’s freaking adorable.

I’m usually pretty good in front of him in these situations. I’m not going to say, you’ll never play baseball baby. I say, let’s sign up for spring. He’s walking now. He’s running still. The doctor said he can play baseball. I don’t discourage what we can do, now.

But “grow up” got into my brain like a worm wiggling deep into the thick soil of my emotions. It’s comfortable there, eating away at the small pockets of joy I’ve finally found despite this horrible thing. I try to think of these things in context. Most boys aren’t going to grow up and play baseball beyond their school years. Maybe they will for a stint, but the likelihood of such things turning into a lifelong career fame is rare. I wanted to be a New York Times best-selling author or a Pulitzer Prize winning journalist but have greater odds of being struck by lightning. So, in a context that works for me, childhood dreams aren’t always going to become reality.

But then it hits like a punch in the face, all I want for Liam is for him to be able to grow up. I don’t give a shit about baseball, I just want him to be with me.

See, Duchenne is a ticking clock. And we just want to do everything in our power to slow that clock down. That might look like seven pills in a morning for a 7-year-old but damn I’m going to do everything in my power to slow that clock. It’s so incredibly hard to juggle that “live in the now” when it comes to stuff like baseball, but then in the next breath you’re in a doctor’s office living in his future.

So, we must live in the now, while making major life decisions that impact his entire life. Live in the now but apply for social security for his future medical needs since the wait is like 10 years. Live in the now but give him medicine that long term make his bones brittle. Live in the now and give him 10 minutes in the bounce house when you know that could break his leg and he might never recover and walk again. Live in the now knowing you can never make his dreams come true.

I’m haunted by the strangest things at the strangest times – while watching a TV show, or sitting in the dentist chair, or sweeping the floor. Will he know love? Will he ever even get to have sex? Will he know what it’s like to have children? Will he be able to ever live alone? That’s the worm finding its way into every thought.

I shared some space with some important people in my life this weekend, and I was able to find some peace knowing they are by my side in this, helping me find light and joy in this new and hard life.

That’s what I ask of you, even if you don’t know us.

Think of us next week when we are at our clinic visit in Boston. If you pray, pray. If you send healing vibes into the universe, do that. Meditate about it. Do anything and everything to lift my baby up next week. This is going to be a long journey and we need all the light you have the energy to give.