Stealing Liam’s Dance

Visit https://www.cureduchenne.organd http://www.parentprojecmd.org for more information about DMD and how you can get involved.

Liam dances to his favorite tune. Liam dances when there’s no tune at all. Liam bumps his booty in the grocery store. Liam boogies when he’s had too much purple Fanta. (Only sparingly, don’t judge me!) And, most of all, Liam “shakes it like a polaroid picture” when he’s got so much joy in his little body that it can’t possibly be contained inside one tiny human vessel.

Maybe you can imagine, or more than likely you can’t even imagine, the day when we were told our little chocolate-brown-eyed, chicken-nugget eating six-year-old boy’s legs would some day stop the dance because of a genetic disease – Duchenne Muscular Dystrophy (DMD).

For those of you who don’t know or only briefly recall from an old Jerry Lewis telethon, this disease is a nasty one that wastes away the muscles, stealing away your ability to dance, walk, lift your arms, breathe, swallow and keep your heart beating. DMD mostly affects boys.  You can look it up, but grab a few tissues because it’s horrible to see what this disease is doing to so many young boys. I’ve spared you some of the details but to sum it up, it sucks, it sucks hard.

I knew first.

It was a beautiful Texas Tuesday. I was working from home with Oliver and Olivia, who were doing their best to distract me (picture to the right), when the phone rang. It was the school, so I picked up thinking I would have to take off my Christmas pajamas (yes it was February – but they are fuzzy pants in my defense), put on some real pants and go pick someone up. I have three kids at the same elementary school, so it’s common to get a call from school about one thing or another.

It was Coach calling to say that during gym period Liam was struggling to get up on a balance beam. As a clumsy person (I spilled not one but TWO cups of coffee just during a volleyball game and got caught in a net – a story for another day), I thought nothing of it. I rang my pediatrician who said, okay, let’s see him. We always joked that Liam had his own pace and we often waited for him to do things it took the rest of us less time to do. I sit in a lot of regret that I didn’t think more of it then. Never in a million years did I think anything was wrong with him, not like this. But in reflection, some of his quirks were actually signs of this screwed up disease.

I’m a worrier but this time I thought maybe he had a sore muscle or maybe he was injured. Of all the things I worry about – my husband can attest there’s a long list – I never once thought his not being able to do something in gym would change my entire life. Collin, that hubby I mentioned, said ahh it’s nothing, just take him in. So, I took him in Friday morning.

Four words changed my life.

“I think it’s neurological.” 

I frantically googled while managing to compose myself enough to get out of the door after she said those words. She referred us to a neurologist, told me to call them as soon as possible as their waits could be months long. I knew then I was going to call from the parking lot. As I waited to check out, one the first things that popped up on google was a video of a boy getting up off the ground who had DMD. And, I knew. At that moment I knew. 

We were able to get an appointment that Tuesday – yeah that was a horrible weekend of compulsive web searches, not sleeping and tears, lots of tears.

I don’t remember much from that Tuesday appointment, but a couple of things stood out.

1. The doctor looked at the nurse practitioner while feeling Liam’s calves during the physical exam and said in sort of a whisper – “that’s not muscle.” See with DMD the boys get a thing called “fatty calf.” As their muscle fiber deteriorates, it’s replaced with fat cells, so they tend to have thick calves, something I had researched extensively and obsessively. I spent hours looking at his calves, feeling his calves, trying to convince myself I was wrong. And, a split second in the doctor’s office they confirmed my suspicions in sort of a callous, uncaring way, like two researchers. I don’t think they intended to do this thing, to be honest, I just think they assumed I had no clue what they meant when they exchanged those small words. Small words with such a big emotional impact. I’ll never forget it. 
2. The doctor explained that they would need to run two tests – one for his Creatine Kinase level. Know I’m not a doctor, but the test measures the amount of the CK enzyme in the blood. Simply put, advanced amounts of CK indicates muscle damage. And, the second, he handed Liam a purple or some other bright happy color cardboard box. This box he would need to take down to the lab so he could do genetic testing. The thing that plays on repeat in my mind like a bad movie scene is watching his face when he got that pretty box, when he asked me if he could open his present. He thought that little box contained a gift, a toy of some sort. His brown eyes were shining and he was smiling so big when the doctor handed it to him, and it crushed me. It still crushes me when I picture that moment in my mind, over and over. I sat outside crying in my Dad’s arms when Liam, excitedly, went in to give blood to get these tests that would determine the rest of his life. And, he came out, after giving blood, smiling ear to ear. He told me he was the bravest boy in the room and he didn’t even cry. I couldn’t bear it at that moment, his absolute joy when the world was crashing down around me. I just pulled him in and held him so tight, my tears falling on his dirty blonde hair. “What’s wrong mommy?” he said, and I just said “I love you so much baby.” I had no words, only grief.

So that’s the first part of our story. I don’t know if I’m writing this for anyone really or just documenting this for me and my family. Share if you want, read if you want, comment if you want, correct me on my bad doctoring. I plan to share our journey here, and I’m a little behind. I’ve been a professional writer my whole life. Words put a roof over my head, yet it’s taken me almost six weeks to find these words, and I’m still not sure they are the right ones. They are raw. They are real.