Day 121

I hate 121st days. I don't think it's too Pollyanna-ish to say I'm a pretty happy, positive, light-hearted person 98 percent of the time. But gosh, does that other 2 percent hurt. (Excuse me while I grab a Kleenex.)

I describe 121st days as the one day every four months or so when I suddenly realize that our lives have been permanently altered, and that I'll never hear the words "Myotonic Dystrophy," and wonder what it is, because I know. It affects the dearest person in life to me, and I. hate. it. I hate it so, so much. And I'm not going to lie, for at least a couple weeks after Evan was diagnosed, I very strongly disliked God. I remember sitting in church the first weekend after that awful day, my eyes smarting with tears at every reference to a loving God, and I clenched my jaw so tightly during the service that my teeth hurt. But I've moved past that. God has to be love, because there is Evan.

We've never attended one of the local meetings about Muscular Dystrophy. We haven't flown to one of the yearly conferences in California or Minnesota. We haven't participated in a walk. (Though we plan to next year.) I thought we didn't need them. The first e-mail I got inviting us to a meeting said the featured speaker would be discussing ways to make your home wheelchair accessible. I deleted it, thankful that we didn't need to worry about anything like that. I've been on the web sites, and read posts from people whose children or siblings or parents require feeding and trachea tubes and a lot of other medical equipment. And again, I've been so thankful that I don't know what any of those things are.

We're lucky; whenever we go to the children's hospital for a doctor's appointment, we get to walk out an hour later.

But yesterday was a 121st day. I was on Facebook, and a woman I've never met but know because her teenage son has Myotonic Dystrophy sent me a chat message saying that her friend's son is doing badly. I replied that I was sorry for the family. Then I asked how old the son is. Nineteen. And he used to be fine. She added that her son's half-brother is now on a feeding tube. He's 20. As a child, he was doing so well that he almost wasn't even tested for Myotonic Dystrophy.

That's the part of this disease that no one understands, and that I try not to think about. It doesn't get better. It doesn't hit some magic plateau. It gets worse. The last 121st day was the day we took Evan to his six-month neurology/MDA check-up. After listening to Evan chatter and play with the little hammer that proves he and I have zero reflexes, the doctor suddenly asked if Evan was having any trouble opening his hands. Surprised, I said no. The doctor nodded and said that was good--maybe it'll be more difficult for him when he's five. Five.

When someone you love is hurting, the immediate response is to make it all better. Put a bag of frozen peas on it. Grab the cutest band-aids (around here, Mater and Buzz Lightyear) you can find. Cuddle and kiss and hug.

But when the scrape is on your heart and not your knees, sometimes you just need to cry.

During our five-and-a-half hours at the playground yesterday, I told one of my best friends what I'd heard about the two young men with Myotonic Dystrophy. Disbelieving, she said, "But that won't ever happen to Evan. He's doing so awesome, and his *count--that number that shows how much he's affected--it's pretty low. Right?" Her reaction was that of a best friend--loving me and loving Evan, and not wanting us to worry or be hurt. Handing me a bag of frozen peas. And she was right on some level--Myotonic Dystrophy is such a weird, variable disease; a little girl with a repeat of 900 may be talking her mom's ears off, while a 15-year-old with a repeat of 750 can't walk. *(In Myotonic Dsytrophy Type 1, there's a repeat of the triplet cytosine-thymine-guanine (CTG) in the DMPK gene. The average number in a healthy person is between 5 and 37. Evan's repeat is 850. Individuals with larger expansions tend to have an earlier onset of the disorder and more severe symptoms.)

But knowing someone who knows two kids whose quality of life has been severely affected by the same thing Evan's dealing with...it doesn't just hit close to home. It shatters the windows, and makes you lose of little bit of hope.

I'm not about to say that the heartache I feel every 121 days is any worse than someone else's, because in so many ways, we are damn lucky. Blessed. I know that. But once in a while, I wish we were part of a bigger group. Every April, Race for the Cure brings together thousands of women dressed in pink boas and ball caps, and there's such a feeling of camaraderie in the air--this sense of shared triumph. The ones who've succeeded reach out to those who've just gotten the most devastating news of their lives, offer a shoulder to cry on, and say, "I understand." "It's okay; you'll get through this." "You're not alone." I'm not saying I wish we were a cancer family instead--just that there were more people around who could relate.

Because until you're forced to join the club, you don't understand; not really.

Fortunately, I've found two amazing moms who understand exactly how this life works. Unfortunately, one lives in Arizona, the other in New Zealand. Worlds--and an entirely different day--away from Indianapolis. God bless the Internet and Facebook, which brought us together and helps us maintain our own three-person cheering squad. We exchange e-mails and cards and the occasional phone call, and a lot of encouragement and hope, which I needed in spades tonight.

And once again, the simplest little thing made me feel better.

Evan and I were sitting on the couch, watching Taylor Swift sing her latest single at the CMA Festival. Long over the dislike I felt for her before she saved me from Binky Hell, Evan and I clapped along (okay, so he made me clap), and I showed him how to make her signature two-handed heart symbol. And I took him in my lap and said, "You know what? You are the best thing that's ever been mine." And he confidently replied, "Yeah."

And starting tomorrow, for the next 120 days--or maybe longer this time--we are going to keep living it up. Stay at the park for five-and-a-half hours. Because none of us know what's going to happen from minute to minute. I don't want to waste today wondering and worrying about what might happen in 10 years. I could be hit by a watermelon truck tomorrow, and I want to go out loving and laughing. Because while I'm here, I have the best little boy God ever made. As Nate simply says, he's a blessing. And if I love him so much that three days out of 365 I worry too much about the future--even if I have a valid reason to cry every once in a while--well, I guess I need to learn to leave that up to God, and let him give me hug, and a heavenly bag of frozen peas to hold on my heart.