Six Years

My Number One Son has the best Number Two. My younger son had to research a disease or illness for Health class, and he chose to learn more about MD.

I “celebrated” six years on WordPress this week. Somehow I’ve written 347 posts prior to this one. Writing provided the cheapest form of therapy I never wanted to need. You don’t get to pick whether or not your child inherits a progressive neurological disease, and trust me, NO parent would pick that. Six years ago, that doctor looked me in the eye and told me that my son has muscular dystrophy. I thought I’d never recover from that shock, but here I am six years and 348 little stories later.

Today was my son’s last annual neurology check-in and check-up as a chronological child. His doctor today reminded me that should my son choose, I may not even be invited to this appointment next year! I can still see his eleven-year-old face as he underwent the first of those strength and resistance tests. I can see him sitting beside me, asking why my face looked funny, contorted in my futile attempt not to cry. I can see his little face, and brother’s even littler one, each asking if muscular dystrophy meant he was going to die soon.

Today, he is stable, and in this unstable world of ours, that is a celebration.

He keeps his diagnosis close. Since the first days post-diagnosis when he told a few of his middle school buddies, he’s told no one. No one. He rarely talks about it even to his dad or me, and I worry that the weight he carries inside takes a toll. Keeping a secret is exhausting work, but I don’t know his MD story; I can only know mine.

He shared with me that he “came out” to one of his closest friends this week, and relief is the only word I know to capture how I felt. Letting even one new person in, a person he trusts to keep his secret safe, is in line with an Everest summit bid. Maybe to you it seems like one step, but from my view, yeah, it’s that big a step for him.

Though today’s was a good one as they go, I hate these visits. As you’ve learned about me over these six years, I don’t manage anniversaries well. In my twisted, little mind, every significant calendar space is highlighted and circled, underlined and in bold with lights flashing around the date, and today felt no different to me. It hurts, still, just having to be there, knowing that something in the way my DNA combined with his dad’s at that burst of a microsecond in time resulted in my son having this rotten disease. Fate, genetics? Whatever it is, the story always ends with guilt.

Turns out, this kid is stronger than me.

8 thoughts on “Six Years

  1. Wendy, my heart goes out to you and your family. What a heavy burden to carry! I am glad you found this blog to share your thoughts and I see much strength and grace in the way your family continues to handle this reality. And now the title of your blog makes sense to me. Well chosen. Well written.

    Liked by 3 people

    • Thank you, Tara! Writing has truly been my therapy since the start. I’ve been fortunate to have found comfort in community here, and met people I’d never have known otherwise. I’ll never be glad of MD, but I’m glad it’s returned something good to me. Your kind words mean a lot–thank you!

      Liked by 2 people

  2. Kids can be so strong and resilient even when we’re not–I’m always amazed at my daughter too. Congrats on 6 years! You know, I started my own blog as a type of therapy and hit 6 years myself a few months ago–guess we’re in this for the long haul!

    Liked by 2 people

    • I wish I had the discipline and humor you have in your writing, though I’m also thankful to have what I have in my little project here. Congrats on your six years–I would be lost if you weren’t in it for the long haul now. Sundays just would not be complete otherwise.

      Liked by 2 people

      • I’ve been blogging for six years, too. I didn’t start it with a consciously therapeutic agenda — it was only meant to give me something to do after my career imploded — but as I’ve gotten better at it, it’s been the gift that keeps on giving. But if I’ve gotten better at it, that’s because I’ve modeled my posts on the kind of personal (often courageously self-unflattering) candor you ladies embody so gracefully!

        Like

  3. It’s hard to believe it’s been 6 years. You’ve been through so much and you’re still standing. You’re still a light. I admire your perseverance and strength. Being able to admit when you’re not strong shows your humanity and vulnerability. You keep putting one foot in front of the other for the good of your family. You’re a brave lady and you keep putting good out into the world.

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.