"When I’m an Adult, I Will Walk"

Do ducks swim in their own pee?
Are babies even real? Or just pretend?
When I’m an adult, I will walk.

This was all within 5 minutes of pulling into our driveway after driving to and from one of her daily therapy appointments.

When I’m an adult, I will walk.

Well, my love, I said. You know, you can still use your wheelchair when you are an adult. That’s okay too.

No, I’ll walk. I’ll grow and I’ll be strong and I don’t want my wheelchair. I don’t like it.

My child is vocalizing her differences

Okay. Crap. My 4-year old is starting to recognize her differences and vocalize them. I have not been looking forward to this. And I’m not ready. I don’t have the answers ready yet? I haven’t done this before.

Also, it is the third time this week. A few days ago, we were at a wonderful accessible park and a little girl came up to her, maybe 5 years old- looked straight at her and said:

Why are you in that? Don’t you know how to walk?

Emma looked at her...and silently and swiftly wheeled away.

Responding to comments from others

My inner dialogue: Get out of here, kid. Where are your parents? Do you have even one book at home with one kid in a wheelchair? Nothing? Agh!! Why is this my job?

My external dialogue: Hi there!!! This is Emma...uh...she likes dinosaurs. wWat do you like? Do you two want to play?

Okay...good job Erin. Introduce, find a shared interest, move on.

And this...it’s small stuff, right? But it just freezes me. How do I respond? How do I help other kids learn and understand? I don’t want Emma to have to be this example in their lives. It should not her burden or responsibility.

How do I tell my child about SMA?

How do I help Emma understand? She knows she gets her “strong girl medicine” every 4 months. But I haven’t told her she’s different, that she has SMA. I don’t want to tell her.

It was the worst news I had ever heard in my life. It was the worst thing I’d ever had to tell my husband, my parents, my siblings. And now, years later...I’m going to have to tell her. Great. This really sucks sometimes.

Support from others in the SMA community

How will I navigate this? I am lucky, there is an amazing community of other SMA parents that have gone through this before.

I’m seeing a few of the other mothers next week at a retreat and I cannot wait to ask them. What did they do? What do they say? I will literally take notes, likely through tears with a giant glass of wine.

Because as time has gone on, I’ve learned that having SMA, it’s not the worst. It’s not this scary unknown world to me anymore. She is capable of many great things, and she will have SMA. Those two things can co-exist.

And it’s our community that has saved me and guided me through every hurdle we have had through Emma’s journey so far. I lean on them, and when someone needs it...they can lean on me.

Supporting my child no matter what

Her little voice from the back seat keeps echoing in my mind.
When I’m an adult, I will walk.

Okay, my girl, I will be right there beside you.
Wheels or walking. No matter what.