"When I’m an Adult, I Will Walk"

By Erin Courteau

2 min read

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Chaz Hayden Moderator
I totally understand how you and your daughter feel when confronted with uncomfortable questions. As someone who has lived with SMA for 25 years, I can unfortunately say that will never go away. Not just from other children but from adults, too. However, how we deal with these situations will make a huge difference in how you and your daughter feel. I strongly encourage you to talk with your daughter about SMA as soon as possible. The longer you wait will only make it more difficult and confusing for her. Learning that I had SMA was not some life shattering experience. I already knew I was different. So does your daughter. She just wants to know why.
Chaz Hayden Moderator
When I was a kid, I used to tell my friends and other children, "I have weak muscles and get to ride around in this awesome wheelchair." 100% of the time that answer was enough for us to move on and have a fun time on the playground.
Marc Mitnick Moderator
Thank you, Erin, for the informative article, tackling a difficult question from your daughter. My wife and I were not faced with that direct question. However, we mainstreamed our daughter in every aspect of life, from education to socialization. She knew she was like all the other girls, except that she couldn't walk. She never questioned why she did not walk. She knew she had SMA. When she was young, I took her 'ice skating' in her umbrella stroller to experience the feeling of sliding and the air rushing through her hair. Bowling, I had an aluminum ramp made and placed it at the sweet spot on the lane. She tapped the bowling ball and almost always, got a strike. Later on, she developed an articulation test for me to present for my Master's Thesis in Speech Pathology. Being focused on her "can-do's" helped keep her laser-focused on the positive things in life. Regards from one caring parent to another! Marc M., <a href="http://ParkinsonsDisease.Net" target="_blank" rel="noopener noreferrer nofollow">SpinalMuscularAtrophy.net</a>, Moderator
Jennifer Greer Moderator & Contributor
<inline-mention username="Erin Courteau" user-id="4172421"/> This is a tough one for all the parents with a child with SMA. I had the same mentality growing up watching my siblings playing sports, learning to drive, going off to parties with friends, etc. I always said well I’ll do that when I’m older. I’ll do everything they will. It won’t matter that I’m in a wheelchair. But I didn’t. I have SMA type on the weaker side and my life looked a lot different in my head than it turned out in reality. I would suggest maybe talking to her about the SMA and let her know that while that may happen, it also may not and that you’ll find other ways to do whatever you want to do in life. Something I still struggle with is this exact scenario and I wish my parents would have given me little talks about SMA and how I was different and how my life may not be the same as everyone else, but it was okay. It framed a bit of false hope in my naive child brain that still hurts inside today. You’re doing great! Keep sharing your story! You’re not alone. -Jennifer Health Leader