Getting Over the Fear

Bill Strong just wrote a post called “Getting Out With Gwendolyn…At Some Point, We Just Started Living” ( If you don’t know who Bill Strong is, you should. He’s the dad of an amazing little girl named Gwendolyn, who happens to have Type I SMA – the same as my son Andy. Bill and his lovely wife Victoria started the Gwendolyn Strong Foundation to educate others about SMA, to fundraise for a cure, and to offer support to other families dealing with a heart-breaking diagnosis. But, I digress…

Bill’s post really stuck with me. You see, on the outside, I’ve been a vocal advocate for SMA awareness. I’ve told Andy’s story to whomever would listen. I do what I can to affect change. But, at home, after the event of the day is done, I cry.  Because it hurts to look at his pictures and to relive the memories of his battle with SMA. Because I hate that he’s not here with me. Because the fear that was born in me at the first realization that something was terribly wrong with our sweet baby boy remains. My life stopped on the day that Andy was diagnosed, and I really haven’t started living again.

When Andy was alive, he and I stayed cocooned inside our house, when we weren’t at the doctor’s office or hospital. I was afraid of exposing him to germs, because he was so medically fragile that a common cold could have ended his life. I was afraid that he would have an “episode” while we were out, and I wouldn’t have the equipment I would need to keep him safe. I was afraid that any given moment would be his last.  Every second of every minute of every hour of every day from his diagnosis to his passing, I was afraid.

Andy’s been gone now for 19 months, four times longer than we had him with us. And, I have to admit that I’m still afraid. It’s different now. I’m afraid of breaking down in tears at the grocery store, the doctor’s office, the office, etc. I’m afraid of not having the right thing to say when someone asks me if I have kids. I’m afraid of pitying looks from people who know my story and of being blind-sided by those who don’t. Sometimes, I’m still afraid to leave the house.

And, when my daughter Lucy was born this summer, my fears intensified. I know that she doesn’t have SMA, but I’m so scared that the other shoe will drop, as it did before. I still check her every night to make sure she isn’t blue. My heart stops when she sputters or coughs. When she was just four months old, we had to rush her to the hospital with a fever of 105 – the same hospital at which Andy was first admitted to the pediatric intensive care one year earlier. I was so afraid that we would lose her too. But, we didn’t. She recovered quickly and is fine.

And, now I’m really tired of being afraid. I’m ready to recover too. I’m ready to break free from the shroud of sadness and fear that has been hanging over us for so long. I’m ready to live again, because I know that’s what Andy would want for us. And, it’s what I owe him and his sister.

A few days before Andy’s funeral, I woke up with a song in my head. It was Lee Ann Womack’s “I Hope You Dance.” Since I am not a big fan of country music, it surprised me that it came to mind. So, I found it online and listened carefully to it. At first, I thought that it perhaps was a message from my boy, telling me that he was dancing freely in heaven.

But, now, I think instead he was telling me that he wanted us to live for him, fully and completely. I think he wanted us to let go of the anger and fear…to unwrap that shroud surrounding us. To willingly take chances, regardless of the outcome. To know that, while we will ache for him forever, we have to keep moving forward and continue to fight the darkness.  To be aware of the gift of each unfettered breath and of the other little wonders that fill our days. Maybe more than all of that, I think he didn’t want us to lose faith.

Still,  I don’t think I’ll ever get over the loss of my son. I know that there always will be an Andy-shaped hole in my heart. But, it’s time to let go of the demons. While I know I’ll still have dark days, it’s time to open the windows and let in the light. It’s time to regain control over my life and start living again. It’s time to dance.

–Audra Butler


I Hope You Dance

By Lee Ann Womack

I hope you never lose your sense of wonder

You get your fill to eat but always keep that hunger

May you never take one single breath for granted

God forbid love ever leave you empty-handed

I hope you still feel small when you stand beside the ocean

Whenever one door closes I hope one more opens

Promise me that you’ll give faith a fighting chance

And when you get the choice to sit it out or dance

I hope you dance

I hope you dance

I hope you never fear those mountains in the distance

Never settle for the path of least resistance

Living might mean taking chances but they’re worth taking

Lovin’ might be a mistake but it’s worth making

Don’t let some hell-bent heart leave you bitter

When you come close to selling out reconsider

Give the heavens above more than just a passing glance

And when you get the choice to sit it out or dance

I hope you dance

(Time is a wheel in constant motion always)

I hope you dance

(Rolling us along)

I hope you dance

(Tell me who wants to look back on their years and wonder)

I hope you dance

(Where those years have gone)

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6 Responses to Getting Over the Fear

  1. Getty Owl says:

    What a beautiful post. Thank you so much for sharing with the world. You and Bill Strong are inspirations for us all.

  2. Dearest Audra, This is such a beautiful post. I think it is interesting how Bill’s post made you think and your post in turn has made me think. Thank you for your honesty. You always inspire me!

  3. Laurie says:

    I can’t express in words just how blessed I feel to have you in my life. You are more than my friend, you are my family! Love you!

  4. Tony Burks says:

    Audra, What an incredible post.
    What continues to amaze me is the similarities with SMA kids and parents. As I read this it was like it was coming from inside my own head. We are currently in that scared mode, scared of getting out, scared of an episode, scared of leaving the comforts of equipment and electricity, mostly scared of what is to come. We try to dance as well. We live by the saying; “Life is not about waiting for the storms to pass, It is about learning to dance in the rain”. Unfortunately it rains REALLY hard in the SMA world.
    I can’t say I understand where you are right now, but it hurts to know that I will.
    Certainly Andy would want you to dance every chance you get. I hope you do.

  5. shaina rappoport says:

    i loved reading this… so well written… so true…thanks for sharing..

    shaina rappoport

  6. Kayla says:

    My baby brother died from SMA Type 1, it was 8 years ago and he was almost 4 months old. I still miss him and I am still not “over it”. This story had me crying. <3

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