Spinal muscular atrophy Caregiver

Dany S.

Mom

Enter SMA

 

When we had our daughter, Ruby, like many first-time parents, we had so many dreams for her. And they all involved her exploring the world, finding what she loves to do, and learning all she can about it. Enter SMA.

When you get a diagnosis like SMA for your child, everything shifts. At first, I tried not to spend too much time thinking about Ruby’s future anymore. Just writing that is painful. I didn’t think about my own child’s future. Honestly, because the future was unknown and the unknown felt terrifying. My dreams for Ruby to travel the world and see breathtaking sights felt impossible─and I now wondered how she would navigate it at all.

I’d be happy to help her every day of her life, but who wants their mom along with them constantly? What about all the amazing, old (read: not accessible) cities and monuments, and how will she navigate them? What if she gets to a door she can’t open? Will people be kind enough to help her, or will anyone even be around to help?

These were my thoughts for months after Ruby’s diagnosis. You might be able to imagine why I didn’t want to think about the future too much. But something happened a few months into our journey with SMA. I found myself sitting in a ballroom, watching a panel of adults speak about their wonderful life with SMA. At one point, one of the adults said that if he had the opportunity to live his life without SMA, that he wouldn’t take it. I sat there in awe. I realized that my thinking, my focusing on the barriers in Ruby’s future might be completely unfounded. Would she find obstacles in life she would need to overcome? Absolutely. But don’t we all? Absolutely again.

From that day on, I began to reach out. I connected with other families and adults living with SMA. I asked questions and saw how well people were living with SMA. I had to purposefully readjust my thoughts from what might go wrong to what might go so right that Ruby will end up deliriously happy with her life. And I had to surround myself with others who saw the incredible potential in differences. Slowly, I began to feel my anxiety and fear of the unknown subside.

Today, I focus on one known: our hope. We have returned to letting hope dictate our choices and our dreams for our kids again. And I know now that if we continue to instill this perspective in our children, all the world is still theirs to explore.

Other posts by Dany

Adapting to life outside our home

I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

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Growing our family after SMA

I can barely remember life before I worried about SMA. But perhaps what has been even more difficult for me has been the loss of the option to be able to just up and decide one day that we want to add to our family without fear or hesitation.

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