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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 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 people were living with SMA. I had to purposefully readjust my thoughts from what might go wrong to what might go right that Ruby may end up deliriously happy with her life. I had to surround myself with others who saw the 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 influence our choices and our dreams for our kids again. I know now that it is our job as parents to instill this perspective in our children.

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The preceding article is content provided by our sponsor Biogen. The views and opinions expressed in the content above are not the views and opinions of SMA News Today or its parent company, BioNews Services, LLC.
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SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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