Spinal muscular atrophy Caregiver

Dany S.

Mom

Growing our family after SMA

My husband and I always wanted 3 children. Even before we got married, we would talk about it like it was going to happen simply because we had decided so. We talked about baby names we loved, and if we wanted to have a daughter first or a son. And we started looking for a home that had the perfect room for a nursery and began planning what those future lives would look like.

Well, no amount of planning could have prepared us for what actually lay ahead. Of course, receiving our first child’s diagnosis was life-changing and heartbreaking. 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.

To help us move past this loss, and to a place of hope and peace, we spent a lot time talking about possible outcomes should we decide to have more children. Before we began these discussions, I admit that I was terrified of the potential of having another child diagnosed with SMA. How would we juggle more special needs? How could we afford it? Three power chairs in one vehicle? It’s enough to make your head spin.

We spoke with many, many other families who have grown their families in a variety of ways, making a number of different choices along the way to do so. And I think the key to reaching peace with our decision was that we didn’t rush it. We really did go through every emotion while we discussed expanding our family. My feelings shifted from being very afraid of facing another diagnosis (after months of researching options, testing, and speaking with other families) to a peaceful knowing that, whatever the outcome, we could handle it and that our family would become stronger for it. We also had to accept the fact that what was right for other families wasn’t necessarily right for our family, and to be at peace with that.

Our story’s next chapter was to have our son, who was diagnosed with SMA before he was even born. And although I still worry from time to time about what the future will bring, I know now that there are absolutely no guarantees in life. We can choose to sit frozen in fear of the unknown and never move forward, or we can make our decisions based on our hopes, and imagine just how great life can be─whether SMA is included or not.

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Enter SMA

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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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