Editor's Note

What I Learned from Families of SMA

It’s 7:15 on Saturday morning, June 15, and I’m at the Families of Spinal Muscular Atrophy (FSMA) conference at the Disneyland Hotel in Anaheim, Calif. And I’m pretty proud of myself.

Why? First, it’s Saturday morning, and I’m not still in pajamas.

Second, I’m not in tears, either.

Two evenings prior, I’d arrived for FSMA’s welcome reception only to detour into a stall in the women’s restroom. As “When You Wish Upon a Star” played over hotel speakers, I saw dozens of children with SMA, and thought about what had brought them together at this self-proclaimed happiest place on earth. It isn’t supposed to be this way, I thought in my stall. This isn’t right.

As minutes went by, I hissed Stop being so pathetic! until it worked. Barely. Today, I am determined to do better, and it starts with attending this morning’s general session called “It’s a Wonderful Life.” The title has me feeling optimistic.

Kenneth Hobby, president of FSMA, explains the format of the session, which he calls “one of the most looked-forward-to events.” Six adults with SMA will field ask-us-anything questions from an audience largely composed of parents whose kids have SMA.

The panelists vary in age from young adulthood to middle age, and have type 1 or type 2 SMA. Some of the panelists had been expected to die as infants or young children. But here they are, describing their lives as spouses and parents, as college graduates and grad students, as professors, disability advocates or, in one case, a policy staffer for a U.S. senator.

Hmmm. My rolling out of bed this morning suddenly isn’t so impressive a feat.

The first question is from the father of a 7-year-old with type 2 SMA: “What is something your parents did, right or wrong, while you were growing up?”

The answers fly:

“My father fixated on the depressing aspect that I’m not as able as other kids are, even though I have so many other great things going on.”

“My mother insisted I do chores, even though it took me an hour to dust the living room.”

“I was expected to be respectful and polite.”

“Very early in life, I was empowered to take part in the medical decisions that affected me.”

Next question, from the father of a 12-year-old: “As my son gets older, he wants to hang out with his friends. How do we teach them to help with his care so he can spend time with them?”

Answers: “Kids naturally like helping and will be inclined to help their friends.” “If your child is polite and a good friend, other kids will jump in to help because they’ll want to be around him.” “The earlier that kids get comfortable with others doing some caregiving, the earlier they can start directing their own care.”

Next, from a foster parent: “How do I find good mentors for my son who has SMA?”

From the panelists: “There’s a new Facebook group just for people with neuromuscular conditions.” “Contact your local FSMA chapter and ask if an adult member would like to be a mentor.” “Ask yourself, ‘How would I find a mentor for him if he didn’t have SMA?’”

As the discussion continues, that theme becomes more prevalent. One panelist suggests parents ask themselves, “Would I treat my kid without a disability the same way?” Another panelist explains to parents why kids with SMA need to learn to take charge of their medical decisions: “Because they may outlive you.”

The panelists proved that SMA isn’t the top priority in every conversation they have. Nor does every SMA diagnosis have a foregone conclusion. This isn’t the journey that parents expected, but there can be hope and happy moments despite the detour. For that lesson, I’m grateful.

This article originally appeared in the August 2013 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

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