How my mother gave everything she had to a child with SMA
Why do we blame mothers when their child doesn’t have a clean bill of health?
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“You must have dropped the baby.”
That sentence was one of the many knives flung at my mother’s chest when I was diagnosed with SMA. She was 24, barely an adult. I was a difficult pregnancy, born a full month before I was due. My birth would’ve been even earlier had she not agreed to use salbutamol to ensure my lungs fully developed within her womb. She had to endure feeling worryingly weak just to keep me safe.
That was the first of her countless sacrifices. Without it, I literally wouldn’t be here. Underdeveloped lungs, combined with SMA, would be trauma on top of trauma, to put things mildly.
I’m 27 now. It blows my mind that women choose to allow a parasitic phenomenon inside their bodies for up to nine months, adorable as babies are. I can’t imagine making that choice at this point in my life, let alone the harder choices that come along with complications. Don’t get me started on maternal mortality and postpartum hormone fluctuations. The moment someone chooses to keep their pregnancy, they’ve exchanged their life for their child’s on multiple levels.
Why then, do we blame mothers when their child doesn’t have a clean bill of health? Who would it help to twist that knife? Not the new mother, sleep-deprived and learning to nurse for the first time. Not the child, whose disability wouldn’t be reversed by the accusations.
If anything, faulting the child’s parents for a circumstance outside of their control might do harm instead.
Gifts of life
One of the hardest parts of a rare disease diagnosis is coming to terms with it. Everyone does so on their own timelines, in their own ways. Sometimes, that means finding people or situations to blame, a cause. It doesn’t matter how rational the claims are; our minds need things to make sense to our internal logic.
My mom probably blamed herself for my SMA more than anyone else. She didn’t drop me as a baby. She didn’t injure me a single time. In fact, she only stopped breastfeeding me because she was afraid she’d pass on a fever. That was how good of a mother she was. But she blamed herself — and sometimes still does.
That’s not an uncommon refrain among parents of children with SMA. Growing up, I’d hear it among parents of my friends. In more recent years, I’d continue to hear it from couples I’d meet in my advocacy work who had newly diagnosed infants. These parents could have done everything right for their kid, but it wouldn’t matter.
“If it weren’t for us,” they all said, “our baby wouldn’t have SMA. We gave it to them.”
It doesn’t matter what the science of the disease actually is. For them, feeling guilt over their child’s condition was a stop on the journey to coming to terms with it. I know nothing I say can take that guilt away. Otherwise, I would have already said something a dozen times to my mom.
Everything she could
But I’ve been thinking a lot about a recent conversation my brothers and I had with her. During it, my mother said she feels she owes me, that I wouldn’t be “like this” if it weren’t for her. I knew she meant that she thought I wouldn’t be burdened by SMA, but were I able to form sentences properly — I had a migraine at the time that necessitated my pain specialist’s intervention — I would’ve quipped, “Like what? Accomplished? Well read? Compassionate? A smart aleck who jokes too much?”
Because no mom wants their children to have SMA. It’s not something you “give” them like the flu or an injection. For most, the day those of us with SMA are diagnosed is the first time they’ll have even heard about SMA. But mine made sure I had the tools to make the best of life with my disability. To me, that response is what matters.
It angers me then, that rather than give her the tools and support she needed to raise me, many people reinforced the narrative that it was her fault that I can’t walk. They didn’t recognize that disability is part of life and biology’s unpredictability. Even if I hadn’t been born with SMA, I may have eventually acquired other disabilities through accidents or old age. Would they blame her in those scenarios, too?
The bottom line is, my mom was the one who gave me everything she could. Not the people who put her down and talked like they knew better. If you are a parent who’s anything like her, I hope our story provides encouragement.
Note: 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. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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