This Rare Disease Day, honor a caregiver in your life
Our caregivers are equally worthy of being heard and seen
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When I was little, SMA wasn’t widely known or understood. Its rarity meant that few people had heard of it unless they were confronted with it. Families like mine carried much of the responsibility of sharing our knowledge and experience to educate others, from friends to medical professionals, about the condition we lived with.
Today, SMA is still rare, but much of what was previously unknown has come to light. As the SMA community has continually shared our experiences, the medical community has taken greater interest and helped us unearth the mysteries of genetics, treatments, and other scientific and medical advancements that have led to better health outcomes.
More people than ever are living into adulthood with SMA, and as our longevity increases, so do our opportunities to advocate and tell our stories. One such opportunity, not only for the SMA community but for all rare disease communities, is Rare Disease Day, which is recognized annually on the last day of February. That’s tomorrow!
For this Rare Disease Day, though, I’m not going to tell you my story. This year, I’m honoring the ones who make stories like mine possible. Too often, they get left in the background despite their invaluable sacrifice and endless effort. Of course, I’m talking about caregivers, and in my case, my mom.
This isn’t about me
If you’re a longtime reader, you know that my mom appears in almost every one of my columns, and for good reason: As the most active person in my life and health, my mom is whom I’ve chosen as my primary caregiver, a lifelong role she’s not only accepted but embraced since I was officially diagnosed as a baby in 1999.
I can’t tell you what it’s like to be told your child won’t live beyond the age of 3, or about the experience of raising that child for almost three decades — time you weren’t promised. You’d have to ask my mom for that story. (Seriously, ask for her perspective sometime. I’m not the only source here.)
What I can tell you is that my mother is a force to be reckoned with. She heard that her daughter would almost certainly die soon, and she chose to make sure I experienced life, fully and spectacularly, for as long as possible. She fought with and for me, and she still does. She never gave up — on hope, faith, or me. You can’t tell me that’s not what courage looks like.
I believe that my mom is the provision God has given me to not only survive life with SMA, but thrive in it. There are certainly other people and pieces in my support network that deserve credit, too, but I don’t know if any system that didn’t have her at the helm alongside me could have achieved anywhere near the same success.
My mom is the one who always shows up, fills any gap in my care, drops everything to be where I need her, makes sure I never go without, and does it all again the next day with no less grace, compassion, strength, love, and dedication.
Care about a caregiver? Speak up!
Around the world, countless caregivers provide for their loved ones. On an expert level, they’re practicing the skills of doctors, nurses, pharmacists, respiratory therapists, physical therapists, advocates, and more. And that’s on top of normal relationship dynamics with the person they care for.
They’re transporting, communicating, bathing, dressing, planning, organizing, tackling the dirty jobs, solving problems, celebrating the wins, not sleeping, and teaching everyone else how they do it.
Caregivers are incredible. But as Rare Disease Day looms, I see very few of their stories being highlighted, even though their lives are no less affected or important. They’re equally worthy of being heard and seen, so why aren’t we paying more attention? Why aren’t we appreciating them as much as they deserve? Why aren’t we showing them that we value them?
Sometimes we become so focused on the stories of people with rare diseases that we forget someone raised us rarities, and there are still people devoted to making sure our stories continue. We forget they have stories, too. We even make the mistake of shoving them into the shadows, dismissing and diminishing their worth.
We cannot be content to let this keep happening. With my platform, I’m committed to illuminating the caregivers we literally can’t live without, especially my amazing mom.
Regardless of whether you have a platform or a caregiver, I challenge you to make the same commitment. You can show your support for the caregivers in your life, the ones caring for someone you love, and the ones you may never meet.
Don’t stay quiet. Don’t close your eyes. Turn on the lights. What are you waiting for?
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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