From My Family to Yours

A few days ago, my parents and I were reminiscing around our dining table. I’m not sure how we got onto the topic of ambulances and hospital visits. Maybe I mentioned my brush with anaphylaxis a few weeks ago and how weird it was to ride in an ambulance by myself for the first time. It didn’t take my parents long to disprove many of the “facts” I had thought were the cornerstones of my medical history.

For example, until recently I thought I’d only been in an ambulance once. We were in Florida on a family vacation, and the paramedics picked me up from the resort where we were staying. But I’d been in an ambulance one other time: My dad took me to my GP, and as I was satting in the 40s, she sent me to the emergency room. My dad followed the ambulance in our van but got lost on the way.

That was one of our scariest hospital trips to date. Apparently. Either I was so traumatized I wiped the memory, or I was too young to remember it. I was so sick I had to be sedated.

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I sat in our dining room with my feet on my mom’s laptop and watched my parents’ eyes go glassy and distant, the air turning heavy and thick, and the tone somber, as they recalled the experience. It was hard to listen to. I generally try to keep my eyes on the horizon, but sometimes it’s impossible not to look back and marvel at how far we’ve come as a family.

My pulmonologist is a short, wiry man with a grizzled jaw and a shock of gray hair. Every time he enters the exam room he asks, “Have you been washing your hands?” I’d always believed that he first met my mom when she was pregnant with me. That is, after all, what he’d told me. But apparently that’s not true, either, because my mom met him for the first time in a hospital room, the same visit they sedated me.

They came home from the hospital that trip with new medical equipment. My dad remembers feeling overwhelmed: I’d been so sick, and they had walked away from that encounter knowing just how fragile my life was.

“It seemed impossible,” he said. “I didn’t know how we were going to do it all.”

I don’t pretend to know what it’s like parenting someone with SMA. But I hope this column will serve as an encouragement, from my parents to you, whether you’re a patient with SMA or the relative of one.

When I was diagnosed, my parents were heartbroken. The doctors said I wouldn’t live past the age of 9, so they gave me the best life they could in the short amount of time I had. They took me on vacations, diligently packing every single piece of medical equipment every single trip. They hosted birthday parties and watched “101 Dalmatians” more times than any grown person should ever have to. It was hard. They didn’t know what they were doing half of the time. But they figured it out. They found their groove, and now I’m 23 — 14 years older than I should be, healthier than any of my doctors would have predicted in the 1990s.

Living into adulthood had seemed impossible at the time. But my dad went on to say, “Now it’s just old hat.” These days, they’re more familiar with my medical equipment than the nurses and doctors are. When I get sick, it’s not as terrifying as it once was. There’s nothing worse than getting sedated, and I’ve even managed to survive that. We don’t pack every single piece of equipment every single trip, because we know that if something happens while we’re away we’ll figure it out.

Maybe you’re going through a tough time right now. I get that. The holidays are stressful and that stress is compounded when you or someone you love is sick. But I hope you know that it gets better. Because it does. Diagnosis is frightening, and sometimes even traumatic, but there is so much more in store for you, and not all of it bad. Take heart in that this season. I certainly will.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.