A Sanfilippo Parent Looks at 40

I was sore. It was nothing major, just the usual muscle aches following a good workout when you’ve been off for a while. It was late August, and the kids had returned to school. Summer is hard enough as a full-time caregiver to a child with special needs, but it becomes exponentially harder during a pandemic when that child is classified as high risk and is too young to be vaccinated.

Therefore, we spent our summer finding low-risk activities we could all do together. I definitely did not spend the time fitting in regular workouts. Whoops. But with the kids back in school, I had the time — and the need. Being Will’s caregiver means I need to be strong enough to keep his 95-pound, no-safety-instinct self active but safe. Also, working out is my stress relief. So, I was happy to be restarting some type of fitness routine.

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Or I was. Until I bent over, ever so slightly, to help Will stand up from his chair after dinner. And then I couldn’t unbend. My back was locked. I was in pain. I could barely move. All I could think was, “Is this what 40 will look like?”

I’ve always loved my birthday. I’m one of those annoying people who grew up insisting that we celebrate my birthday all month long. This year, October brings my 40th birthday, and the milestone has already produced some good-natured ribbing. Thankfully, I shed the notion of being horrified of aging a long time ago.

After tragically losing friends to accidents or illness, I knew I would never resent getting older. Having another birthday is a privilege denied to many. This sentiment became even further ingrained in me when Will was diagnosed with Sanfilippo syndrome. It’s hard to begrudge a birthday when I know the number of birthdays my son will get to celebrate is limited.

But coming into 40 does tend to make one reflective, regardless of circumstance. I’m sure that I am contemplating many of the same things most people do at this age, as I muse over where I am and where I wanted to be at this point in my life. Unsurprisingly, my life looks very different than I thought it would, but having a medically complex child with a rare, genetic condition will do that. But that doesn’t stop me from thinking about the usual things like my health, my professional life, and my general happiness and satisfaction.

I’ll admit, my concerns about Will’s health usually take priority over my own. Pulling my back and straining my piriformis alerted me to the fact that I can’t take my physical health for granted anymore. I’m thankfully mostly recovered, but the chaos that the injury threw our family into for several weeks was a firm reminder that I can’t leave my health up to chance and sporadic workouts. To keep Will strong, I need to keep myself strong.

Another thing people usually contemplate at this age is their career path. Well, that one’s easy. What career path? When you have a child with special needs, the concept of a career kind of goes out the window. Medical appointments, therapy sessions, and lack of appropriate childcare options mean that I do not have time to work because I am already engaged in the very real, full-time job of caregiving (which, sadly, in my location, doesn’t come with any pay or benefits).

My inability to work was one of the hardest things for me to accept on this journey. Thankfully, I have been able to pivot to use my experience and expertise in advocacy for the Cure Sanfilippo Foundation and to write this column, which helps satisfy my professional desire to contribute.

But really, none of this is truly what people contemplate as they enter into middle age. They are simply symptoms of a bigger goal, the real goal: fulfillment. All any of us want is to feel that we are reaching the fullness of our potential.

And while my son’s diagnosis has changed the course of my journey, either completely or by long, scenic detours, my path to feeling fulfilled has never been more clear. The work I do, while not conventionally world-changing or profitable, is important. It has given me clarity that I would not have developed otherwise. I can say that I am happy and satisfied because I now know that happiness, satisfaction, and fulfillment don’t come from accomplishments, but rather from a mindset of appreciating even the simplest moments in life.

Like the moment your almost 40-year-old back stops hurting.

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Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.