Trying to Live With Sanfilippo but Without Constant Worry

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by Kelly Wallis |

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Raising children is a big responsibility. Parents experience so many emotions while rearing children — joy, sadness, frustration, gratitude, fear, and more. So many things can go wrong. So many reasons to worry.

I’m not a worrisome mother; I try not to sweat the small stuff. This is partly due to my personality, my general disposition, and my outlook on life. It’s also because I’ve had to wrestle with cancer for the past seven years. If I cannot control it, I try not to worry too much about it. I believe this is also a learned response.

When my daughter Abby was young, from about age 2 to 13 or so, she was a complicated and difficult child. She was incredibly hyper and oppositional, and she always challenged me. I was on a constant quest to discover how to approach her and handle her outbursts and difficult behaviors. I was a big believer in being proactive by doing whatever it took to prevent meltdowns from occurring. There was some success and lots of failures.

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I cannot begin to describe the amount of frustration, self-loathing, despair, and sadness I experienced throughout those years. I loved this child so much, but also hated her (hated her behavior, that is) so much at times. And then I was simultaneously raising her neurotypical sister with completely different expectations. They were some of the most difficult years of my life.

Had I known Abby’s behaviors were due to Sanfilippo syndrome, I think it would’ve been easier to tolerate and understand. She couldn’t always help the way she was acting, and I didn’t know that at the time. However, this challenging period taught me something: I learned to choose my battles with her. It was hard, but it taught me not to worry about every little thing she did or didn’t do.

Fast forward to the present. Abby is now 26 years old and much less capable than her younger self. Based on statistics for Sanfilippo syndrome, she shouldn’t even be here today. However, she has an attenuated type of Sanfilippo, which means it progresses more slowly. So what does that mean? How do you determine or measure something that is slower progressing? It’s very subjective.

My desire to stay calm and my hesitation to worry prevent me from constantly perseverating on Abby’s diagnosis. However, there will come a time when worry will be warranted and probably necessary. There are moments here and there that cause uneasiness. Whenever Abby winces or shows any sort of pain or discomfort, it scares me. Fortunately, it’s not often, but I instantly worry something is very wrong and she’s hurting.

My husband and I have iPads mounted on the walls beside our bed to watch Abby at night. At least once a week, whenever she’s not moving as I watch her on the iPad, I worry that she’s unconscious or that she’s passed away. If I go into her room in the middle of the night to check on her and she’s really still, for a few fleeting seconds, I think she has passed. It hits me in the gut, and I put my hand on her to make sure she’s breathing. But I know there will come a time when she will not be breathing.

Hopefully, my hesitation to worry about every little thing will benefit me in the coming years as Abby continues to decline. Maybe the fact that Abby’s former difficult years taught me not to worry will end up helping her now and in the future. I pray that my responses will be commensurate with what Abby must endure.

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.


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