Finding time for moments that really matter in life with Sanfilippo

How do you live in the moment when there doesn’t seem to be any time?

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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“Do we get to go to the Halloween party next week, Momma?” my 10-year-old daughter asked the other day.

“We do get to go!” I replied happily. “They gave me the date a long time ago and we were able to schedule it in. Dad and Will are probably going to leave early so that Will can get to bed on time, but we can drive separately, and you and I can stay a little later.”

“Hooray!” she exclaimed.

“But, sweetheart, please know that we can’t stay out too late. And we can’t do an impromptu sleepover or anything. Your brother has his adaptive faith formation the next morning, and then we’ll have run club, and you’ll have homework and chores, and …”

“Oh, I know, Mom,” she interrupted, laughing and rolling her eyes. “We can’t do anything in this family without planning three years in advance.”

As my daughter walked away still chuckling, I couldn’t help but realize how right she was. Our rare disease life makes planning a must and spontaneous decisions an impossibility.

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Our son, Will, was diagnosed with Sanfilippo syndrome when he was 4 and his sister was 18 months. As with most terminal diagnoses with no available treatments, we received the standard “I’m so sorry, there’s nothing we can do. Just take him home and love him” speech. We took it to heart, throwing ourselves into what love looked like at the time: clinical trial applications, therapies to hopefully stave off regression, rare disease advocacy, fundraising and awareness activities, and anything else that kept our minds occupied instead of dwelling on the heartbreaking news. These activities became our “family time,” and we centered ourselves on Will’s diagnosis and needs.

It was easier when the kids were younger. Will had some type of therapy (speech, physical, or occupational) every day in the afternoon and equine therapy during the weekends. There were also two years of traveling for clinical trials every other week, along with all of the other medical appointments. Making schedules and routines and turning down plans that didn’t fit in the boxes of our calendars became second nature.

Finding a balance

Then Little Sister started school, adding friends and activities into the mix. We had to find a balance between letting her live a “normal” life and not compromising Will’s care, so her activity options were limited to what would fit into our already overscheduled lives.

That’s not to say we weren’t also trying to have fun and make memories — we had a bucket list to complete! But all of those trips were meticulously scheduled far in advance. We want both of our children to live full, memorable lives in their own way. And since we can’t be spontaneous, I fill our planner months in advance, making continual to-do lists that never feel like they’re done.

Now I am exhausted. It doesn’t help that it is October, arguably one of the busiest months when you have school-age children. Between my husband’s job, the kids’ schools, Little Sister’s activities, Will’s therapies and appointments, and my job, I feel like I’m running on empty and not actually getting to enjoy the life we’ve so painstakingly scheduled together.

So the question becomes, how do you live in the moment when there doesn’t seem to be any spare moments left to live in?

We’re never going to be spontaneous people. I’ve made my peace with that. Living with a medically complex child whose entire week can be thrown off by one missed medication or late bedtime won’t allow it. If we’re going to do something, it has to be scheduled.

But I can start being more judicious in what I choose to add to that schedule. Sometimes I think I add too much to compensate for the fear of missing out based on our life circumstances. But I can choose to schedule downtime. I can choose to schedule family time. I can choose to take a moment.

I can also choose to follow advice I was given so many years ago, which is to just be together and love one another. In the end, that’s what matters.

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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