It’s 1 AM, so I Must Be Tired

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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It’s 1 a.m. on a Wednesday, and I’m sitting in my living room debating my options while listening to my 11-year-old son repetitively clap and growl over the baby monitor we still keep installed in his room.

Will isn’t sleeping tonight. Which means I’m not sleeping tonight.

Although none of the devastating symptoms of Sanfilippo syndrome are particularly fun to watch occur in your child, chronic sleeplessness is one of the most difficult, due to the sheer impact it has on every member of the household.

Children with Sanfilippo have recurring issues with sleep. It seems as if their brains and bodies just can’t “turn off,” and sometimes they go consecutive days without sleep. And because children with Sanfilippo lack an understanding of self-safety, their caregivers also end up going consecutive days without sleep, because we must monitor our children constantly for their safety.

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Speaking of monitor, the baby monitor is telling me Will isn’t winding down. I originally tried to lie down with him to soothe him (stage one of our sleepless night recovery plan), but I couldn’t stay in the room for long, as his incessant clapping and growling noises at full volume become particularly grating to tired ears in the middle of the night.

I then moved to stage two: turning on his lamp and giving him some books to look at in hopes of keeping him calm enough that he might be able to settle down and not wake his dad or his sister. But I could see that wasn’t working.

Time for stage three: I bring him downstairs with me and let him watch “Paw Patrol” in an attempt to allow his brain to focus on something else and stop the repetitive loop that seems to be playing.

All of this harkens back to the sleeplessness of having an infant, except there’s no tiny baby to hold and try to rock to sleep while watching reruns of “Wizards of Waverly Place” on the Disney channel, not Disney+. (Don’t judge. Listen, it was all that was on in the middle of the night in 2010 that had a simple enough plot for my sleep-deprived brain to follow.)

And there’s no truth to the adage “sleep when the baby sleeps” because a) this baby ain’t sleeping anytime soon, and b) I still have to be a fully functional adult in about five hours to both get my daughter ready for school and complete my work for the day.

Even now, as I try to cuddle Will on the couch and help calm his constantly moving arms, my 100-pound baby just pushes and smacks me away, frustrated with himself that he wants to sleep but cannot find a way to get there. I give him space, keeping an eye on him and attempting to do some work as I know my daylight hours are shot.

We’ve been relatively fortunate that, within the Sanfilippo realm, Will’s usually a pretty decent and consistent sleeper. I don’t know if that makes nights like tonight better, because I’ve got a rest reserve I can tap, or worse, because I’m not used it. But I do know that this is one of the times when living with Sanfilippo is the most difficult for me. Not only does it take a toll on me as a caretaker (there’s a reason why sleep deprivation is a form of torture), but it prevents Will from achieving respite from his own symptoms. He deserves rest and calm, and I hate that Sanfilippo can steal that from him, too.

But for now, in this moment, I will sit with him. I will take comfort in his noises and his clapping because any time I get with him, even the difficult time, is precious.

Will I be completely drained come morning while he is, somehow, at full energy? Yes. Will I scramble to get his sister ready for school and end up scrapping my work day? Yes. Will I go back and forth about whether it’s worth rushing around to get him ready for school, or if I’ll let him stay home and watch cartoons while I half-doze on the couch? Also yes.

Will I someday, as tired and frustrated as I am right now, miss these middle-of-the-night moments with my son and wish for them back?

Absolutely yes. So back to “Paw Patrol” it is.

sleeplessness | Sanfilippo News | Valerie's son, Will, sleeps on his baseball-themed bedding.

Will, finally able to get some rest. (Photo by Valerie Tharp Byers)

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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