There’s no autopilot when raising 2 kids with Prader-Willi syndrome
PWS requires constant tracking, scheduling, and coordination
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My husband, Jamie, and I have developed a constantly evolving system to plan for the week ahead.
Standing in the kitchen with multiple calendars open, we map out the week’s schedules and logistics. We do a pretty good job. Bonus points if we can coordinate appointments around the same time in the same location.
However, there are times of communication lapses or scheduling conflicts. Both of our children — Emerson, 3, and Ellis, 11 months — have Prader-Willi syndrome (PWS). So one kiddo will have an appointment at 10 a.m. across town and the other at 10:30 a.m. downtown. Then we have to throw in work schedules to figure out how we can divide and conquer or adjust as needed. Thank goodness for after-visit summaries!
Most parents likely have a similar system to ours and will tell you that family coordination is an inevitable tax. That’s not unique to us. That’s just the mental load of parenting, which has become an increasingly hot topic. Awareness and education exist now more than ever, and for good reason. It’s a lot!
What’s more nuanced is the additional layer of complexity we face on top of the typical coordination. PWS requires constant tracking that’s always running in the background.
What the calendar doesn’t say
My calendar entry says “Ellis Therapy, 10 a.m.” It doesn’t say that I need to remember to update the therapists on the change to his growth hormone dosage, ask whether they are familiar with a posture product we were informed of, or request an X-ray because we noticed a curve in his back when he’s sitting up. The calendar doesn’t reflect that I’m simultaneously tracking Emerson’s food environment because, unfortunately, hyperphagia risk doesn’t take a break just because I need to focus on her brother’s appointment.
This can be hard to explain to those who haven’t cared for someone with PWS. Parenting involves plenty of logistics, but so much of it can go on autopilot eventually. When a toddler asks for a snack, they could be handed some fruit snacks or the indulgence of a cupcake. For our kiddos, we have to think about how many carbs they’ve had that day and what’s planned for dinner just to determine whether they can have Cheerios or need a veggie pouch.
Every meal requires monitoring. Every appointment carries a running list of what to ask, what changed since last time, and what the last provider said that this provider needs to know. Every evening requires a growth hormone injection.
There is no autopilot here.
The math doesn’t double
I’ve always heard that going from one to two kiddos isn’t doubling the load — it’s tripling. In our case, it may be quadrupling because we’re tracking different areas for each of them: holding Emerson’s speech strategies and food environment in one part of my head, and Ellis’ posture goals, hCG hormone schedule, and gastrostomy tube supplies in another.
A few weeks ago, I had to change an appointment time and forgot to update the calendar on the fridge. It was a small mistake that we caught the night before, but it was proof of how much we’re holding all day, on any given day, without too much room for error.
We split and manage the load together, which I’m very grateful for. Jamie takes one appointment to ensure I’m available for a meeting at work, and I take another so he can bring his car in for an oil change. We debrief afterward and quickly text updates about pressing matters.
But splitting the tasks doesn’t split the mental tracking. There’s no version of our life where one of us gets to fully hand off and stop thinking about it all. Researchers call this “cognitive labor,” and even in households that split tasks evenly, one partner tends to take on more of the mental load. In ours, that’s usually me, which makes our check-ins crucial to prevent burnout.
2 things can be true
Most days, things run fine. We’re building systems, color-coding our calendars, and developing habits that make the management feel more automatic. Some days are harder than others. Systems aren’t perfect. The challenges and intensity ebb and flow.
Each day I wake up to my children’s beautiful faces, I’m filled with gratitude. Ellis’ smile in the morning is infectious, and Emerson’s dance moves are the highlight of my day. I’m also filled with anxiety because I’m tired, stressed, and a little overwhelmed. These feelings aren’t mutually exclusive.
I used to think admitting I was overwhelmed meant I wasn’t handling it. I’ve learned that I handle it better when I stop pretending it isn’t there. Naming both is part of what keeps us healthy enough to keep doing this.
It’s not about doing it perfectly. Most nights, we’re still standing in the kitchen, calendars open, figuring out tomorrow. That’s the job.
We have to take care of ourselves so we can keep showing up for them.
Note: Prader-Willi Syndrome News 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 Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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