Sometimes, navigating PWS simply means weathering the storm

The morning started like any other. We woke up to our 3-year-old daughter, Emerson, bouncing on the bed, body-slamming us, and laughing, while our 11-month-old son, Ellis, was in his bassinet, babbling and smacking his aquarium toy until it turned on. Time to start the day.

I tried to sneak a few extra minutes in bed while my husband, Jamie, took Emerson downstairs for breakfast and got Ellis’ gastrostomy tube ready. Both of our kids have Prader-Willi syndrome (PWS), which affects them in various ways. After only a few minutes of relaxation, I heard loud yelling and crying coming from downstairs.

I don’t think I’d ever moved that fast before. Emerson rarely cries. She’s usually chill, always silly, and mostly unbothered by things, so the crying was strange.

Recommended Reading

July 30, 2026 News by Margarida Maia, PhD

Children with PWS show distinct profiles of cognitive, emotional difficulties

My mind immediately went to the worst-case scenario, thinking she was hurt. Mind you, this kiddo has a pretty high pain tolerance. She falls, runs into things, and bumps her head without being fazed. (Gotta love the phase when their head is at counter height!) A kid at school scratched her on the arm, and she just stepped back and stared at him. So for her to be crying, she’d have to really be hurt.

Jamie was in the living room holding her as she wailed. I asked what had happened, but he had no idea. He’d sat down to change her diaper, and she started screaming out of nowhere. We tried getting to the bottom of it. Does something hurt? Are you hungry? Do you want your diaper changed? Does your tummy hurt? Nothing. Not even an attempted response.

Currently, Emerson is largely nonverbal. We get a word here and there, and we consistently hear “go,” but she mostly communicates by pulling us toward what she wants or by using a handful of signs. She has her own way of telling us things, and most of the time, we can figure it out.

Not this time.

Her cries grew louder as tears streamed down her face, and she looked back and forth between us like we were supposed to understand. Jamie held her, then I did, trying to console her. Our confusion was obvious. I think our panic was, too.

I urged Jamie to start making breakfast while I grabbed what I needed to change her diaper. She wasn’t going to tell us, so we needed to act on our guesses and hope something worked.

I changed her diaper, but she continued crying. I held her on the couch, tried laying her down, and asked the same questions again. Is it your belly? Are you hungry? I checked for any visible concerns — swelling, punctures, scratches, an injury we’d missed. Nothing. What was going on? Full panic was setting in.

Then, all at once, she stopped.

She wriggled off the couch, picked up a toy, sat down, and started playing with it, dancing along to the music it made like she hadn’t just spent what felt like hours howling and soaking my shoulder in tears.

I still don’t know what upset her. What I do know is that I have never felt so helpless.

Sometimes there’s nothing to fix

That particular morning reminded me of how much we’ve yet to learn. Last year, along with PWS, Emerson was also diagnosed with autism. We were aware it was a possibility before we officially matched to adopt her, and her care team and psychologist have since told us the two conditions overlap quite a bit. I mention this to shed light on the additional complexity that can come with navigating this kind of situation.

My mind buzzed that morning with all the possibilities for her discomfort: pain, sensory overwhelm, hunger, tiredness. It could have been one, maybe a combination, maybe none at all. What I’m learning with our kiddos is that we can’t always rule things out one by one.

This experience had me diving deep for answers, but crying spells that seemingly come out of nowhere aren’t unusual for those with PWS. Emotionally explosive episodes may just happen. Sometimes there isn’t a single reason.

Good parenting, I’m discovering, isn’t about having all the answers. Sometimes it just means riding out the storm with your kids, offering them comfort, and being present. You hold on. You guess. You try everything you can think of. Eventually, you’ll either find the cause and meet their need, or it’ll pass.

I’ve come to accept that sometimes, I may not find a cause, and other times, there may be no cause at all. I wish I had words of wisdom or a clear solution to share, but I don’t. There’s just the experience of my daughter crying into my shoulder, and all of us now on the other side of it, doing OK.

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.