May brings awareness days, a sweet 16, and a reminder from peonies
Experiencing both celebration and heartache as I raise awareness of PWS, NF
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There is a corner of my yard that quietly tells the story of four generations.
The peonies blooming there started in my great-grandmother’s garden. When she passed, my grandmother replanted them in her backyard. When she was gone, I knew I wanted them in my yard. Every May, those same beautiful, pink, ant-covered blooms show up like clockwork, as if to say: “We’re still here, and so are you.”
Peonies don’t care about your schedule. They bloom hard for about 10 days, explode with color, drop petals all over the lawn, and call it a year. Somehow, that feels exactly right for our May.
What May holds for our family
Because my son, Jake, was born with Prader-Willi syndrome (PWS) and neurofibromatosis type 1 (NF1), May is a heavy month in our house, in both the best and hardest sense.
May 15 is PWS Awareness Day in the U.S., as the syndrome is caused by a loss of genes on chromosome 15. May is also PWS Awareness Month.
World NF Awareness Day is observed on May 17, since the NF1 gene is located on chromosome 17. May also happens to be NF Awareness and Action Month.
On top of that, Jake will turn 16 on May 17!
Yes, you read that right. Jake was born on what would become World NF Awareness Day, years before we knew the condition would be part of his story. The universe, it turns out, has a sense of humor — a flair for foreshadowing. A sweet 16, two rare diagnoses, two communities, and a mother who tries to act normal about all of it. The peonies, of course, were here first and refuse to be upstaged.
The celebration part
Jake is funny — the kind of humor that sneaks up on you mid-sentence and makes the whole room laugh. He has opinions about food, strong feelings about football and basketball, and a memory for details that would put most adults to shame. A lot of person in one person.
We celebrate birthdays in our house, and while we try our best to follow a healthy, nutritious diet, we splurge a bit in May. There is cake (negotiated, planned, celebrated), candles, and a mom who cries a little when no one is looking — because every birthday with a medically complex kid is a milestone you don’t take for granted.
May is also when I share about PWS and NF — not to lecture anyone, but because awareness and advocacy are the bridge between “I’ve never heard of that” and “How can I help?” Every conversation, every post that makes someone Google a word they didn’t know yesterday — that is advocacy, research funding, earlier diagnoses, and one less family sitting alone, wondering how they’ll get through this journey.
The heartache part
I won’t pretend May is only peonies and cake.
This spring brought several Individualized Education Program meetings, the kind that require a binder, a deep breath, and lots of coffee. If you’ve sat at that table, you know. You advocate hard. Sometimes you succeed in getting your child what they need; sometimes you don’t, but you don’t stop.
Rare disease parenting can be lonely in ways that are hard to explain to people whose kids fit the standard forms. Especially when you have a boy who loves sports and wants to play on a typical team, but never will. Most of the world has never heard of PWS or NF (let alone a child who is living with both, plus autism). Combine them, and you’re writing your own medical textbook in real time, in a language nobody around you speaks.
And yet, every May, somewhere on the internet, another parent types “PWS” or “NF” into a search bar for the very first time. That parent is who I write for.
If you are new to this journey, please know that you are not alone. You are not the only one Googling at 2 a.m. Find your people — the PWS families, the NF families, the rare disease community that gets it without you having to explain. We are out here, and we save each other regularly.
What the peonies know
Every May, those peonies come back. They don’t ask permission. They don’t apologize for being heavy. They just bloom — beautiful, and exactly on time.
That’s what I want this month to be. A reminder that celebration and grief can share the same vase. That awareness is love made public. That Jake — my funny, brave, chromosomally interesting kid — is worth every hard meeting, every awareness post, every bouquet I cut and bring inside.
Happy 16th birthday, buddy. Happy PWS and NF Awareness Months to our community.
And to the peonies: Thanks for showing up. Again. I will be forever grateful to my grandmothers for these flowers (and for the wonderful memories). I hope to pass them along to my kids someday. If you have peonies in your yard, cut them and share them with someone who may be experiencing a tough May.
For parents on this journey, remember you are supported, loved, and strong!
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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