It’s his very own. It’s not like yours and mine. He thinks about it. ALL the time. Our air gives us life and breath and oxygen and growth. His air could lead to death. In Prader-Willi syndrome, at some point in childhood, hyperphagia sets in. Hyperphagia is experienced as a chronic hunger, or never feeling full. It’s an obsession with food, which leads to excessive overeating, and a Continue Reading
Pretty on the Outside But…. (a repost)
This is a repost from a well-received, well-loved January 2014 blog post. Note: we did NOT--for the first time--send out a card for this past Christmas. We can just use this one. HA! We haven't changed that much--except for Luke, age 14, who towers over me now. Don’t judge us by our Christmas card. We look pretty perfect. Like the quintessential all-American family. Don’t Continue Reading
12 Things I Would Say to a Mother of a Newly Diagnosed Baby with Prader-Willi Syndrome
1). Congratulations on the birth of your beautiful baby boy (or girl)!! Your child has made you a mother and has created your first dose of family life. (Or if this baby is a 2nd or 3rd child, I'd say), Your family has grown to contain more love, joy…and diapers! 2). You are NOT alone. You have a community of mothers, parents, families, and professionals through your local Prader-Willi Continue Reading
Why Mama Got Herself a Tattoo
It sounds like a country song. Of a crazy-exhausted mom in the middle-of-her-life-crisis needing to rebel and do something wild. Yes. I totally get that. But that is not my story today. I never thought I would get one. I never wanted one. Until now. Several reasons drew me to this place of wanting a tattoo. Actually needing a tattoo. Now. Last summer I had an “AHA moment” on an Continue Reading
7 Things I Learned From Going to Amusement Parks
1). Don’t ever wear WHITE clothes. Just don’t. Even though I am out of the sticky-gooey-small-fingers-all-over-me-stage, I should have known better. It’s the law of motherhood. Either they spill or I spill, just simply cause I have little people nearby. Plus if all seats are taken and you are in need of sitting SOMEWHERE, ANYWHERE, you just can’t, in white shorts, that Continue Reading
On Eating Whatever & Whenever
We just complete a FIRST in the Patay Family. We had our very First Family Vacation Without Ryan. Without PWS. Without a schedule. Without a food schedule. Without 1000 questions per day. Without "what's next ?" and "what if...?" and all his bless-ed anxiety. And it was weird and surreal and calmer and easier, and yet not having him with us was a little palpable. We were Continue Reading