Dear Whomever Marries Luke and Kate, You have been given a sacred and very prepared spouse. Each of them is overqualified and overjoyed to share life’s adventures with you. Any adventures. They can roll with what life hands you along the way. You see, for decades, they have loved and lived with their disabled brother. They have been Ryan’s cheerleaders and champions. His Continue Reading
When I Look At Him
Long, skinny limbs outstretched, mouth open, breathing loud. Not quite a snore. His own sounds. It was family movie night and of course, Ryan lasted half an hour before he was asleep. I just stop and stare sometimes. I drink in his innocence, his sweetness, my boy who’s both so polite and a pain in my heart. I think about his brain, all wired wrongly thanks to missing parts of Continue Reading
The Air He Breathes
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
I Would Die of Parental Happiness If…
These range from silly to sappy to serious, and some even totally unrealistic, BUT---a mama can wish and pray and hope. Because that is what we do. I would truly die of parental happiness if: My daughter would wake me with hot coffee every morning. And then get in bed with me to snuggle. My kids would learn to use a towel more than ONCE. The laundry piles up so fast, and right 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
When We Are Forced to Tell Lies
It’s not something I am proud of. It’s not something I ever wanted to model in front of my children. But I do lie. I have lied. I will continue to, I’m sure of it. Because, it is part of surviving this life with Ryan and Prader-Willi syndrome. I have even encouraged Luke and Kate to lie, and be sneaky. It’s all to protect Ryan from his anxiety--getting triggered and having Continue Reading