There is something pure about running in the rain. The combination of inhaling nature and fighting nature at the same time is powerful. And…Not to mention feeling all badassery because you are running despite darkness, wetness, coldness. I find this to be true in many aspects of life. In mothering, we find moments of unforgettable beauty like when you see your baby for THE VERY FIRST Continue Reading
Pure
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
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