With Mothers’ Day approaching fast, my heart beats fast for THOSE moms. You know. THOSE moms. The ones who don’t really get a Mother's Day celebration. The ones who never-ever get a mommy break. They don’t even know what that means. The ones who live across the world and hide with their children so as not to be kidnapped, raped, or sold into sex slavery. The ones who live on the 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
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
The Burn
Inhaler of newborn smells I’m going to burn up this year. My favorite Equinox instructor (and my friend), Rebecca, always tells us, when we are dying in her hard-core fitness classes, that the burn means that change is happening in our bodies. We want that burn. We need that burn. Even if we are screaming and whining like little girls on the inside. She always reminds us we can do it and Continue Reading
A Raw and Honest Love Letter
Dear Sweet Mama, You have been given an incredible, amazing, and heartbreaking gift. You have been given a child with “special needs.” The needs could range from severe allergies to severe handicaps and/or anything in between. Not that there is a spectrum and your story is worse than another’s mom’s story. Or her story is worse than your story. You just each have a story. And a journey that Continue Reading
Still No Tears Over Sandyhook
I am surprised at my reaction to the Sandyhook tragedy. Or my lack of reaction, in terms of tears and sadness and heaviness. For anyone who knows me, I am a touchy-feely girl who cries at sappy commercials and gets choked up EASILY at others’ joys or woes. I FEEL. I LIKE TO FEEL. I go to movies that are contrived and emotional because I like to FEEL things. Last Friday I was in a meeting Continue Reading