One night as I was tucking Kate (age 6) into bed, she said, “Mom, what is happening?!” and turned around to show me her mouth, which was dripping blood. I shrieked, “You lost your tooth! Your first tooth!” But then we could not actually find it. We searched her bedding, her pajamas, under her bed, and through the shag rug, all to no avail. She didn’t mind she was so belly-laughing-slap-happy Continue Reading
I Avoid The Mother’s Day Aisles
I still miss my mother. It’s been 7 years and 7 months since she passed away from lung cancer. And I still. Miss. Her. I think of her when I buy new sheets and hear her voice in my head, saying “always buy high thread counts.” I think of her when I buy “half & half” creamer for coffee as a treat and how she poured this over our cereal growing up, like all good moms from Nebraska do. I Continue Reading
I Will NEVER Drive a Mini-Van, and Other Stupid Things I Said Before I Had 3 Kids
I will never yell at my kids. I will never be one of those moms. I will never bribe my kids to invite good behavior. I will never let the TV be the babysitter. I will never drive a mini-van. (I’m too cool for that.) I will never let my kids eat at Taco Bell. I will never let my kids talk back to me. I will never have kids that jump on other people’s furniture. I will never be one of Continue Reading
Ryan’s Birth Story (Part 3)
THE NEW DIAGNOSIS 5 weeks old THE phone call Dr. Flores’ words Chris took call Results were positive Prader-Willi syndrome A lifelong disability Life-threatening illness Scoop up Ryan Hold my baby Cry many cries Chris and me Bonded so closely A new journey A new family Luke, Luke, Luke How to cope What is next? PWCF Director calls A mentor mom A support group Appointment with Continue Reading
Ryan’s Birth Story (Part 2)
THE PEDIATRIC WARD Only few days Actually few weeks Gavage tube feedings Pumping breast milk All the time OT trains me OT is angel More tests run Prader-Willi syndrome? Doctors think not First test negative Second test run Luke with Dad Luke needs Mom Lots of visitors Lots of gifts So much support Prayer, love, care Amazing kindnesses shown Ryan can’t nurse Still can’t Continue Reading
Ryan’s Birth Story (Part 1)
JUNE 27, 2003 It’s a girl No, no ,no It’s a boy Ryan Bradley Patay He doesn’t cry Boy parts wrong He doesn’t eat He can’t suck Mom, Dad happy Mom, Dad worried So many tests Don’t have diagnosis Transferred to “Peds” Mom with Ryan In walks Camille Camille the OT I break down Tears, worries, tears What is happening Why why why Something’s very wrong My baby’s broken No one Continue Reading