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
Because I Deserve It, Right? Hmm…
As I checked my inbox of email one morning, all the retailers notifying me of 30% off deals, all stated in bold caps “YOU DESERVE IT.” And depending on the day or week I’ve had, or the season of life I’m in, I just may choose to agree. Inside I may say “OH, YES I DO!” and start click-clicking away and fill up my cyber-shopping cart with lots of goodies. It is so easy to get into the mentality Continue Reading
Black Toenails
“I am your mother, the first mile of your road.” – Kelly Corrigan I run a marathon every week. Actually, my life is an ongoing marathon. And so is yours, especially if you have a child with a disability, or any type of ongoing medical or special need. As a parent of a child with Prader-Willi syndrome, I put in miles upon miles as I expend so much of my physical, emotional, and mental Continue Reading