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
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
Why The World Needs My New “Mom Blog”
Because I love being a mother. Because there are days that I don’t. Because I’m not a perfect mother, and will never pretend that I am. Because mothering IS an ongoing marathon week after week. Because I have Luke, Ryan, and Kate filling me up with ideas for blog posts and yet I had no blog. Till now that is. Because I am real, raw, and honest. Because I’m a mom who has more to say then Continue Reading
- « Previous Page
- 1
- …
- 4
- 5
- 6