A Touch of Scarlett, our journey with a rare bleeding disorder

Originally posted on October 15, 2014 on HFA 's website  http://www.hemophiliafed.org/news-stories/2014/10/infusing-love-taking-care-of-the-patient-the-caregiver/ Infusing Love: Taking Care of the Patient & the Caregiver Categories:  Adult Women ,  Families ,  HFA News ,  Mom's Blog: Infusing Love October 15, 2014 I don’t think I’ll ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with   Platelet Storage Pool Disorder (PSPD) . It was 10:30 AM on a Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that look on her face–you know the one — I’m so sorry! It was Scarlett’s school. I knew she must be hurt. I immediately stopped what I was doing and reluctantly took the phone, frightened of what I was going to hear on the other end. It was the principal. “Kari? Scarlett hit her head. She ran into a pole in the hallway.” She went o...

Last week I was reminded of the fact, that simple things like date nights, couples trips and even Halloween parties at the local gym, usually involve a lot of planning . . . followed by a lot of worries. My husband and I went out to dinner the other night, and once we got to the restaurant, we realized neither of us had our cell phones with us. This sent my husband and I into a state of panic that I'm sure most parents don't endure.  We quickly asked to use a local land line to let my mother-in-law know which restaurant we were eating at, so she could call us if there was an emergency. What would ordinarily be a fun/spontaneous time away from the kids, quickly turned into a reminder of how we are NOT ordinary parents. We don't get to drop our kids off with a babysitter and not have a worry or care in the world.  Instead we are constantly on edge, praying something doesn't happen when we are gone, and always checking our phones to make sure the sitter hasn't calle...