My daughter has a rare disease, and she is most likely going to die sooner than the rest of us. This is my daily reality, and I’m pretty sure it scares the hell out of most people. Sometimes I don’t feel as if I have many friends, and my family is far flung. The search for new Personal Care Assistants is a constant project. I feel isolated--deeply isolated, and I can turn into a mean and angry depressive. I want someone to throw me a raucous pity party! We’re making a trek to Pittsburgh’s Program forthe Study of Neurodevelopment in Rare Diseases this next week to see the one key specialist in the country for Sylvie’s disease. Perhaps there will be no new information garnered from this visit, but it’s one attempt to reach out for assistance in dealing with my daughter’s medically fragile condition. HELP!
Sylvie’s snot has subsided! Rejoice! For now, the suction machine is put away and she’s back to school to hang out with her peers. Last month I wrote about the mystery Santa we had last year. Well, more anonymous gifts appeared this year on our porch the day after Christmas—boxes of wrapped gifts for the entire family, including more coffee for my man. Apparently these gifts had fallen off Santa’s sled. We received two unexpected monetary gifts in the mail from good friends and one of my far away cousins. One of my mentors and new friends gave us a lovely gift certificate to a nice restaurant in town in hopes that my sweetie and I can go out on a date soon. I live in a town and a state that not only adores but lives for large piles of snow, and the huge snowstorm we got earlier this month caused great exultation! THANKS!
My little girl was giggling so hard and loud last night at the dinner table that she made the rest of the family smile too. She thought it was hilarious when we put a mirror to her face to show her how silly she looked in her papa’s winter elf hat. What music to hear that child laugh with clear lungs and bright eyes. My beautiful twin girls turn seven in a couple of weeks and we’re planning a giant birthday party based on C.S. Lewis’ The Lion, the Witch and the Wardrobe classic. Narnia is a fantasy world of magic, dwarves, talking animals, an ice witch and Turkish delight, where children have great adventures. In the last 3 weeks, our family has read six of the seven books of the Narnian Chronicles. Hurray for great children’s literature and wild imaginations. WOW!
When Kirsten isn’t preparing for her twin daughters’ Narnia themed 7-year old birthday, she is a professor of Communication Studies at the State University of New York.