HELP:
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!
THANKS:
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!
WOW:
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.
I try to keep Anne Lamott and Pema Chodron on continuos feedback loop on the cd player in my car. They keep me going when things get bleak. Glad that your man is so thoughtful!
ReplyDeleteI'll have to take up Pema Chodron for my additional inspiration.
DeleteLove your inspiring post
ReplyDeleteThanks!
DeleteI love this post. It is something I try to remind myself again and again. I will have to pick up a copy of this book. I know what you mean about the isolation and pity partying need! How was your trip to PA to see the specialist?
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