Posted Saturday, February 23rd, 2013
One of the many things that happens for families when a child is sick is that their former social relationships change. I think it takes awhile for a parent to let go of only seeing their child as “ill” and so there is this idea of binocular vision, a kind of double vision of what was, and what is now.
Ebb and Flow
Posted Tuesday, November 13th, 2012
As I walked on an early summer day in South Florida, I listened to Duncan Sheik’s “She Runs Away.” I caught a phrase about “symptoms” and then “the darkness comes and the darkness goes,” followed by “happiness ain’t never how you think it should be so.”
Chelsea’s Fantastic Surfing Adventure
Posted Friday, September 28th, 2012
On Saturday September 15, 2012, I went surfing for the first time in my life. I had the most fun time ever. I was there with a bunch of people who also never surfed before; most of them paralyzed or with a disability. One of my friends, Daniel, went with me along with my sister Bri and her friend. My Mom and Dad were also there and everyone got to surf.
Those Precious Minutes
Posted Monday, September 24th, 2012
During my daughter Jillian’s 10 short years of life, she required quite extensive medical care. Based on my calculations we wasted over a month of time getting care in the traditional model (traveling to the clinic, finding parking in a crowded parking lot, waiting at the clinic for the appointment, having the appointment, waiting for the blood draw, waiting for the lab result, traveling back home, etc., etc. I haven’t even factored in the anxiety and stress attributed with going to the hospital and being admitted at times.) Over 4,000 minutes lost.
Posted Thursday, August 2nd, 2012
We returned from our most recent tour of hospital duty to a fridge full of moldy food, three bags of laundry and a desperate phone call from one of our volleyball team mates telling us that they would have to forfeit another game if one of us didn’t come. Cancer is soooo inconvenient.
Posted Thursday, July 12th, 2012
Nothing was typical, and I had to learn to adjust my expectations of what a good day meant for our family and to view life with a more mature perspective. Because my childhood was so different from Jillian’s,
I wrestled with wanting to give her experiences that weren’t really important to her.
Posted Tuesday, June 19th, 2012
Creativity is defined as “the ability to use the imagination to develop new and original ideas or things, especially in an artistic context.” Constructing an origami bird out of a bed sheet would have been easier. But every day parents are stretching themselves in ways they never could have imagined in an effort to save their children’s lives. It would be easier to lie down in front of a bus, a quick, permanent sacrifice. Yet, daily, we persist, using our creativity to encourage clinicians, advocate, and get out of bed even when we’re afraid and overwhelmed. It’s called parenting.
Happy Father’s Day!
Posted Saturday, June 16th, 2012
My dad is the nicest person ever. He tackles me with hugs. He takes such good care of me. He picks me up and helps me get ready for the day. When I can’t sleep at night my dad stays up with me and while I try to fall asleep he watches TV in the den on the lowest volume.
In The Trenches
Posted Tuesday, May 22nd, 2012
Our world shrinks with each hospital admission. You’re finally home from the hospital, the laundry needs folding, dog needs walking, yard needs watering. Your message machine is swearing at you from the corner of the room; Clinicians need to be called, Pharmacy needs to arrange pick up, Relatives are concerned, Friends are making guesses as to your whereabouts and threatening to send out the search dogs.
Why I’m Invested in the Coalition
Posted Tuesday, May 8th, 2012
This is a contribution by Jim Santucci, Chair of the CHPCC Family Advisory Council. Since my daughter’s death in 2008, a passion I have is to serve families with children who have special needs and complex medical circumstances, including situations requiring palliative and hospice care. I truly desire to help their journeys to be as smooth