Skip to main content

First post from Cleveland. Countdown to Hemiversary.



Untitled

Journal entry by Lisa Rossignol — Mar 22, 2008


We are in Cleveland....never thought life would take us here. What a gift it has been, though. The Ronald McDonald's House is a large, beatiful building that has offered us a large, clean room for four for a measly $20/night. The other hotels near the hospital run $72-$225/night. Different community groups come in each night and cook all of the families dinner. It is usually pretty yummy but no green chili here. 
We have been here one week and it really doesn't feel that way. When we stepped off of the plane, we stepped into an alternate, fuzzy universe where nothing makes sense-nothing sticks. It is a nice sort of mental holiday. 
The first few days got to me because Lily was so unhappy having all the EEG leads glued to her head that she just cried and cried. Also, this is a hard culture. You know that everyone in this house has a really sick baby and during meals everyone makes rounds to find out what the other family is here for. Some people are getting miracles, others are getting heartbreak. 
But you never saw a stronger group of people. Just taking what life gave them and making the best of it. 
Tomorrow we go to meet Dr. Bingaman. You can find a picture of him at ccf.org and search for William Bingaman. When people talk about him, the heavens open up and the lights go on and angels fly. People really speak so highly of him.
The Cleveland Clinic is 6 blocks wide and so impressive. Everyone knows who Lily is, what her diagnosis is, where we are going next. They are just so "on it". 
I don't know how well we will do keeping up on this once we get into surgery time but we will try. 
Miss you guys.....Love, Lisa

Comments

Post a Comment

Popular posts from this blog

Mudd Volleyball

Every year for the past 17 years thousands of Albuquerque residents filed into the South Valley to stand knee high in muddy water and play volleyball. Teams come dressed in themes and there is a contest for 'Best Camp', 'Best Costumes', 'Best Fundraising', and of course 'Mudd Volleyball Champion'. All of the proceeds go to benefit the Carrie Tingley Hospital Foundation. I worked for a company a few years ago that was a sponsor so we had the VIP tent and everything was taken care of. All I had to do was show up and play. It was amazingly fun.    This was our first complete Mudd Volleyball experience. My husband and I had decided to buy a team because the registration is 100% tax deductible and as small business owners we had to increase our charitable giving for the tax incentive. The reason we chose this charity is for the fact that a few months prior, by the recommendation of our 4 year old's physical therapist, the Carrie Tingley Hospital Fo...
Post a Comment
Read more

Can't find gainful employment so I guess I will just...

I moved from a career in advertising and marketing to advocacy in 2009, after my first child was born with multiple disabilities. I worked for peanuts for much of that time, got a master's, part of a phd, published in prestigious journals, traveled the world, but could never convert all of my experience into a well paying job or really, the kind of respect in my field I had hoped for. So, in February 2018. I gave up. I removed myself from all policy and advocacy positions, took on some odd contracts, and mostly just committed to enjoying my newfound freedom. The internet is full of great ideas to pass your time. Time, combined with a degree in sculpture, and a very small budget, I have been able to do some fun stuff. I'm not sure if anyone will be interested in the things I am doing, but thought I'd put it out there, just in case there is another person like me, milling around the inter webs, looking for inspiration. <3 Let's get weird!!!
Post a Comment
Read more

It Should Get Easier

This was my second attempt to write a paper for the same social science journal.  The reviewers had been disturbed by my anger and felt that I wasn't giving the various healthcare providers the same empathy that I was demanding. This time i attempted to just describe a single day--an afternoon really--of care for my child and ALL of the thoughts, memories, experience that occurred during a three hour period. What I learned, unequivocally from this round of reviews, is that my voice has no place in that journal and that is okay with me. Lily and I arrived at the children's rehabilitation hospital at 1:15 PM on a hot July day. I had been on the phone for most of the day with the pharmacy, Lily's behavioral therapist, the United State’s Social Security Administration, the public school audiologist, and our insurance company. Lily had spent the morning at my mother’s house playing with her little sister and six girl cousins. I was refreshed from a long weekend for the Four...
1 comment
Read more