This is my story. Not my children’s story. I will write when I can and will post the most recent entry at the top. I am afraid this will sound like it comes directly from the pages of a 12 year old girl’s journal. I am afraid that it will sound like a string of cliches. I’m afraid people will judge me harshly. None the less this is my story.
*****
February 6, 2010
This is such a journey! I just found this post on facebook from nine months ago. It was from Ayrie’s last surgery in Chicago, just before we moved to Minneapolis. It’s hard to believe all we’ve gone through in the last nine months both generally and health related. I actually took a stress quiz in one of my classes and a score of 160 was ‘over stressed. I scored a 330! The highest in the class by far. A lot of it was related to all of the changes we’ve gone through.
May 2009
Ayrie’s out of the operating room, but still in a deep anesthesia induced sleep. Everything went well, he didn’t look any better or worse than last time. We have given him 5 cidofivir injections and it’s keeping the RRP from getting worse, but not helping it get any better. He can’t be on this drug long term be cause it has terrible side effects. I need to find an innovate, fearless ENT in Minneapolis who will push the envelope and let us try some experimental therapies.
I just got scolded by a nurse for reading Ayrie’s chart… I guess my own child’s chart is not my property and it’s not my right to read it without permission from the doctors. Our medical system is CRAZY and protects hospitals over informing patients and families. My number one job, as it relates to Ayrie’s health, is to be his advocate. But it’s hard to be an advocate when you don’t have access to all of the information!
So what’s changed? We didn’t establish a good relationship with an ENT in Minneapolis and fly to Boston for creativity, fearlessness, exceptional skill and information. (If you are reading this, have a child with JORRP and are considering traveling to get exceptional care, consider Dr. Christopher Hartnick at Mass. Eye and Ear., a specialty teaching hospital for Harvard University). We are now using avastin and propranalol instead of cidofovir, which are working much better and have virtually no side effects. The system is still crazy and every hospital interprets HIPPA differently. And I am still trying to learn how to be a good advocate for Ayrie, and how to help other people feel like they can be good advocates for the child that they love.
xo
nora
January 29, 2010
I have this fire in me that is burning so intensely that I feel like it will consume me. It’s hungry for meaning. It’s hungry to be loved. It’s hungry for food. It’s desperate. And then I have the part of me that’s numb. Looking ahead is too scary, too joyless, so I am numb. How can feel both of these feelings at once? I don’t know but it makes me tired. It makes me want to quit putting one foot in front of the other. People tell me how strong I am but I really, really don’t want to be strong anymore.
I felt this depressed when Ayrie was diagnosed in December 2007. I felt this depressed in August 2008 when I thought Ayrie might die. I feel depressed now because it’s been two years and the road continues to get harder. I don’t feel hope for what the future will bring.
