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.
*****
May 6, 2010
Oh, my dreams. They are awful. It reminds me of PTSD or at least what I have heard about PTSD. You get to a place managing a chronic disease where life seems normal and to everyone else, you look like you are healing and moving forward. But your psyche, (or whatever you want to call it), is very scared and damaged.
I woke up about a month ago and Ayrie’s breathing was so unusually quiet that I thought he was dead. It was an automatic & subconscious thought and once I woke myself up completely I knew that he wasn’t dead, but my heart was racing and I had to walk over to him and put my hand over his chest none the less.
Last night I dreamed that he was dead, on a ventilator and I had to know decide when to ‘pull the plug’. I was devastated, heart broken, frozen… I tried to rationalize it, telling myself that people lose their loved ones all the time and have to make this hard decision and life goes on. But I was feeling absolutely crushed that I was losing my son. And what’s worse? I had this dream multiple times. I kept waking up part way and trying to clear the dream from my head but it was like the dream had a grip on me and kept pulling me back.
I another dream I had to kill my younger son. I don’t remember the specifics but I think its related to my guilt over the amount of attention that I sometimes need to give my older son with JORRP and worry over the impact that it will have on my dear, sweet, goofy 2-year-old.
In many ways I am a laid back mom. I let my kids climb too high, stay up too late and run too far ahead of me one the sidewalk. I encourage their independence and put everything at their level so that at 2 & 4 they can pick out their own clothing, get themselves dressed, prepare their own snacks, find towels to clean up their own messes, etc. But JORRP has taken a sense of security from me. I am still laid back but I am scared and in the back of my mind I can’t help but think that we haven’t experienced the worst yet.
April 30, 2010
Ayrie and I traveled to Boston from Minneapolis this week for Ayrie’s 20th surgery. He’s still seeing Dr. Hartnick at Mass Ear and Ear, a Harvard teaching hospital. Ayrie has received three avastin (Bevacizumab) injections since July and has been taking propranalol orally twice a day for the last 25 weeks. It’s been 13 weeks since his last surgery and our life has not been so normal since diagnosis in January of 2008. And there were fewer tumors than ever before. So all in all, fantastic news! But I’m not as over-joyed as I could be. I’m also caution. This disease has a way of doing the unexpected.
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.
September 18, 2009
Friday night and I am sitting in a hospital room. It’s Ayrie’s 16th surgery but I’ve lost count of the days and nights we’ve spent in hospital rooms so far. It’s strange though. It’s such a part of our life that it seems normal and I no longer climb the walls waiting to get discharged. The view from the MEEI hospital rooms is one of a winding Charles river with sail boats, rowers, sunsets, museums, bridges and a a sparkling sky line. In other words, beautiful. I look out the enormous windows and scene and feel centered. A also feel that we are cared about and respected here which makes me feel stronger, assured that we are not alone in the battle against this tricky and elusive disease.
The last two weeks have been so busy that I haven’t had time to think about anything other than getting through the day, meeting deadlines and moving our lives forward. I experienced the high of starting school and the low of realizing that we needed to go back to the hospital so quickly. The energy surge of reconnecting with the academic part of my brain juxtaposed against the exhaustion of staying up late to do homework and waking up early to pack lunches and empty the dish washer. Yes, I’m a single mom in a PhD program and after two weeks I think that the plan is a little bit crazy and a little bit brilliant.
Shiya’s language exploded the last time I was away. He started being able to answer ‘yes’ and ‘no’ questions with a lot of understanding so I get sense of all of the things he actually knows. And then each day he says 2-3 words that I didn’t know he knew like ‘dolphin’. They are going to start at the University of Minnesota’s Child Care Center on Monday which will hopefully prove to be a good decision.
