The feeling of receiving a diagnosis like Rett Syndrome is indescribable, at least for me. I can remember so many details about that day. Where I was when the news came the reactions of my co-workers, and driving home but everything else is a blur.
I was standing in front of a room full of 9th graders when my phone rang and the caller ID popped up with the geneticist's number. I had been carrying my phone around for weeks waiting for the call to come. Luckily I share a classroom with a colleague and so she watched my room and I went into the hall.
"Emma's results came back, she has Rett Syndrome. Sorry. We need you to come in right away, how about Monday?" "Sure". The caller told me the results like she was telling me that my fedex package had been delivered. Seemed a little callous, but I suppose those calls are hard to make for them too. No one wants to tell you that your child will never get better.
I never knew that your heart could actually hurt. You always hear people say "heart broken", but I never knew a person could actually FEEL their heart break into millions of tiny prices. I never knew your heart could actually break. The crushing weight I felt in my chest was .... horrible. I was unable to breathe and in unimaginable emotional pain. It is amazing the way that the human body can manifest emotion.
The spectacle of a person in an emotional free fall I think freaked out my coworkers and they sent me home, immediately, and told me to take as much time as I needed. Who wants to hang around a human puddle.
I did not tell my husband right away, in fact I think he was one of the last people I told. I carried the burden of the diagnosis alone that day and instill feel like it was the right thing to do. He was at C2E2 with his friends. It is one of his favorite events of the year and I knew he was having a great time. It did not want to take that away from him. Emma would still have Rett Syndrome later that evening. I decided to let him enjoy his day, be carefree.
I notified most everyone via text, I didn't want to talk about it. My eloquently worded text..."Emma has rett". Responses went unanswered. I allowed myself to cry all the way back home but I pulled myself together and put away my tears before walking. I didn't want to cry in front of my baby girl. The rest of the weekend was a blur. I don't remember any of it, really. The only thing I remember is rocking Emma to sleep and telling her that it would be okay and that I would take care of her. I am not sure if I was talking more to myself or her.
That Monday Emma's dad and I went into see the geneticist. I think my mind shutdown while he was talking ......R168x.... Classic.... Severe....grim prognosis.....something about a chick named Marie..... International Rett Syndrome Foundation (IRSF)...... I did NOT leave feeling better.
I sat on the info he gave me for a few days and then started making calls. There are few places I have been and few organizations that I have interacted with that are anything like the Rett Syndrome people. They are organized to an almost neurotic level, it is amazing. What other diagnosis comes complete with a 600 page welcome to our shitty club handbook!! (Not the actual name, FYI) I also called Marie, thank God as she turns out to be the Rett Wizard. If she doesn't know the answer she knows where to find it. I am lucky to have found an amazing number of families that I can turn to for help when I need it. Regardless of lifestyle differences, personality differences, where you are in the grieving cycle that particular day (yes, it can change daily) they are all available to help the girls. At the end of the day it is all about the girls and personal differences are put aside in service of our daughters. I feel lucky, not everyone has that.
I remember being so afraid when Emma was diagnosed. Everything I read confirmed the geneticist's doomsday prophecy. I was terrified to attend the Stroll-a-thon, an annual Rett fundraiser and see all of the older girls. I did not want to see the grim future I'd been promised by the doctor personified. I didn't think I could take it. As it turned out, it gave me hope.
One year later the world is so different, the sun has emerged from behind the storm clouds. There are still days when the sun seems hidden from view but I know it will return. I am no longer a human puddle and no longer paralyzed by fear. I am happy, my Emma is happy and our family is growing into our new life. Some days are still hard, life can't always be rainbows, but we are okay. I have hope I did not have that on April 26th 2013.
I have hope. I have hope for Emma and all of her Rett sisters. A cure is coming.
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