My beautiful daughter is facing her own mortality

I am driving over the long bridge over the bay. It is a beautiful Florida day: blue sky, sunshine, shimmering waters all around. My sixteen years old daughter is sleeping next to me in the passenger seat. We are going back home from another test. Three days in a row, and the new reality hits me. This will be her life. Periodical tests and waiting for results. Wondering is this going to be the time when they tell us it’s time for surgery? When they cut her chest open trying to save her life.

I am crying silently, tears rolling down my face. It’s been two months since her life changing diagnosis. Until now this didn’t feel real, I was kind of numb. Now it starts sinking in. I think it’s similar for her. Usually chatty, she seemed more quiet on the ride there.

I feel that I am entering phase of fear. Scared of the future, my daughter’s future, our future. Whenever I am alone, I start crying, sobbing uncontrollably. I cried like that in the past – you cry because of something or someone, then you hit the bottom, say “fuck it”, and you start feeling better, ready to move on.

But there is no feeling better here. You can not say “fuck it, whatever” and move on. This is not going anywhere.

I am on facebook’s support groups for this rare genetic disorder. Kids, teenagers, adults. Many after several surgeries. Celebrating still being alive. Kids proudly showing their school achievements, living their lives as best as they can. Then there are some 50, 60 something who just now learnt they have it, which gives some hope.

And then are farewells, the fucking farewells – to those members who just passed away. All ages. Those posts make my hyperventilate and throw me into crying spasms.

I decide not to check these groups unless I am looking for some information. I need to get that fear and despair under control, before it starts controlling me.

Tomorrow we’ll be looking for a therapist for her. At sixteen, she has to face her own mortality. She let me read her essay for her creative writing class. She wrote about how she was bullied as a child for being an atheist, and how she tried to believe for a while. How now she wishes there was something out there that would catch her when she is falling, but unfortunately she does not think it’s true. She will simply disappear……

We are awaiting for genetic test results for the rest of us. There is still chance that her sister may have it and one of us, their parents. It is quite often that several members of the family have the disease. The uncertainty continues.