Never a good thing……

It’s always a bit disconcerting to have medical professionals ask if Mariella has been sweated for CF. It’s even more disconcerting to have a medical professional ask that question on Monday, then find out on Tuesday, that your child was a topic of discussion at a meeting of organizers of the local “Great Strides” walk. (annual fundraising walk for CF) All of the organizers are parents of CFer’s

My girlfriend’s son has CF. He was a miss in newborn screening, and didn’t get a diagnosis until age 4. My friend told me later that she sat in the geneticists office and said, “you’re not supposed to be talking to me, you’re supposed to be talking to my girlfriend…her daughter is sicker than my son.”

We already treat her like a CFer, with quite a few things. She does airway clearance. Her sick plan resembles the sick plan of a CF patient. The cough is often the cough of a CFer. It’s not the answer I want…but you know…sometimes…I think…”Hell, at least it’s a flipping answer!”

Tonight is just a night that I’ve had enough. I was already feeling a little blue because of her vomiting episodes…the fact that I’m listening to her cough in her sleep. Then to hear that she was a topic of discussion at the Great Strides meeting, just set me over the edge a little. I think I just need a good cry.


2 Responses to “Never a good thing……”

  1. 1 Amy March 3, 2010 at 2:49 pm

    Hang in there….that’s got to be tough to hear and even consider as a possibility. Here’s to answers and hooping you get some soon.

  2. 2 Sara C. March 3, 2010 at 3:03 pm

    I always hold on to the fact that her genetic test came back negative. I never found out if the gene is NORMAL, or just not a CF mutation. (something my girlfriend rides me about constantly) I guess that in my quest for answers, I really do have blinders on…since I don’t want CF to BE the answer. I want it to be an easy answer. Thanks.

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