Wednesday, February 24, 2010

Thriving Thursday

When I was first diagnosed with Neurofibromatosis, an overwhelming sense of fear came over me. I wasn't some child, who could run to her parents for protection. I was an adult, who had children of her own.
I was left feeling an overwhelming sense of guilt and shame. I knew what NF was, in fact I had a head full of knowledge about it. I even had the birth marks and tumors all over my body, that proved without a doubt, that I had this dreadful disorder.
But I still denied my NF, like it was some deep, dark secret, I never wanted to let out... And if the Drs hadn't said anything about---then why should I worry about it? But now a Dr HAD noticed... I was left feeling exposed and lost.
Three of my other children had already shown signs of possibly having NF too, but the Drs always passed it off as nothing. I was in deep denial. I love my children so much and would never want to pass on a serious and aggressive monster like NF. I never regretted my decision in having children ... and still don't. But even with my "head full of knowledge" about NF, what I didn't understand was ins and outs and the real seriousness of Neurofibromatosis.
I saw my brother grow up with NF, sure he was sick, but NF was never explained to me. I never knew what was happening to my body or how I should deal with my symptoms. I was never told I had NF and was always afraid to mention any issues I was having. I also learned that my mother's "bumps" were because God hated her and was punishing her for being evil.... and now the bumps were beginning to appear on my body.
I was scared and afraid of NF, but none of the Drs ever seemed concerned. I had 5 pregnancies before any doctor would ever mention NF to me. I guess you can call me lucky. Or I guess you can say, I just ran into some really ignorant doctors. The tumors were there, no doubt, but I went 33 yrs before they were noticed.
In 2007 - I got my wake up call.
I am a mother who has Neurofibromatosis. I am not ashamed. I am not hiding anymore. I live and breathe for a better tomorrow. I THRIVE, so that my children see their mother walking proudly, even with a diagnoses of NF.
I refuse to hide in the ignorance of others. I will teach my children -- Even the children without NF to WALK - and TALK PROUD about NF.


1 comment:

  1. Kristi,

    You are such a talented writer. You experience can help so many others with NF. Your feelings are those shared by all of us.