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Spencie23 
When the nf1 was first explained to me i have to admit my first reaction was to run away, really fast and as far as what was humanly possible. Then i went through half a dozen emotions all at once, rangeing from total denial to complete dispair. my palms began to sweat my knees trembled and i felt like i was either going to faint or vomit. I didn't want to listen yet i seemed to be hanging on the dr's every syllable. i then began to ask question after question the room span and i wanted to scream at the top of my lungs. my baby was just 5 months old and i was very much a single parent and barely 20. when i got outside i felt like everyone was watching me, my legs were like jelly. all i wanted was somebody to tell me it was a mistake. Eventually word got around and foolishly i thought id have at least one person to talk to. I was so wrong. 7 months later my baby developed 2 large benign optic glioma's and immediately the chemotherepy started. a year on theres still another year of gruelling treatment. yet still not anyone to talk to. im angry at how isolated we are. nf1 isn't the plague and im totally disgusted at the familys reaction. i feel no shame whatsoever about having a child with nf1 but i am utterly ashamed of the people in our lives who completely turned their backs. i have religiously taken my daughter to hundreds of appointments slept on a hospital chair for days at a time in the same clothes and lived on coffee. iv even walked to the hospital pushing her pram when i haven't had the money. she has never and will never be a burden to me. i look back over the past 2 and half yrs wondering how i coped. thats simple. i love her. nf1 will never get in the way of that despite what it throws at her.
