Thursday, February 19, 2009

My Story

I grew up in your typical home. Parents divorcing by the time I was 7. A family split in half. My dad took 2 of my brothers, while my mom got me and my other brother. It wasn't until my adulthood, that I understood the reasons for this.

Mike and I were rejects. My father couldn't accept Mike and I, well I was a girl, and he didn't know how to deal with me.
Before the split, I remember a lot of hospital visits, for Mike. I also remember the night, I thought Mike was going to die...We were all camping out in the living room, the rain pouring down outside while we made popcorn and stayed up as late as we could watching TV. I do recall falling asleep, that night, and being jolted awake, by my mother screaming. Mike was throwing up blood all over the living room.

When Mike was 5 yrs old he went in for his Kindergarten exam, and it was found, that he had very poor vision. Further tests showed, Mike had an Optic Glioma. Not much was known about NF back then, so it was never mentioned until years later.

Anyways, they treated Mike with radiation and he ended up blind in his right eye. I'm not sure why they treated the tumor this way...and can't grasp why on earth more isn't know about NF.

As far back as I can remember, NF had never affected my life. I grew up normally, had boyfriends, wore bathing suits, and aside from being a bit chubby, was your average girl. I knew about Mike....I also knew my mom had some issues. My mom would always brush off my questions though. I remember one day, I asked about the bumps on her belly, "Don't worry honey, they're my bumbs, and you won't get them".

NF was never on my mind, and never a concern. And still, to this day, even knowing now I officially have NF, aside from some annoying symptoms, I'm ok with it.

Some people have asked me, why I have so many kids, when I have this disease. Well, for one, I wasn't officially diagnosed, until the 38th week in my very last pregnancy, when NF decided it wanted to "come out". But I have no regrets, and would have 50 more kids, if I could.

I have found that 3 of my 6 kids show signs of mild NF. This breaks my heart, but at the same life is fullfilled. My kids are happy and healthy and I vow to show ALL of my kids, that they are no different than anyone else.


  1. Hello, I found your blog on google reminders on sites dealing with NF. My son has been diagnosed with NF and I have been looking for other blogs to relate to as I had never heard of NF before this. I enjoyed reading your story.

  2. Hi, your blog gives me a lot of hope. You must be a lovely person. Hope I will one day be as strong as u and will say "f**k off" to NF!

    Keep being the good mom and wife. The wheel of fortune goes round and round, and one day, we will find peace thanks to the uncredible work search s doing for us.

    Take care


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