Monday, June 18, 2007


Today I found out that my little girl has NF-1, short for neurofibromatosis. It took me a long time to figure out how to spell that word and it's taking me awhile to really soak in the meaning behind this knowledge. Nothing has changed from yesterday in terms of my feelings toward her or my love for her except that maybe I love her more today than I did yesterday. But that's not unusual as I feel that on an every day basis. Thankfully my older guys show no signs of NF. Jack has not been tested yet but that will come in 6 months.

For two hours I listened to a really knowledgeable doctor explain this condition to me. She is one of the best. If you google her you will see how good she is. While she was talking to me and explaining I really felt at ease with what she was explaining to me...that is Kelly has a mild form of NF-1 and that she can live a very full healthy life with no major complications. I thought maybe my imagination was getting the best of me. Maybe it wasn't so bad like eczema or food allergies or asthma. Conditions that are a pain to have but definitely controllable. I listened more to her explanations of chromosomes gone wild and the cell chain that reversed it's links and all of those terms that are meant for people like me who have no knowledge of any word that starts with neuro- and ends with -tosis. There are complications to this condition but we won't know what they are yet because they don't usually show up in kids until the ages of 7-8. There could be tumors that need to be removed, her optic nerve could have trouble, or developmental problems such as speech impairments or hyperactivity. We won't know until later when she has a CT scan and other tests.

Then the realization hit me when she talked about passing this bad chromosome on to her children. Oh my gosh. What about children? The doctor explained that she would be able to have them but that if she were an adult today she would probably need medical intervention to deflect the bad chromosome that she carries. When she told me this I felt my eyes start to tear up. The gift to create life that was given to her at birth might just be altered and that made me sad. How would I eventually explain that to her and how would I handle it? There are no easy answers to the questions that I have right now.

But for now I read her a story before bed and played "Barbies" with her and we sang songs and she was back to being my little girl.

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