My 13 year old daughter looked at me, after I told her I was going back toNIH (National Institute of Health) -- "I wish I had NF, like you, so that I could go with you."
Her eyes filled with tears and I just hugged her.
She had no idea what she was really saying, she just wanted to be close to me. But her words melted my heart.
What frustrates me is that she DOES have NF - but like me at her age, she doesn't appear to have any remarkable symptoms other than the cafe au lait spots. Dealing with Rachel and Braden seems easier, since they have specific needs to address, but I battle with getting Bailey fully checked out, for fear of what we might find.
It may sound stupid coming from someone claiming to 'Thrive with NF', but I battle with the same sense of denial about Bailey that I battled with for years about myself.
We've got her scheduled next year for some initial tests, and hope to get some answers. I know she has NF, and I've told her she does. It's time for both of us to discover what that will mean to her future health, instead of hanging on to the hope that it'll just go away.
Thriving isn't easy. It isn't always consistent. It's a goal to live up to - an attitude that must be reinforced. The nice thing about Thriving, though, is that even when you fall off the wagon for a day, or create a blind spot in your journey, all you have to do is take a new action to get right back into the zone.
I pray Bailey never has to go to NIH, or deal with the many issues I and so many of you struggle with every day. But if she does, I want her to know that I AM here for her - eyes wide open and Thriving attitude in place.