Just a little heads up, this post might feel like a little bit of a downer. But if you stick with me it won't end leaving you feeling depressed (hopefully).
There's this idea that everyone with young children with NF hold onto. We all hope and talk about the fact that most cases of NF are mild. And although it's progressive, it is still possible that all our children will be afflicted with are the cafe au lait spots, freckling, lisch nodules, and a few dermal neurofibromas.
I'm part of a group on a bulletin board where NF is the central discussion. And it sometimes feels like you sit back holding your breath as friends with children older and younger than yours have things come up. And with each new post of bad news you start to feel like the reality of 'mild' is slipping threw your fingers. So you squeeze just a little bit tighter.
When we found out about Abigail's plexi there was a flash of a reminder in my brain that something coming up this early could mean a not mild case. But I crammed it hard into the back of my head, punching and kicking it to let it know that I would not allow the what ifs to take over.
But here I sit today thinking of lots of things and wondering what the future holds. I've been sharing the logistics of NF a lot lately because of the upcoming surgery and trying to raise money. Whenever I describe NF causing tumors to grow on nerves I always have this little phrase that I don't write/say out loud. Your spinal cord and brain contain lots of nerves. And at no point are we 'out of the woods' when it comes to those things being possibilities.
So as I was sitting and writing about NF to someone earlier I had one of those gut wrenching moments of wondering how long we will have out sweet little bug. Perhaps this plexi is all she will ever have, and she will live to see her grandchildren and great-grandchildren. Perhaps the headaches she has started getting are just part of the normal NF headaches that kids get. And then maybe not.
And as I sat with my eyes filling up and my heart hurting, I was reminded of why it's important to make memories now. Reading the same book for the millionth time might be tiring to no avail, but it's what I'll do while she is here with me. And it's not because I think she is going to die, but because one way or another she will some day be gone. So I will leave you with the lyrics of a song that means a lot to me; especially with a little girl who loves her Papa and dancing.
-Steven Curtis Chapman
She spins and she sways
To whatever song plays
Without a care in the world.
And I'm sitting here wearing
The weight of the world on my shoulders.
It's been a long day and there's still work to do
She's pulling on me saying dad I need you
There's a ball at the castle and I've been invited
And I need to practice my danging.
Oh please, daddy please?
So I will dance with Cinderella
While she is here in my arms
'Cause I know something the prince never knew.
Oh I will dance with Cinderella
I don't want to miss even one song
'Cause all too soon the clock with strike midnight
And she'll be gone.
This is as far into the song as we are with Abigail. There are a couple more verses, one about prom and the other about getting married. I truly hope those verses are ones we get to enjoy with our little girl as well. But no matter what comes we are going to dance with our little girl right now!