There are very few things about NF that are constant. Research is finding new things all the time, the body is being affected differently and with new things as the years go by. There is just no way to know anything aside from the fact that you won't ever know. But there is one thing that is constant and guaranteed. Appointments.
Most people with NF are followed by either a neurologist (Abigail sees one) or geneticist, an ophthalmologist, and a primary care physician who does checks of blood pressure and for scoliosis. Some people with it have other doctors depending on what all is going on with it. Abigail also sees a developmental pediatrician as well as having an orthopedist on the back burner.
And the thing about all of these appointments (most of which are either every six months to annually) is that they creep up on you causing you more and more dread as the days pass. By the time the day of the appointment comes about you've been nights without sleeping well, and are certain you see signs of _______ (fill in the blank). And most of the time you go to the appointment, everything is fine, and you come home and breathe again....for a little while.
In case you haven't guessed it we have our appointments rapidly approaching.
Between Abigail being in the hospital, and my husband filling in for his boss while he's out of the country, things have felt a wee bit chaotic here. So today when the robot called me to remind me that Abigail's ophthalmologist appointment is Wednesday morning a whole two weeks worth of worry slammed into the side of my face.
I'm pretty sure she is fine. But then I can never quite let go of the numbers....one in five children with NF have an optic glioma. They usually appear before the age of four. And so those stupid numbers whisper to me reminding me that she could be the one.
You know what's silly though. That number that whispers, it never reminds me of the four children who don't have them. It doesn't tell me of the studies that show that possibly black people are less likely to get optic gliomas. It forgets to remind me that Abigail has been to the ophthalmologist three times already with nothing showing up, nor does it let me know that she shows no signs of an optic glioma.
Nope. Just like the appointment that was so sneaky, the number, they are sneaky too. They want me to only know the yucky part of things. Those numbers want me to live in panic and fear. But lets face it, we have already been met with one of my fears, and I didn't fall apart when I found out she had a plexi. My life didn't stop. Nope.
All that happened was that we now knew, and we moved forward with what we thought to be best for our daughter. And if I really allow my brain to slow down and think rationally, even if we walk into that office Wednesday, and they find signs of something, we will continue to life. The only thing that will change will be knowing.
We will still eat lunch at McDonald's. We will still drive home together and giggle at the larger than life Nestle bunny drinking chocolate milk. We will play games, read books, color, laugh, get frustrated, and have to send Abigail to time out. Sure things will be 'different,' but they will be a same sort of different.
So I'm going to do my best to not let the thoughts and fears take over my life the next few days. Instead I'm going to make an effort to remember to enjoy being the Mama of a two year old who is so wonderful. I'm going to lay down tonight and sleep well. I refuse to let sneaky things ruin my week.
Resting peacefully in the One who holds her life in His hands,
P.S. We are working on setting some more things up on the web to make Abigail's fundraiser more far reaching. Right now we have a twitter account *hopeforabigail* and will soon have a facebook page with the same name. Look us up, follow us, and feel free to share our badge on the right hand side of the page!