When we found out about Abigail's NF I joined a forum of other people who either have NF or have a kiddo with it. I remember in my first few post everyone telling me it would get easier with time...and not believing them. But here I sit over a year later, and it has gotten easier. And now I say the same thing to the new parents on the forum.
The beginning is hard. Trying to navigate the bomb dropped on your family, grasping at straws of how it might be your fault, maybe you should of noticed something earlier, and how you are certain there is some way that somebody can predict what will happen in the future.
Then you go to a few appointments. You get questions answered, and realize that your child has remained the same. You realize that all that time spent worrying, and stressing is time that is being taken away from enjoying your child, spouse, and life in general. So you slowly begin to let go of some of it, until all of a sudden you realize you haven't had a sleepless night worrying about things in months. When did that happen?
But, as the moms who have been at this for many more years than I have will tell you, appointments ALWAYS bring you back to a place of anxiety; even if it's not as much as it was in the beginning. Because there is the fear that something will be found; that your wonderful kiddo who laughs and brings joy will have a tumor.
And tomorrow is our ophthalmologist appointment. It hit me last night that they could find something and since then I have had that little ball of anxiety resting nicely in my stomach. I of course dreamed that she had a large tumor that grew so quickly we had to start chemo the day we were at the doctors office. Yeap, it's appointment time again.
Thankfully it has only been a couple of days of anxiety instead of weeks. And the biggest part of me is certain she is fine. But this stupid disorder has a grip over people making you constantly wonder when things will turn sour. When will she get her first tumor? Where will it be? How will I react? How will she react? What other symptoms will she have over her lifetime?
But tomorrow will pass, and for a little while we will go back to life as we know it. I will sleep fine again, my stomach will feel better, and NF will be something that may never leave my mind, but it won't encompass my every thought.
Looking forward to Thursday,