Tuesday, January 5, 2010
Mama and her snugglebug
I don't know how to describe this funky feeling I have today. It's this nagging reminder that although things seem okay, under the surface something unknown could be lurking. I'm annoyed that it crept in today because Abigail has been herself today in a way that I haven't seen for a while. It has been a wonderful day filled with reading stories, giggling, and singing songs together. And this stupid feeling.
When we were told about Abigail's NF it was ALL I thought about for days. I cried, woke up thinking about it, and Jason and I talked about it during most of our free moments. I didn't think a day would go by without me thinking about it. It did eventually grow less though and there were days where the only time I thought about it was when I saw Abigail's cafe au lait spots.
As we approached the past few months with lots of doctors appointments and some scares it was on my mind a lot, but felt different. Less scary maybe because it was no longer the unknown. It's interesting how my brain works though. Even though I know my daughter has this, because she wasn't officially diagnosed I could push it aside. I could almost pretend that we were not dealing with anything.
So then I get paperwork from insurance and to help us get insurance for children with special needs the doctor made the diagnoses official. It doesn't change anything. We will still do exactly what we have been doing all along. I knew that it would become official in the future. However seeing that paper with the diagnoses of "neurofibromatosis, and lack of coordination" still threw me for a loop.
A few weeks ago we got another paper in the mail from Riley. It was a survey about her MRI. I didn't fill it out. I didn't want to fill it out. They sent a second one and politely wrote that I am not required to fill it out, but they would appreciate the feed back. So I filled it out today.
I sat and cried as I thought about my little girl in that big machine. I remembered what it was like to sit in the waiting room and wonder if something would show up on the scan. I felt some of those same feelings that had washed over me that day. And I thought about the future. How many MRI's will she have? Will they always come back fine, or will they one day find something?
It's weird how little things like this can throw me off so much. I think though that because Abigail's NF is not in our face all the time that I can compartmentalize it in my brain. Then on days something comes up, the fact that my daughter has a genetic disorder pushes it's way to the front of my thoughts and nearly overtakes them.
I don't really know what to do with all of it either. I just spend the day thinking and trying to function. I hope that I "sleep it off" tonight and that tomorrow I wake up ready to face a day filled with different sort of thoughts. What else do you do? I have great friends who can listen well, but I don't want to talk to someone who doesn't understand sometimes. And even talking on days like today often ends with me feeling the same as I did before I talked.
So I spend the day in a funk. I remember to enjoy my little girl more because things are so uncertain. I tell God how much I wish that children didn't suffer and die. I cry. And I push forward with life because it won't stop just because I'm having a hard day.