Wednesday, April 14, 2010

True Life: I have NF

A few of the pictures our friend took. Abigail LOVES the camera...and she is just so beautiful!

I thought I would mention that MTV did a show on NF. It was their show True Life, and the one Monday night featured the genetic disorder Abigail has.
We don't have cable, so if I wanted to watch the show it would be me looking it up online, and choosing to watch it. I watched about 5 minutes...maybe a little more. I decided I was done. Jason watched it while I was gone last night. He is a very level headed man. He keeps me grounded often when I become fearful about the future. When I came home he said "you shouldn't watch it."
However he also talked about a few things that hit him. I told him why I quit watching it. There were three kids featured. They were all three teenagers, and for the sake of making the show interesting I'm sure, they were all on the severe side of the disorder. Two had NF1, and one had NF2. They didn't feature the third type of NF (Schwannamatosis).
Jason said it was hard for him to hear that both of the two with NF1 (who both had a noticeable disfigurement from a plexiform tumor) didn't start having noticeable things until 7 or a little older. He (and if I'm honest I) somehow still believe that since Abigail doesn't have anything yet, that we might just escape with the minimum. But in reality, we just don't know.
The hard part for this female and mama. Watching, and hearing the kids talk about the emotional aspect of it. Feeling ugly, getting made fun of, being frustrated with the pain and limitations the tumors had caused them. My baby will likely walk through some of these same issues. I couldn't bare to think about it. It's too much.
Watching the camera.

So there's my take on the show I guess. I'm glad they did it to get the word out about NF. I'm thankful they didn't give false information (although they did refer to it as a disease, which it is not). But it's not the best thing for the parent of a little one with NF.
I have to say that although the show left me in tears, and the last few days I have started to feel that sort of sorrow of it all settling on me, I still am not anxious or worried. I am not freaking out about our appointment, even though there are a few things that have come up. I have accepted that worrying about them will steal the joy of the next week. The appointment will come, it will pass, and we will know. But for now we are going to have dance parties, play outside, and spend as much time as we can trying to smile and giggle together. You should go play, laugh, and love with people who are important to you too. :)

Papa and Abigail being silly. Papa is laughing really hard if you can't tell.

The joy of the Lord is my strength,

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