Tuesday, March 2, 2010

Why Why Why?

I just love talking to children. You can talk about absolutely nothing, and carry on a conversation for hours! It's really incredible.

After Rachel's MRI yesterday, I stopped to pick up Riker and Brooklyn at Sue's. (She has a child in Rachel's class so we decided to hang out until she got home so Rachel and her could play for a little while)

The kids had fun jumping on the trampoline...Even Brooklyn, who mostly flopped and rolled around, while the other kids jumped high.

When Rachel's friend got home, she ran over...."Hey why weren't you in school today Rachel?" I just sat back and watched as they swang on the swings. (Rachel NOT taking Drs. orders to "take it easy" but she was having fun) "Ohh cuz, I had my MRI..."Rachel replies. "What's an MRI?" ....."Well I have NF, so I get to go in a tube and sleep while the doctors look into my head!" "That's weird, why do they need to do that?"--Rachel just runs off...giggling...."Cuz I have NF!"

I knelt down to Amirra who was very obviously left confused, but wanting to know all about this fun---tube sleeping adventure. I explained to her all about MRI's and how they are similar to Xrays, in that they can "see" into your body....and tell the Doctors different ways to help make you better. She was VERY interested and listened to every word. I told her how Rachel got to go to sleep, so that she was VERY still....and how the camera takes pictures of every little tiny part of your brain. "But WHY....why did she have to do this? Why does she have NF?" I looked over at Rachel who was now bouncing on her bum to her feet on the trampoline and I smiled. "Well, sweetheart, she was born with NF...and the MRI makes sure she has no owwies in her brain." This little girl just looked back at me, still not quite getting it, but at least she was starting to. "Well I think NF is cool, cuz Rachel is cool"...she runs off to bounce with Rachel.

Amirra's mother stood there and wiped a tear from her eye....I had totally forgotten she was there. In that moment of explaining NF to a child, the world just grew smaller. "How do you do it?" she asked me. Even this mother, looking back at me, couldn't fully understand Neurofibromatosis. "So you mean Rachel has tumors? Is that what NF does?" Sue asked. I looked at Sue, square in the face and asked her to look at me. "What do you see when you look at me?" I asked her. Her eyes shifted, and she said "I don't know, I see you." "No...Sue. REALLY look at me." "What am I supposed to see, Kristi?" Shocked that my "obvious" tumors weren't seen by her, I pointed them out. "My tumors Sue, my neck, my face, my forehead. THIS is what NF can do." Slightly lifted my shirt to show my belly tumors. "You know Kristi, okay I see them, but that's NOT what I see when I look at you." I learned a really good lesson yesterday, in that she did exactly what I wish everyone would do. See past the NF, right into the very heart and soul of the person. Talk about an emotional day. WHAM-O


  1. Last week at Bethany's 7th birthday party, my niece, who has pseudoarthrosis of the tibia and will be amputated next week, came over for the weekend. When a good friend of mine came to pick up her daughter, I introduced her to my niece. She told her when her surgery was very matter of factly. My friend looked at me after the girls left the room and said "Well, she's just a normal little girl." My response to her was, "What do you see when you look at Bethany? She has the same thing but is just effected by it differently." It's funny to me that she can see my daughter on a regular basis and know that she has optic glioma in both eyes, a tumor on her cerebellum, and severe scoliosis and accept her as normal because that's what she sees all the time. But the image of my niece who also has NF, but whom she had never seen was completely different. Does that make sense? It's such a part of our lives with the 8 immediate family members that have it that I do think of our family as "normal", it's just a different "normal" than most! You're a blessing to many Kristi! It didn't take me long to find that out!

  2. "Grace" is my blogger name. I'm really Stacey Greathouse from FB!