My inquisitive little 9 yr old daughter began asking questions about why I was going to a hospital "ALL the way on the other side of the planet"...
She knows about Neurofibromatosis, at least she knows her mommy and 2 sisters and brother have it...But I thought I would take this opportunity to teach her a little about the disorder. (I mean hey, that's what we are all trying to do here, right? And you never know, she may just grow up and be the person to discover a real cure for NF)
So I went to the handy dandy Netbook, and typed in WWW.CTF.ORG ( I love this site ) and read to her the definition of Neurofibromatosis. I was amazed at her understanding and praised her for wanting to know more about this lifelong disorder.
As I was talking to her about the tumors that mommy has (glomus tumors) I told her that they cause mommy a lot of pain. "The drs here don't know much about NF, honey so I'm going to a place that knows ALL about it."
"I thought Drs were supposed to know everything though...why don't the ones here know how to help you...?" LOL My reply to that question could go on forever....but, I simply stated that there are soooo many illnesses, and diseases out there and not enough doctors. Which is true.
"How do we get more doctors to know about NF Mommy?" (Dang this girl is smart!) I hugged her and told her, "We just keep fighting, keep talking, and we don't hide from what scares us." She just looked at me and said something that melted my heart...."You're the bravest mommy I know, I will miss you when you are gone."
Another person educated about Neurofibromatosis.....will you take the time today to teach someone about it?
I was recently in Texas and spent the weekend with My Best Friend. She has a 3 1/2 year old who calls me PaPa Jerry. She's becoming talkative and asking questions. I told her about the bumps and showed her a video on NF. SHE SAID THEY LOOK LIKE YOU.
ReplyDeleteI'll be keeping you in my prayers and thoughts.
Happy New Year,
Jerry