If ignorance is bliss, why aren't there more happy people? ~Author Unknown
"Mommy, what are those bumps on your back and tummy?" The response to this question, that I asked my mom, when I was 8 yrs old was met with rage and anger, "That's God's curse Kristi!"
If you haven't read my book, my story is that of fear and ignorance.
Hear NOTHING about NF, because it's too scary, speak NOTHING about NF because we don't know enough, and close our eyes to the symptoms, because we don't want to see the potential problems that NF can cause. Unfortunately, this is how many of those living or dealing with NF, chose to live their lives.
While I was paying for gas this morning, the checker noticed the back of my van, and told me that her son was diagnosed with NF when he was 6 months old.
I was thinking "AWESOME" (not because the kiddo was diagnosed, but because I found yet another person to connect with!)
I asked this woman if she was part of the CTF chapter in Denver...and she responded "NO...and I don't really want to be." Whoa, I thought to myself. She must've had some kind of bad experience. "We keep our son at home, and don't need any help from anyone." she continued. "We've seen drs, and we know what he has, and just choose to keep him away from them."
I (for the first time ever) was lost for words. I understand how frustrated people can get with the medical community. When we don't hear the answers we want, its easy to throw our hands up and walk away.
This woman went on to tell me that her 3 yr old son has a plexiform neurofibroma that wraps around his armpit and neck. "We had it imaged, a year ago, but there's nothing we can do about it, so we just want to have our son home."
We hear that a lot in the NF community - "There's nothing that can be done." When we hear that, we should translate that as "There's nothing we know of that can be done, but others might know more" or "There's nothing that can be done RIGHT NOW, but we need to watch this, and watch out for other symptoms of NF".
If we shut ourselves off to the medical community as a whole, essentially throw the baby out with the bathwater, believing "nothing can be done", we may as well give up totally and give in to this dreaded disorder. There may be plenty that can be done! Research and treatment changes everyday! I can understand feelings of helplessness. I get total frustration, with a world that is ignorant about NF...But why, on Earth play a part in it?
I have been told a hundred times, that with my hydrocephalus and brain tumor....that "nothing can be done"....but I refuse to just roll over and take that as the final answer.
I won't let the doctors who choose to not go the extra mile in my case, stop me from finding a doctor that will.
I will not teach my children to give up, just because someone tells them no.
It is OUR responsibility to fight for what we need and deserve. If we cover our eyes, we will fail to see all the good and all the potential those with ANY disorder have. If we cover our mouths, we fail to speak out and share with others about NF. And if we cover our ears, we fail to hear about new treatments, new studies, and new ways to get involved.
Thrive On!
