Today's post is inspired by a lovely comment I received, from none other than "Anonymous". Thank you 'Anonymous' for helping to cure my writers block-
"Are you for real? You should consider yourself lucky. My son has a REAL disability and the bullshit you complain about is ridiculous. I also live with daily pain and I am basically confined to my bed or couch. What do you have to complain about? Anonymous"
I have it GOOD, because my children don't have a REAL DISABILITY?
It is true that none of my children are in wheelchairs. All of my children can speak complete sentences and eat with a fork. But to tell me that I am lucky?
Do you even know what having Neurofibromatosis means?
It means at ANY moment, our world can come crashing down.
My oldest daughter, her name is Bailey, if you care at all. Is LUCKY enough to ONLY have THREE brain tumors. TWO of those could take her hearing, her balance and possibly her LIFE. The other one...? This is the tumor that put her through TWO years of chemotherapy. Only to be told the chemo didn't work, and her tumors are now LARGER than when we began.
THAT CHEMO....DESTROYED her body. Her spine? Is that of a 70 year old woman. Degenerative disk disease, fractures....Not to mention how weak my daughter became. She has constant...daily headaches. Is dizzy ALL-OF-THE-TIME.
Am I lucky she is still alive. Absolutely!
My son. He's 16 years old and had plexiform tumors throughout his spinal cord. In his left eye....An optic glioma. This tumor may or may not grow...Affecting his vision in an unfixable way. His other eye...We were "lucky" enough to be diagnosed with a very rare retna condition....That, overnight, could take his vision...But YES....You are right....we are LUCKY, that is hasn't.
My 11 year old? She also has NF. Right now, bless her heart....She is LUCKY enough to JUST have minor vision issues and some "spots" on her skin. BUT...she also has Sensory Integration -- which means ANYTHING can set her off into a tantrum. Smells, tastes, sounds, touch....EVERYTHING in her world, is like having a speaker right next to you ear, turned up ALL THE WAY.
But Yeah....I'm LUCKY because Rachel....Has the sweetest spirit I have ever seen. She smiles all the time...And works hard in school...And never gives up.
Oh I almost forgot about ME. I have Hydrocephalus, and a brain tumor....I have tumors growing out of control, all over my body. Dizziness...headaches.....
But. You're right.....I AM ONE OF THE LUCKIEST PEOPLE IN THE WORLD! Know why?
Because I see the world different than you see it.