Wednesday, February 12, 2014

You Should Consider Yourself Lucky


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 swear, if I could be given a dollar for the times I have heard something stupid being said to me about Neurofibromatosis, I'd be a millionaire.  I am so tired of having people - (who are trying to get to know me) telling me how "GOOD" I have it.

I have it GOOD, because my children don't have a REAL DISABILITY?

Seriously?

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.

THRIVE ON

11 comments:

  1. Well spoken! And the rest of us reading this are blessed to know you and your family! :)

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  2. Absolutely well spoke. So powerful, tasteful, meaningful and positive. It irritates me the ignorance people have when it comes to their understanding of NF or should I say lack of. You and your family are truly remarkable and I say I am "Lucky" to know you. God Bless

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  3. I COULDN'T HAVE SAID IT ANY BETTER!!!! HONEY YOU ARE AN AMAIZIŃG WOMAN!!!! AND I ALWAYS REMEMBER THOSE COUPLE OF DAYS IN THE HOSPITAL AS ROOMIES. I KNEW THAT YOU WHERE SOMEONE SPECIAL AND ALWAYS WILL BE. FORGET THOSE IDIOTS THAT ARE HATERS AND KEEP ON THRIVING MY LOVE. I MISS YOU SOOOOOOOOOO MUCH!!!

    BY THE WAY IT'S ME SONIA!!!! GLUMOS TUMORS BABY!!!! :) :) ;)

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    1. Love u lady! Hope all is well with you! XO

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  4. I hope "Anonymous" reads today's post. Even though we have never met in person, I think you are an amazing person. NF affects your family differently than it affects Kambi's but you both have struggles. I honestly cannot say that one of you is "luckier" than the other. Kambi started to look up to you when the doctor's found her daughter's tumor. I know that Kambi continues to watch over her family as best she can and I'm sure she is watching over you and your family Thrive On!!!

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  5. Haters gonna hate, aren't they, Kristi?

    I love it when your hubs posts links to your blog and always enjoy your posts. I think you got so fired up because '"Anonymous" came after your kids. That's the Mama Bear in you. :-)

    I don't know much about NF, and I don't have to in order to empathize with you. We all go through our own struggles and challenges; some have more than others. If only people could treat each other with compassion...

    And for the record, I don't see your blog or posts as complaining at all. But rather, uplifting. Some folks just want to be the best at having the worst problems. Not much of an aspiration.

    Say hi to Rich from his colleague :-)

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  6. Well said, I admire you so much. I have NF but I'm lucky cause its nothing like you and your kids. You are my hero and reading your comments and stories help me more than you can know. God bless you for you are a truly wonderful person

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  7. What an angry commenter, Kristi dear!!! Dear Annon Commenter: Maybe, just maybe you should do a bit more research on NF before you go spurring your own frustration and hate onto us. I'm sure your son suffers and no one is undermining that. But NF is NOTHING to be taken lightly. I think as a mother with a son with a disability you'd find some compassion. Apparently having a rough time brings out the worst in you. Most parents in your shoes react with compassion and understanding. But I guess you just hate everyone and feel superior to everyone else.
    Don't be that person. Be kind. Be understanding. Be proactive and knowledgeable. Learn about our disorder and let us learn about your son's. Don't be cruel.

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  8. Well said. Thanks for keeping the spirit of hope and love alive, and making this world a better place.

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  9. AMEN!

    Our prayers are always with you and your beautiful children Kristi.
    Thank you so much for continuing to educate people on how to live (AND THRIVE!) with NF.

    Our prayers are also with ignorant and angry posters and that someday they will see life differently.

    Kayli & "Lucky Loric"
    (with ONLY spots to show!) :)

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  10. you are.d___ right ms hopkins people do not know what nf is about. i have it by i mean nf also i stole my left eye now an ugly prosthetic and a forehead lump from a plexi but your daughter has it bad. prayers to you

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