She's Hideous!

As I dropped kids off at school today, I couldn't help but overhear this mother commenting about her daughters birthmark.  "It's soo ugly...it's hideous!" the mother said, as she pointed at the quarter-sized brown, slightly raised mark on her little girls cheek. "Just look at it...I'm sooo glad we are getting it removed!"

I just stood there.  Biting my lip.  Maybe I should have said something.  I doubt it would do any good though.

My mind just went to my family and the countless birthmarks we face.  The tumors.  I have never once considered them "ugly" or "Hideous"...And would NEVER point them out, and shame my child, like this woman did.

To me, despite the tumors, the birthmarks, I am a work of God.  I am not a mistake...nor are my children.

I was thinking, as I was listening to this woman go on and on about how her daughter would "Never be taken seriously", with this mark on her face... How she would handle a diagnosis of Neurofibromatosis.

When I came home and told my hubby about this, his reply was awesomely true.  "You handle, what you are given".  To that mother, her child's birthmark was ugly. (Even though I disagree totally with how she handle it...it was HER truth)

I live in MY truth, that MY children are beautiful.  Birth Marks, Tumors, Deafness, Scoliosis...whatever NF brings.  My job isn't to change people, and how they look at themselves....My job is to set an example, with MY TRUTH and hope that it helps people use what they already have, to change themselves.

Thrive On!

Say What!?

Have you ever said something, that you wish you could take back?  Put words out there that were insensitive, or just downright mean?

I have this neighbor, who approaches me, every few months, to try to sell me on her "special oils", that she tells me have cured, even the most aggressive of cancers.  "If you would just buy a few of my oils, I know your daughter's brain tumor would go away." she tells me.

Really?  Gee...If your oils cured cancer, then why the heck aren't you a bazillionaire, living in some mansion?  If your oils cured cancer...why isn't there a line around the block, ready to purchase your product?

The thing that people don't realize, is that Bailey doesn't have cancer.  She has a brain tumor, caused by Neurofibromatosis.  No oils, or special food, is going to take it away.  The only way to "cure" Bailey's NF, would be to have caught it before it reached her chromosomes....meaning, at conception.

But in saying that, it doesn't take away the fact that Bailey's brain tumor is very serious.  It's in a spot, where even taking a biopsy is considered too risky.  A spot that if it grows much more it could have a significant affect on her cognitive skills and personality.

My neighbor told me a few weeks ago, that I must not truly want Bailey "cured", because I have chosen to not purchase her oils.  *Hold me back*  I couldn't believe it!  I tried to explain to this woman, that her oils could not cure Neurofibromatosis...and she kept insisting they would.

I asked her, if she had any oils to cure down syndrome....or muscular dystrophy.  Her answer..."No, of course not."  She seems to think that NF is some kind of infection, and all I need to do, is rub some cream or oils on my skin and I will be "fixed"...Then maybe, just maybe, I'll live up to her idea of perfection.

I know that most people just want to help...They want to provide some "fix" for Neurofibromatosis....But what I would love, would be for people to stop trying to fix us.  We aren't broken...We aren't diseased ridden...We are wonderfully made, in the eyes of God.

Facing Mountains

I know how hard it is, to face giants.  To push against something, that is ready to crush you.  To, with all your might, go up against something that, seems, unwinnable. (is that even a word?)

I get questions all the time, asking me HOW, to stand up to doctors, who seem so unwilling to listen.  Doctors, who at times, seem to not understand the pain and frustrations that come with having Neurofibromatosis.

If you have come to this blog and are dealing with Neurofibromatosis, you have found someone who understands.  I am not a doctor, or medical professional...But, I am living with this disorder, and experience many of the same frustrations you do.

I didn't get to "Thriving with Neurofibromatosis" overnight.  In fact, there are days that I don't "THRIVE" at all!  But that bar is set....And it's something I try to reach for everyday.  Every time I face my mountain, THRIVING is my goal.

Every time I face a doctor who tells me that nothing can be done, or that I have to simply endure my pain.  Every time I face doctors who make choices for my children that I don't agree with...Or treatments, that seem to be doing more harm than good....THRIVING is my goal!

So how do I do it?  How do I stand up to the world of doctors who are obviously more educated than me?  Who seem to "know-it-all"...Doctors who wear the respected white coats, and have YEARS of experience.

First, you ARE your own health care professional!  It's important to remember this when facing ANY health care crisis.  YOU know your body and YOU know your children, better than ANY doctor.

It all starts with respect.  If you do not respect your doctor...FIND A NEW ONE!  I can respect someone, and still disagree with how or what they think...And respect goes both ways...If you feel you aren't being heard and treated well by your doctor, it's time to move on.

Another thing...Getting angry gets you nowhere...and can oftentimes leave you more frustrated than when you began.  I've been there and I know that people who don't listen, and who act dismissive of your pain, can leave you feeling very helpless, but anger only escalates this frustration and can increase your symptoms.

Two weeks ago, I faced a mountain.  A very respected Neuro-Oncologist, who was on-call while my 15 year old daughter was facing her own mountain, came into the hospital room with the results from the blood test.  My daughter's blood count had dropped 24 points overnight, and this doctor wanted to write up discharge papers and send us home.

My mountain was right in front of me, and I had no choice, but to start climbing it.  "I don't agree with going home...while her counts are still low." Is all I had to say to him.  I got the "Ya Buts...."  But the choice this doctor had made for us wasn't right.

I knew Bailey was better off staying one more night.  Confidence and respect can go a LONG way, and can help make your mountain climb easier.  It's scary, and intimidating, but if YOU don't make this climb...Who will?

I can't go in with you to the doctors office....But this message can!

Thrive On

Negative People!

Negative people are like human black holes.  They sometimes come out of nowhere, then suck the life from everything around them.

They think, "If you are happy and positive, then you must be crazy...or better yet, you're lying."

Living with Neurofibromatosis isn't easy.  I can be the first to tell you that I have often thought that the battle wasn't worth the effort to continue to fight.

I have been criticized and made fun, my entire life, for the choices I have made....How I look, what I wear, how I talk...And now that I am adult, people criticize my choice to have children.

To those people, who continue to spread their own unhappiness with life to people around them...How dare you!  Never once have I judged couples who have a genetic "abnormality" for choosing to start a family. Never once would I allow MY own disdain for life to affect someone I barely know...or heck, even those that are closest to me.

Keep your negativity to yourself....I'm too busy to hear how YOU disapprove of MY choices, that have NOTHING to do with you.  I am too busy living my life, raising my sweet babies, giving them the best life I can.  

I honestly don't need to hear that you feel I should have sterilized myself, as to not keep the dreaded "NF Disease" from continuing on.

I get it....I know sometimes life sucks.....Sometimes things  happen to people that completely destroys their faith....But THAT'S YOU, that's YOUR life....Don't try to destroy MY faith, just because you are so unhappy with yours.