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.

Neurofibromatosis Diagnoses

Motivational Monday

I have met a lot of parents lately, who have recently received the diagnoses of Neurofibromatosis for their child.

It's amazing, when you reach out to someone who has a need, how the word gets around, and you have a full group of people, who are desperate to understand their new diagnoses.

I know how confused I felt when my own children were diagnosed. I wanted to know WHY, even though, for me, my "why" was really already known. I was desperate and frantic for answers...only to come up short, and left feeling more alone than ever.

It's one thing to have the disorder myself...I could be strong and courageous, but now this is passed to my children, how will THEY cope?

The first step in "coping" with any kind of diagnoses, is to first understand it. By understanding the illness, you bring the control back to you. The control, can be used as power, as you educated yourself and those around you.

Living with any chronic illness takes courage. But when you learn to face your fears, you will one day move past them, so you can live a happy and full filling life.

Neurofibromatosis, is not the end. I have found that life is what you make of it, and is full of choices. If you choose the "doom and gloom" path, that's YOUR choice, and you will have to deal with what comes from that.....But for me, I choose to show my children what true strength is, and help them THRIVE with NF. By being taught and shown this.....that's how THEY will cope.

Children learn from everything we as parents do and say. And showing them, that I will NOT, just turn over and let this disease consume me, teaches them the courage, they will need to get through anything.