Porter Colley-Neurofibromatosis

I love it, when I find people THRIVING!  Porter's attitude is beautiful!

Porter Colley ~ Ripley's Believe It or Not! by THEKNOTTYMAN

Contentment

"I have learned to be content

in whatever circumstances I am." Philippians 4:11

(Paul wrote this from a prison cell!)

. 

For me, contentment means a feeling of peace and comfort.  How on Earth would it be possible for one to feel contentment in a prison cell?  How could someone feel peace and joy, in a seemingly hopeless situation?

I personally struggle with the feeling of contentment.  I doubt is because of the lack of faith or trust...but it's definitely because of the lack of something.

The craziness of raising a large family, can make it hard to find to find contentment, but it CAN be done.  I have seen it...felt it...I just need to figure out how to access it more often.

The one thing I have found, is that the busier I am...the more content I feel.  It's those moments of quiet alone time, that seem to trigger frustration and depression.  If I keep myself busy...Even if it's with hospitals, volunteer time, yard work, or computer stuff, I find myself less likely to fall into the trap of discontentment.

The bills, chemo treatments, car repairs, lack of money etc...Are all real issues, that can't be ignored, but they are also things that I really have little or no control over.  What I do have control over, is how much I let  the outside "stuff" get to me.

My faith in the Lord is strong.  Stronger than it has ever been....and it is THIS, that I need to focus on....and it is THIS, that will bring contentment.

Pregnancy and Neurofibromatosis

*If there is a history of a genetic disorder in you or your extended family, it's best to ask for genetic counselling before becoming pregnant. The number of tests available for genetic disorders is increasing every year, although they don't tell the potential severity of the condition.


I was 7 years old when I KNEW I wanted to become a mother.  Carol Brady was my idol, and I wanted to be just like her.

Neurofibromatosis never entered my mind, when it came to wanting children.  In fact, as far as I knew, I had nothing to worry about with regards to NF.  I was examined as a child, after my older brother Mike was diagnosed with NF, and my parents were told I didn't have it...so why would I worry?

I was confused when I began to have some NF symptoms, but was continually dismissed by doctors, whenever I would bring them up.  I was simply "birthmarky and freckly", and didn't need to worry.

My first baby was born in 1996 and I couldn't have been more happy. The few "bumps" I had seemed to grow a little ... and a few more seemed to pop up.  But they didn't hurt or cause me any issues, so I didn't worry...And when my 2nd child was born in 1997, I knew that being a mother was exactly what I was meant to be.

None of my obstetricians mentioned the bumps (that were very obvious)....Until my 6th pregnancy.

As I wrote in my book, Thriving with Neurofibromatosis , this was my wake up call...when I finally "got  NF"...The moment I realized I had been overlooked and seemingly ignored by the medical community, and personally ashamed and hiding in fear from my own concerns and doubts for FAR too long.

That 6th pregnancy - when an obstetrician indirectly, but effectively, shamed me for bringing children into the world. I knew then and there I had a battle on my hands.  I knew that I would have some explaining to do, to those in my life, around my life, and even to myself to a degree, to create an understanding as to why on earth I would risk damning my children with such a dreaded "disease".

It wasn't long after Brooklyn's birth that I began to understand and accept ALL that Neurofibromatosis meant for me, and for my family (which was A LOT).  My own NF symptoms had gotten worse, and I was scurrying around Eastern Washington, trying to find a doctor who had actually even  heard of this disorder.

3 of my 6 children would also get the NF diagnosis...And with that brought tremendous guilt.  And this guilt was almost paralyzing...Almost.

I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor--(which, from what the drs told me, have been there my entire life) while at the same time, vision issues and tumors began appearing in my children. It was all consuming, and could have easily overwhelmed me.  But my choice to have children brought with it the responsibility to accept these outcomes.

This blog, was born 3 yrs ago...After my decision to be proud of the choices I had made.  Everything you do in life is a choice...and you can also choose to be proud (or not) of those choices.

NF could have happened to any of my children, even if I didn't have it.  Or Downs Syndrome, or Muscular Dystrophy or a hundred other disorders lurking within the genetic code of the human race.

As each of my children have grown, I have also grown.  I am confident that my choice to have children was the right one.  I would not wish Neurofibromatosis on anyone...But my children have given so much good to this world, and I can't imagine my life without them.

This isn't a post trying to justify my decision to have children, it's simply my story about my choice to do so.  I respect those who choose not to have children. If I had known more when I was 19, maybe I would have made different choices. Maybe there is a reason I didn't know more, and maybe those reasons are named Bailey, Braden, Riley, Rachel, Riker, and Brooklyn.

 

Life in itself is a risk. My job now, is to provide MY children something I didn't have; A full understanding of what NF means for them....and what it COULD mean for them, if they go on to choose to have a family. Education - the E in "The E.A.S.Y. Way to Thrive" is my goal for my children, for myself, and for the world. Not so we can always make the 'right' choice, but so we can make the 'right choice for us'. 

Thrive on! 

The Flu Shot....Not For Me!

So Friday, while Bailey was at chemo....I was asked if I had gotten Bailey her flu shot.  I saw her flinch at merely the topic of more needles. (poor girl)

We were told how important the flu shot was, to protect Bailey.  "Her immune system is not like everyone else's....and it's vital everyone get one." the nurses in the room told us.

So...I agreed.  Both Bailey and I rolled up our sleeves and got the injection.  I'm not a wimp with needles, but dang it....This one hurt!

I felt fine the rest of the day....but on Saturday.....AND every single day since...I have been sick!  Body aches, head aches, tummy aches...

I get NO sympathy from my hubby, who says..."I told ya so..."  But he has taken up the slack for me, and I appreciate that!  (XOX Honey)

I vow, to never get the flu shot again.  I vow to not let doctors talk me into something, that I am not comfortable doing.

Bailey has been fine, after the shot...I'm so happy about that!  But as for me....I will NEVER get the shot again!

Pictures of Neurofibromatosis

I wanted to thank all my wonderful NF friends for contributing pictures to this slide show.  I hope this brings awareness to a condition that is WAY under talked about!

To parents of newly diagnosed children, the pictures in this video show people mildly affected (which is typical) and people with more severe issues.  No one can predict how severe or mild your case will be.  The best treatment for Neurofibromatosis is to find good doctors, who understand Neurofibromatosis and who also listen to your concerns.

Surround yourself with people who will support and accept you...

And NEVER let Neurofibromatosis be something that defines you.