Friday, November 6, 2015

Giorgio Foundation PART 2- The Speech

I love the advice people get when speaking in front of a large crowd.  Being married to a professional speaker, I think I have heard it all!

Honestly, I think picturing the crowd in their underwear is good advice...The part where Mr. Brady says that it helps the speaker realize that the people they are speaking to, are human, just like them makes sense.

I didn't have time to picture THIS audience in their underwear....I was too focused on not falling on my face. :)

The speech was about my own diagnosis....How I choose to THRIVE, through all of the uncertainties...All of the fear....All of the anger....How I go beyond just 'living' with NF.

For me, I felt empowered on stage.  Looking out into the crowd of several hundreds of people, did not scare me (I was shocked by this)  Instead it made me feel like I was doing EXACTLY what God put me here to do.

All I wanted was to tell MY story.  Impact ONE person.  And leave an impression on people that NF is just PART of who I am.

It was such an honor to be a part of this wonderful event...I was made to feel like an honored guest and for that I wanted to thank EVERYONE involved.  Especially the Borzellino family!

Me And Giorgio at the 2nd Annual Giorgio Foundation Fundraiser

Wednesday, October 28, 2015

Giorgio Foundation Part 1

When I am asked to speak about Neurofibromatosis....There really is no hesitation to saying YES.  It's my thing.  I feel great doing it...Even when the nerves are overwhelming.

This last speaking engagement was awesome.  I met Erin through e-mail, after she reached out to me to tell me she had read my book.

Erin and her family are dealing with a diagnosis of NF in Giorgio, who is almost 10.

I was asked to come out to speak at their event and I could not have been more thrilled!

It's ALWAYS an honor when someone reaches out to me, based on my story, and how I choose to live my life, even while facing the uncertainty that comes with living with Neurofibromatosis.

So now that I had been asked to speak....I needed to get moving on my message!!

My message always revolves around THRIVING with Neurofibromatosis....But I Tweak it, based on who I am talking to....

This is when being married to a speaking coach pays off BIG TIME!!

Rich helped me fine tune my message and even got me to attend a Toastmaster meeting to practice my speech in front of a live audience!

I have to say....The more I do this speaking thing....The easier it gets, and the more confident I become!!

Erin and her family invited me to their home in New York, which was so warm and inviting...I felt right at home!

The next morning, we all took a private plane to Pennsylvania

I had so much fun playing games with the kids during the flight  :)  And they were a good distraction for me, since I was scared of the whole "private plane" thing. :)

I was able to see where the event was being held....And where I'd be standing to give my talk.  It was a little intimidating.


 But I did it.  It felt GREAT!  This was by FAR the largest crowd I have ever been in front of!  Having people come up to me after, was the best part.

The whole even was a success - And raised over $200,000 for NF!  I was so happy to raise awareness for Neurofiibromatosis, in a positive and encouraging way!

Thank you Borzellino family for inviting me into your home and your hearts!  It was truly an honor to be a part of something so successful!

Please stay tuned to PART 2....Where I will talk more about my speech....And what this event was all about....I may even post a video!!

Thursday, October 22, 2015


I feel it in my gut.  The nerves.  The excitement.  The adrenaline!

This weekend, I have the privilege of flying to Pennsylvania to speak to a crowd of several hundred, to help raise awareness for Neurofibromatosis.

A wonderful organization called The Giorgio Foundation has invited me to talk about how Neurofibromatosis has impacted my life.

I am honored and so excited!

You know that feeling you get, when you know you are doing EXACTLY what God put you on Earth to do....?  That's feeling I have!!

I will take video and post it here when I return....

Wednesday, September 30, 2015

Excuses. Excuses.

I am full of excuses.  This morning, my husband came upstairs after I had dropped the kids off at school, excited about challenging me to a workout based on the cross-fit workout he'd already done at 6 a.m.

But....."I JUST worked out YESTERDAY..."

And....."I have to go to the store....."

And...."I have to put together my moms Birthday gift..."




I'm tired.  I really am.

I have tried to start a blog post for 2 weeks...And I just couldn't come up with anything 'good'....So, I thought I'd just write about what I am REALLY struggling with.

My mind is constantly racing.  Thinking about the zillions things going on.  Most of which I can do nothing about.

Then I have my job.  Where life literally is put on pause.

The movie theater.  I love it and hate it.  When I am working 7/8 ish hours a day--the outside world doesn't really exist.  It's THERE waiting for me....But it's like I get sucked into an alternate reality.  A reality filled with lazy kids who haven't learned how to work yet, over-spenders, complainers....

Do you ever pay attention to how much YOU complain?   How many negative comments do YOU make in a day?  Seriously....You should keep track.  

My own list is a long one, so I am NOT throwing stones here.

So, when I step out of the theater...BACK into reality....It's like I get SLAMMED -- HEAD-ON with ALL-THOSE-THINGS-THAT-WERE-WAITING-FOR-ME!

No break.  No time to shift.  No time to breathe.

Brain tumors....Back pain...Headaches----The worry about what the next MRI is going to tell us about Rachel. or Bailey. or Braden. or even ME.

Chores...Dinner...Laundry...The ENDLESS cleaning....and even though I have six kids all perfectly capable of pitching in, they can't do it the way I would do it, so even if I was a good delegator, which I'm not, I'd still want to do it all myself.
Wondering, despite my husband's assurances that all will be fine (and it always is) when the 'JUST-SQUEAKING-BY' lifestyle will change.

There are some days.....I fell like I can juggle everything, perfectly.  All the balls are in the air, almost floating on their own. Days...when I believe, that everything is going to be okay.

Then, there are those days, when I wonder how I am going to make it through.  

I am human.  There are days I shake my fist at God. I hear he's OK with that. I cry -- overcome with guilt...wondering in a fit of despair why I 'DID THIS TO MY KIDS'. I trip over the hurdles of life, just like everyone else does. I forget how good life is.

But....THRIVING allows for weakness, for struggle, for anger. As my husband tells me Muhammed Ali would say 'it's not how many times you fall down, it's how many times you get up' - or something like that.  I get back up.  Staying "down" isn't an option - for me, for my kids. Because life IS good, when I focus on the good in the life. The hugs from my kids. Their drawings. Watching my son play basketball. Taking advantage of working at the theatre, even, and taking the family to a movie, or sitting down with them to watch Once Upon a Time or Master Chef.  

I SMILE AT THE COMPLAINERS...Set an example for the lazy kid workers....And as for the over-spenders...? Well...that's THEIR problem, not mine.

Life isn't always perfect. Well, it's never perfect. But I can always THRIVE - whether I'm Thriving in weakness or strength.

Thursday, September 24, 2015

Speaking of Neurofibromatosis!

So, after a WHOLE LOT of convincing attempts from my hubby, I finally downloaded Periscope. An app that I knew very little about, but thought I would play around with it, to see what all the fuss was about.

After watching a few live streams...I wasn't so sure this was for me.  I mean, I am ALL for walking your pet turtle with a leash...And watching live feeds of people brushing their teeth...But it all seemed a little silly to me.

That is, until my hubby helped to record my OWN live stream.

You can check me out on Periscope by searching for NFMOMMY.

Let me know what you think...And comment with some ideas!  

I would love to Periscope once a week (or so) and talk with others around the world that are living with NF...Or those who are just curious about what it is like for someone living with NF.

Talk to me.  I'm listening!