“Next Year…”

We left the house today with only the normal jitters.  We even had time for a few family photos.

rare meg

Rare Meg and Felix

rare mom and meg

I have been teaching for 16 years.

I have addressed hundreds of students, if not thousands through the years.

I pride myself on being able to get their attention with minimal effort, and keeping it in most cases.

Sometimes it can be a bit more trying – like a full auditorium, as opposed to a closed classroom, but with the right presence and message, it can be done.

I did not get to hear Meghan’s speech today first hand.  I was thrilled to see her happy smile when I picked her up.  I knew she felt it had gone well, and that was most of the battle won.

While she was doing her homework I watched the recording her para had kindly made for me.  I was awestruck.

Not only was I impressed with my little girl, and the clam, confident way she spoke, I was AMAZED by the quiet in the auditorium.

Now I know they are taught good manners, but this went beyond that.  She HAD them.  They cared about what she was saying.  They were interested to learn about Cowden’s Syndrome.  They were hanging on her words. The applause at the end confirmed it.   She nailed it.  Public speaking is not an issue for my girl.

The day followed with a Skype call to her friend Connor in Colorado.  They struggled with the video feed, but they had audio and will try again next week for the video.

I know its only the US, but “Rare Disorders without Borders” here we come!

Rare disease logo 2013

HUGE smile.  Giant fatigue.  Her day was a success.  And now, tomorrow, she will give her speech all over again to the 4th and 5th graders – her peers.  May it run just as smoothly!

Meanwhile, back at my school – the ribbons were distributed.  The jeans were on.  The kids were charged.

Many of them even decorated their doors with the Global Genes Project – denim ribbons.  This was a huge school spirit event.  I received cards, letters, and even a pack of thank you notes from one class.  It was beyond touching to see my colleagues, supervisor, and students, all in their jeans with their denim ribbons.

rare door 3

rare door 2

Rare door

“Hope it’s in our Genes”

We clearly are not alone.

My Mom and I
My Mom and I

All day long the photos came in.  My Facebook page was hopping.

My nephew’s PreK staff on Long Island, my friend’s Catholic School on Staten Island, a few ribbons to a local HS, junior class at another school wearing theirs to support a family member.  My sister had hers at work, and so did some dear friends.

“Next year…”

Next year can we do a fund raiser too?

Next year can we involve more schools? Maybe all of Staten Island?

Next year…

I got tons of requests, and offers of help.  We know LOTS of really great people.

Next year, maybe we will help raise awareness even more.

Rare_Disease_Day_Logo_Hope_

But this year, tonight.  I am tired.

I am grateful.

We are smiling.  We are blessed.

Right now, Tylenol for her pain.  TLC for her nerves.

There will be time to plan for next year…

4 thoughts on ““Next Year…”

  1. meghan sounds a lot like her mom,you and felix are doing a great job with her…you should be proud of yourselves…i’m so happy for her that it went so well…if i can be of any help to you in the coming year with fundraising,awareness or some of the “captain”, just let me know i’d be happy to help..my husband wore the ribbon to work today and made more people aware of your cause….he couldn’t wear jeans since he’s a custom’s inspector..;o(..many, as im sure you know, had no idea,neither did the teacher’s at my son’s h.s. during parent teacher conferences that i attended…but they do now..hope you guys had sweet dreams last night..xo

  2. My heart is SOARING! I am so stoked! I am so impressed! I am so encouraged! I am so bummed Rare Disease Day came and went for me in a blink of an eye and I about missed it. I didn’t have a shirt (I know you ordered yours), I didn’t have anything or do anything to help to raise awareness – except send a few tweets (that I was hoping would generate something.)

    WAY TO GO MEGHAN! And way to go to you too for what you’re doing. I loved seeing the classroom pics. 🙂

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