Wednesday, February 26, 2014

The Advocacy Connection

Sometimes, it's all about the timing.

Most evenings, Allison's homework leaves me feeling drained (and quite honestly ready for a glass of wine!) but the other night after we finished studying for her history test on the legislative branches my face lit up with excitement.

"Allison", I said, "Do you know that every single word that is said on the floor of the House and Senate is recorded and printed into a book every single day?"

She looked unimpressed but slightly interested.

"Did you know that your name is in one of those books?"

Now I had her attention and our incredible discussion over the work I do, along with many other Fragile X Advocates, each year came to life. For the first time ever, she was really interested in the advocacy portion of the work that I do.

I have been debating taking Allison with me to DC for a couple of years now to advocate for herself and her brother along side of me but I just wasn't sure she was ready.  To see her excitement about what she was learning and how it directly weaves into our lives lets me know now she is.  I hope next year she can come with me but for now I gave her something incredibly special to me to take to school to share.



Yes... a copy of the Congressional Record from Wednesday, July 21st, 2010.


You see there is something very special about this Congressional Record, it starts with this piece by the wonderful Representative Gregg Harper from Mississippi ... "It is my hope that, one day, we will see a time when all families suffering from the effects of fragile X will be helped so that they, too, will have the chance to move on and to enjoy the next phases of their lives..."


and continues onto the next page with this... (Do see how the 3rd paragraph from former Representative, my incredible friend, Phil Hare from Illinois ends?)  "... and we continue to make finding a cure for fragile x syndrome a national priority." That gives me chills each time and makes me smile.

But it's something about the middle that really stood out to Allison...look a little closer...


Do you see it?  In the 3rd paragraph? There is it, in print, in a Congressional Record... her name! But not just her name, it's her name in the statement as a reason why Congressman Hare was inspired to do something and get involved.  

This caught her attention and she beamed with pride. I talked with her about what it's like to be on the House floor, the Congressional Briefings I have spoke at and the incredible people I have met in DC.  I used a couple of sticky notes to mark the start by Congressman Harper and also to point out where Allison's name was mentioned and then handed it to Allison to take to school to show her teachers.
She was beaming with pride as I dropped her off from school and again when I picked her up and she told me how cool her teachers thought this was.  She asked if she could bring it back as not everyone was able to see it.  I just smiled and told her "of course!" and let her know this copy was hers to share.  To see her excitement really melted my heart.

To re-read the words by former Congressman Hare though may be words other advocates need to read too.  Timing, my friends, timing.  One week from today over 150 Fragile X Advocates will be on Capitol Hill for the National Fragile X Foundation's annual Advocacy Day.  And while I have said repeatedly how empowering and important this is, re-reading the word's Phil Hare spoke on the House floor may be exactly what other advocates need to hear as we prepare to go back to DC.

Look again at this section...

"Madam Speaker, I first learned of the fragile x syndrome as I was leaving the floor and was walking back to my congressional office. I looked at my schedule, and I saw I had a group of constituents who wanted to talk to me about fragile X. I had no idea what fragile x was. On the way to my office, I kept trying to think what could this be?
I had the opportunity to meet Holly Roos and other parents. Holly told me about her son and her daughter's battle with fragile X. The family shared stories and photos and it motivated me to get involved.  I started by participating in my first fragile X walk in Canton, Illinois 3 years ago. Three walks later, I am as committed today as I was then to work to find a cure.
Because of Holly, Parker, Allison and all of the people affected by fragile X. I was inspired.... "

Those are the words of a Congressman who's life was changed from a single visit to his office.  It took one meeting, one opportunity to tell our story to make a difference and inspire him to get involved and become a champion for our cause.

I understand how intimidating it is to go to DC. I understand the sacrifice of leaving your family, job and life to make this trip and the financial commitment involved to get there. I've been doing it for many, many years.  I do understand.  I also understand that only you can tell your story with heart and compassion.  Only you can make that difference. Only you can inspire someone with your story. I will continue to tell mine, I hope you will join me in telling yours and inspiring the current members of Congress.

The future of our children depends on our actions of today.  I know it's scary and intimidating the first time you go.  I also know how empowering it is to know you are making a difference.  And we are making a difference.

The proof  is forever a part of history in the Congressional Records. We have come a long way and while there is still a long way to go, we will get there.  Together, telling our stories, sharing our pictures we will continue to inspire..."and we continue to make finding a cure for fragile x syndrome a national priority".

I love that my daughter is learning about our legislative branches.  I love even more that I can give her our very own piece of history to make the learning process more meaningful. I love knowing that in the future, I can bring her with me to DC and we can stand side by side to tell our story.

I also love knowing our advocacy journey is going to continue to move forward and be forever documented as part of history while we improve the future.




It's all about the timing... one more week I'll be standing on these steps again - and I won't be alone.  I'll be surrounded by amazing fragile x advocates from all over the United States as we come together to advocate for everyone affected by a Fragile X Disorder.  Safe travels my friends... I'll see you next week!

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