Sunday, March 4, 2018

Sharing the Love for DC... and Fragile X Advocacy!

It’s early March and for the first time in many, many years I am sitting alone in the airport on my way to DC. In the years that I have been doing this (please don’t ask me how many, math isn’t my thing, not to mention it ages me), I’ve been fortunate to bring people I love dearly along for the experience.

The first few years I came alone, which was scary as heck that first year, which was probably the very best thing for me. It allowed me to hang out with other parents, clinicians and family members from the Fragile X Community who knew DC pretty darn well and through our late night walks through the city, I fell in love with the place I was once terrified of.

I had been to DC once before with my family the summer between 6th and 7th grade, I think. Our family vacation had taken us from Illinois to Alabama to Florida to Virginia to DC (driving. I can’t even fathom that today!). DC was chaos and scary. The hotel had bullet proof glass at the check-in and easily 5 locks on our door. We were all a bit panicked. We spent hours at the Vietnam Memorial, which was newly opened to the public and the real reason we were there. It was amazing. Breathtaking. Emotional. Gut-wrenching. Heartbreaking. It was all of the feels possible wrapped up into one and left memories of how therapeutic and heartbreaking it was for my dad. It was old friends, with their names on the wall. It was new friends made from the thousands of people that were there, arriving strangers, sharing stories and tears while helping find names on the wall to etch. I don’t remember anything else but I’ve been told we saw other memorials too. I remember my mom wanting to go to the Smithsonian. We took a family vote and decided that we were all too scared to stay in this place any longer. I think my mom’s heart broke a little when we left instead of staying the extra day. Also, something that remained engrained in my mind.

So, safe to say it took some convincing to get me to go back but I did, for Advocacy Work for Fragile X. It’s amazing the things I’ve done in the name of Fragile X with the hopes and dreams of making a difference because, trust me, none of it came naturally to me.

This solo trip flying to DC and meeting up with other Fragile X families I had met through the listserv (It was our social media back in the day) and at conferences – so, while the flights were alone, my time there was surrounded with incredible people who remain my friends today. We walked for hours, truly in the middle of the night as it was the only free time we had, through the city. I saw and fell in love with every monument, truly understanding their beauty and our history way more than before. I also felt safe. Incredibly safe. Between the friends, feeling safe, the sights and the intoxicating work we did on Capitol Hill, I was hooked. I was in love with Washington, DC, it’s history and the work we were doing.

Over the years, I have been fortunate enough to bring my mom with me, multiple times… at least 3, maybe 4? 5? I don’t remember the number as much as I remember how excited I was to walk with her all over the city and see as many of the Smithsonian Museums that we could get through. It was almost a sense of relief, to be able to bring her back and experience DC the way I saw it now and for her to be able to take in all of the sights in addition to doing the advocacy work for Fragile X that I loved so much. She's a natural advocate and her extensive medical knowledge is always helpful in meetings.

Between the times of taking my mom, I finally talked my dad into going with me. I promised him he didn’t have to do the advocacy part, I just wanted to take him around the city. I wanted to take him back to the Vietnam Memorial and show him the beauty that is DC. We had an incredible (and sometimes tearful at the Wall) experience that I cherish. And he totally rocked the advocacy part, too!

The last 2 years though… those have a special place in my heart because Allison came with me. I couldn’t wait to show her the city. She shares my love of history and was as excited as I was. We came for 5 days (both times) and my mom came with to take Allison out in the city while I was working. Last year, we brought her friend, Paige, along too. Sharing the city I loved with Allison and watching my small town baby girl fall in love with the big city experience was incredible. If nothing else would have happened during those 2 visits, I would have been happy. But so much more happened.

While Allison had seen me give a few small talks on Fragile X, she had never seen me at work, or addressing a large crowd, or bonding with other families. She met the people I work with, the families I talk about and was excited to spend the day on Capitol Hill. But, that was just a tiny bit of the so much more that happened.

What happened for Allison in DC was the same thing that happened for me so many years before. She found her voice. She led and did the majority of the talking through many of our meetings. She would explain what Fragile X is, how it impacts her brother, cousin and our families. She rocked the advocacy thing and I could not have been more proud.

During our tour of the Capitol building with Congressman Gregg Harper (who also has a son with Fragile X), she asked him to take a selfie with her. That was a first but not the last. The repeated the selfie on her return trip.

She sat in the chairs of the house floor while learning all about the history, how members cast votes and where Moses can be found. She watched Senate proceedings from the balcony, saw the Supreme Court with a guided tour and took in every monument there is. She has walked through many of the Smithsonian museums, toured the Ford Theater, watched the changing of the guard at Arlington and everything else we could squeeze into our time.

Our time on Capitol Hill gave me a glimpse into the amazing young woman she has become. She’s always stood up for others and is her brother’s best voice. To see her take in everything she has heard over the years and pull it together into gracefully explaining Fragile X to our Members of Congress and their staffers, left me in awe. Saying I was (am) proud of her feels so understated. It was of those times, where I stood back and thought, “You know, maybe I’m not completely screwing up raising her. Maybe her brother has brought as much into her life as his disability has taken away. Maybe, she will be the voice that changes our world.” It’s left me crushed not to have her by my side again this year. 

Missing days in High School is just not something that can be done. It breaks my heart a bit but I appreciate her dedication to her academics.

This year, I fly alone. No mom. No dad. No Allison. Just me. And maybe it’s what I need, again. At least that is what I keep telling myself as I await my final flight into DC feeling like a piece of me is missing.

While I look forward to returning to the city I love, seeing my fragile x family and advocating, a part of me will be wishing she was here and hoping she knows through the 8 million times I’ve told her how proud I am of her. I know it’ll be a great and productive visit but, I’m also 100% sure that I won’t meet anyone who shares her love and excitement for riding the Metro, Caleb excluded.

I miss you, Lou (Allison). I hope I am able to carry your voice through to our meetings until you can return with me again. I am so incredibly proud of you!!!

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