Friday, December 23, 2011

Do you wish?

One of the most common things I'm asked is "Do ever wish your children didn't have Fragile X?"

Sigh.  It's one of the questions that always bothers me but I've learned to answer very honestly yet politely. 

It bothers me because when I hear it asked what my mind translates it to is "Do you wish your children had never been born?"  Because, this isn't one of those things where there is a before and after of.  I don't know who my kids would be without fragile x.  This wasn't a freak accident that forever changed them, like a car crash or fall.  This is how they were born, this is the only them I know.  And, despite their challenges, I love every single bit of them more than I have ever loved anything in my life.  So, as twisted of a version of that question is that goes through my mind, it is still what goes through my mind making that a bothersome question for me.

The answer that has become my staple is simple, "Of course I wish they didn't have the challenges of Fragile X, I wish we were one of those families who had never heard of it and my children didn't have so many struggles. However, they do have Fragile X and I can't change that. So many good and incredible things have happened in our lives because of Fragile X - and for that, I am thankful."

The diagnosis that came almost 9 years ago, honestly, redefined who I am more than any other event in my life... including becoming a mom.  I always knew I would be a mom, one way or another, it was the only thing I ever wanted from life. Becoming a mom was the most incredible thing to ever happen to me and I completely understood why I had always wanted that so much.  What I didn't plan or think about was becoming a special needs mom, especially of a disability I had never heard of. When that happened (well, the actual diagnosis - clearly I was a special needs mom from day 1 I just didn't know it for a few years!)  it re-defined me.

The Fragile X diagnosis gave me purpose. No one had ever heard of this syndrome. No one knew how to work with my children. No one could answer my questions. No one could do anything except look blankly at me and say how sorry they were.  I didn't want people to be sorry, I wanted help, answers, understanding. I wanted, I *needed*, to know more.
And know more I soon did.  I was facinated with what I was learning, the people I was meeting and overwhelmed with the frustration of how little (if anything) most people knew.  This was my purpose.  To help others understand, to educate, to reach out, to make connections - to push my quiet, shy self to new limits and learn that *I*, quiet, shy, opinionless me - had a fire inside me that was about to give light to our Fragile X world.

I've been extremely fortunate to have had many opportunities over the past 8 years, although some will say it was by "luck" or "being in the right place at the right time", I know it was from persistence, passion, self education and drive that has led me to where I am today. I was "lucky" to "be in the right place at the right time" because I worked hard to get to that place and to make connections to make change happen.  But, people will chose to see that how they want.  It can be an excuse to not get out and do something - because I was just "lucky" - or you can see it for what it is and go do something.  That choice is up to you, not me. But if I get a say in your choice - go do something. You are just as strong, just as passionate, just as capable as this small town girl.

I have traveled many places, given many - hopefully empowering - lectures, met with and become friends with the top Fragile X professionals in the world, worked closely with members of Congress, (discovered a love for politics, sort of, as much as one can love politics these days anyway!), spoke at 2 Congressional Briefings, re-defined fundraising, been that 1st contact for many newly diagnosed families, brought families across the country together, and received an award or two during the past 8 years.  But the most incredible thing that has happened to me and the reason that *yes* I *am* very happy to have Fragile X in my life is the friends I have made.

For the first time in my life, I understood me - I understood my anxiety, my tears, all of the little "quirks" that make me Holly.  Well, all of the ones I can "blame" on fx, some are just unexplainable but... you'll have that! 

I've always been surrounded by incredible friends but I've always kept my distance to a degree. Now, I'm a little better at letting people in. I have really incredible friends who I can't imagine ever being without.  Some are local and some, although I feel them with me every day, are - well, not even in the same state.

One of the most wonderful "gifts" I can offer to people I meet (in the fx world) is to introduce them to other families - and hopefully, like me, they will make a connection that will last a lifetime.  It's why, on Facebook, I started a "get to know you" post a couple of years ago - because having that connection - that knowing that you are not alone is something I wish for everyone to experience.

This - the "friends" part - was actually the real point behind me finally starting to blog. Not to discount my non-fx friends - like Kim and Lori and Heather and Lib - but I know our paths would've crossed regardless - and my sisters and cousin, Kelly - who I could never live without ...  I do love and appreciate you all so very much.  This part is the FX connection, the reason I *am* happy to have FX in my life. I worry that naming one friend will make my other friends sad (hello FX guilt!)- when they are all my birches and I love them all very much.  Paula, Kim and MB have been a part of my life almost as long as I've known about FX, Talitha came along (almost stalkingly) next and a couple years later convinced Karen we had to meet as well.  And then, then there is M.  M is our Melissa, although I secretly believe "M" means she's "mine". 

Somehow I tend to miss, through the crazy busy insanity that is my life, things M posts.  And when I come across them, I usually cry.  Like this: Melissa's Elf blog  (Go read it, I will wait... seriously - Go Read It!  Geez!)

She can text, IM, post on FB, or write in a blog and my mood can change entirely. In the year and half since we've met IRL  (lol, who knew I'd ever say that! bahaha!)... In real life for those who needed the translation... I've become a better person for knowing her.  She encourages, pushes, and inspires me without even realizing it.  (or she does and fakes it well - but most of all - she "gets" me.  

Just like all of my birches - and all of the birches we've added on like Tina, Rachelle, Amy and Nicole... I'd be lost without having each of them in my life.

So, do I wish my children didn't have Fragile X?  No, I don't wish upon things I can't change or have control over.  What I do wish is for my children to share the incredible people, experiences and friends that came with our diagnosis and that each of these areas of our life continue to grow, strengthen and be a part of our lives ~ forever.


  1. You are such an amazing woman and mom! I am blessed to call you friend. Love you!

  2. Yay!!!! <3 this and you and am so happy you are blogging!!! You are a warrior momma, and a strong voice in our FX world- one we need and rely on and are thankful for!!!

    Here's my blog... not specifically FX, but as that's such a part of our life it surely comes out in all posts :-) noses for you!

  3. whoops... how about this...