Happiness.

Sobbing hysterically in my therapist's office in September of 2010, I cried "I'm never going to be happy again." It was unfathomable to think I could ever experience joy again.  She looked at me (a little too smugly if you ask) and said "Oh, yes, yes you will."  I thought 'LADY you have no friggin idea - but if so what do you know, and can I get a written guarantee?'  But she did know.  The reason I was sitting in her office in particular was because when she called me back to possibly schedule an appointment, she said "I know what Fragile X is.  My best friend's son has it and she wrote a book about it."  That was all I needed to hear, and it turned out that reading that book was what started to help change and reframe my life.
"Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them, "  Claire Dunsford wrote about her struggles both scientifically and poetically, and I related to her need to express the depth of her grief and curiosity of genes and families. I started my blog soon after, just for me, then I sent the link little by little to a few friends and family.  One year later, it became published publicly.  Am I crazy to disclose my inner suffering pain and shame to the world? Why yes, yes I am. Here's why.

Before, I couldn't understand parents like the Gengel's, who had lost their beautiful daughter in the Haiti earthquake - how could they be so active so soon after her death, helping others and building orphanages?  I would think "I would just lay in bed for years and cry."  How do you survive the loss of a child? 
Now, I get it.  Not completely as to the depth of their grief, I wouldn't compare, but to the similarity to a deep loss for your child and their future.  The part of you that will forever be broken, the part you don't 'get over' but learn to live with.  Everyone says, "As long as my kids are ok...."  and when they're not - well, freedom's just a word for nothing left to lose.  I can't change it, I  have to live with it.  So, life can't wait.  There will be no, "Once the kids are a little older...graduate high school...go to college....get married." I can't wait for my life to begin so I have to live it now - and since Owen's diagnosis, I have been the house of Y.E.S.  Yes, I'll be on the committee, become a member, go to your party.
I notice this with my other FX mom friends - many are busy exploring a diversity of interests and also make time for themselves, nights out and soon, for us local moms, our FXMoms' weekend away (real woot!).  We all make the time NOW - our kids may never sleep through the night, be able to be unsupervised, grow up, out and away - we can't wait.  The time for fun is now.   We easily, no guilt, ditch the kids and leave them at home with our husbands.  I'd like to know how many moms could truly do that.  NO. GUILT.


I have to work this whole 'happiness' thing - can't wait for the damn bluebird, have to hunt the thing down and capture it.  I have to make a conscious effort to make decisions that will make me happy, including all the small yet important daily stuff, minor joys like a new scarf, lattes, sitcoms, library books and dancing with the music up.

I have to say yes, seize opportunities, why the hell not?  SURE I'll open a business, join an advisory board, agree to public trainings? And why not sign us up for 6 monthly cross country trips for research? Start a dining club?  Yes yes yes.  Disclose the most painful part of my life to the entire world for scrutiny? Why not? 

Really, you can't take any more from me then I've already lost.  It's easy to take risks when you've lost big.  All the cliches are true - life is short, life won't wait....life is fragile.  You either let it stop you or push through it and fight, head down and with no fucking idea where you're going but always moving forward.  No guarantees, no idea, but can't wait and today better be good.  Will I ever be happy again? Trying.

I'm heading to Washington in early March for Fragile X Advocacy Day due to 'recruitment' by pushy/fantastic FX friends - and let's face it - how am I supposed to say 'no' to advocating to my son's future? That is the truly meaningful part.  So yep, I'll do it, I'll show up, I'll write, I'll risk it, I'll go.  Jump in, jump in NOW.