Sunday, July 22, 2012
It's Fragile X Awareness Day!! And Sarah's birthday! WTF!?
Sandwiched between our Cali research visit last week, the International FX Conference I'm attending this week, and Owen's birthday on the 25th, is Fragile X Awareness Day. HOLY CRAP HAS THIS TAKEN OVER MY LIFE?!?! Yes. No. Kind of?
It was a year ago this month that I finally posted in the FX Facebook Group Room for the first time - just one line - "I don't think I can do this." I remember where I was when I posted it - at work on a weekend, doing paperwork, feeling completely overwhelmed and stressed at facing a life with a child with FX and all the unknowns that came along with it. Only a month later, I was at my first Fragile X function, a cookout with all the families. Then came FX Moms' Night Out dinners. Then, in November, O became a cover model and this blog was published. A FX Mom's weekend away in February, DC in March, Cali last month...see, it HAS taken over. And it has been one of the most healing and gratifying experiences of my life.
Today is my new, yet immediately dear, sweet friend Sarah's birthday. Her young son was only diagnosed 5 months ago, and she is swimming in the dark depths of grief right now. And FUCKING IRONICALLY her birthday falls on Fragile X Awareness day. I mean REALLY. If irony was a person I'd kick his ass for her (We all know irony is a man. Chicks don't play that.) I wish I could wrap Sarah in blankets of comfort and hope, and fast forward the next year for her, and reassure her completely that life WILL and CAN get better, just as Cindi Rogers does for all of us.
Cindi has two sons in their 20's with FX (those two handsome men on the left above? Those are her gorgeous guys). And Cindi is sassy, beautiful, hilarious, happy and wears SPARKLES ON HER ASS. She tells all of 'youngsters' that 'it will be OK', and she repeatedly tells us that she LOVES her life, and we can and will too. She spends her days reassuring and encouraging all of us. We all want to grow up and be Cindi. And just as Cindi knows it will take us time to get to where she is, I know it will take Sarah her own time to get to where I am, which is only a tiny bit further down the road.
Becoming involved, advocating, going to DC, participating in Cali research - all that helps ME. Don't be fooled people, I'm no saint (as many of you know, cough cough), and often what seems like altruism has a selfish motivation. A diagnosis like FX makes you feel totally helpless. Defeated. Tragic, even. But becoming a part of the FX community - and really, we say FX family - has elevated my life in more ways I thought possible. Within just one year I have many new PHENOMENAL friends, friends with a depth of strength and courage that I didn't know possible - and many of them don't even recognize in themselves (LOLA!). They pave the way before me, and I join them in our journey. I know I will have them for life.
Asking for help, seeking support, taking some risks....the payoff has been immeasurable. One year ago I felt alone, isolated, and in the depths of self pity and 'no one understands.' I was where Sarah is right now. And today, all I have to do is text (Holly and Lola hate talking on the phone! They will if I insist though!), or message, and there is my family, just waiting to be there for me. I like to think if you go waaaaay back that we ARE all REALLY related - thanks to that one damn ape that carried the FX gene.
And even now, my friend count grows. I think of dear sweet Sarah, 'celebrating' her birthday on today of all days, and I already love her. She's gorgeous, her family's gorgeous, we both work with kids, both writers, a shared love for the same music, TV and beer (most importantly!). Our bond was immediate. She first messaged me how much she loved my blog on a day I most needed to hear encouragement and support. She was thanking ME, yet unknowingly helping me too. And that is how it is in the FX family - friends across the country, across the world (Kerry Page- I love you! And especially when you leave cool English sounding comments on my page! Blimey!). And I think that's how it works. Helping each other helps us. Being there for Sarah helps me.
I've been able to meet and consult with some of the biggest experts in the field of FX. This past Cali visit, the head researcher of our study, Sandy, used the word "amazing" many times in reference to Owen. Any idea how reassuring that is to hear as his mom? Everyone at the MIND Institute has been so warm, supporting and encouraging. They come down to meet us! To say bye! Even the professionals in FX rock!
It's Fragile X Awareness day and I could not be more thankful. Weird, huh? I am overwhelmed with love and gratitude that someone (Was it God, Liz?? Could you be right??) sent me these people. That is how it feels - that they were given to me as gifts. My new friends, my old friends, my dining club, my work friends, my AWESOME local FX Moms who are already my best friends, my family. These totally awesome people who love me and my kids, who support me, without reservation or conditions.
So today - on Fragile X Awareness Day, DO SOMETHING. Wear green to represent FX, pledge to learn more about FX, or just ask me and learn more about how it affects Owen. Pledge to NEVER say the 'r-word.' Pledge to bitch slap anyone who does. And if you are struggling with this diagnosis, and lurking in the FX rooms, just speak up. Ask for help. Message me, message any of us, I promise - we will be there.
Or just do me a favor buy Sarah a Blue Moon (keg) for her birthday. Sarah, I promise you that you won't always feel this way. You will survive the depths of grief, and this horrible hell that you are living in. I know it's no consolation now, because it didn't matter to me either a year ago, but you will emerge with strength and courage and love you didn't know was possible. You WILL be OK. I promise you, just like Cindi promises me. And we will all help in your journey, just as you have already helped in mine. Happy birthday sweet girl.