Tuesday, November 8, 2011

The Meeting of the Moms - Excuse me, is this the cool table?

Last week I came face to face with 6 other mother's who have children diagnosed with Fragile X.  These are women I have met through facebook after joining several Fragile X groups. Many of the women already know each other, and a few, like Umma, are super active both locally and nationally the Fragile X world.
So this was it.  These were the 6 other moms who through the miracle of Facebook have come together at one restaurant in Natick to dine together and share our experiences.  I keep suspecting these things are actually support groups, but I don't 'do' support groups, so I choose instead to believe it's just a bunch of women eating food and having a few drinks which is no different than my 'regular' life with lady friends....
The difference is that these women should GET me, they HAVE this this stupid fragile x, they are living with it, living through this, JUST.. LIKE. ME.  So what if they HATE me? I'd be completely screwed! I'd have to go to another New England state and hope to find other lady X friends who will tolerate me. So this was a big deal.
Working in the Brain Injury Association of MA, I saw the bond the parents had with each other, they had lived and helped each other through decades.  Maybe I want the same thing, if I have to deal with this I sure as hell want to have others to share the struggles, the changes that come with time, other people who would understand without words.  But what if they don't like me? Then what? I'd be on this journey without women support? That is not the life I have come to know or want to live.  My girlfriends have always been sources of constant support and true lifesavers, a life without women friends is not one I want to live in.  So it was extra, vitally important that I connect with these women, that they like me, that I like them.  Weird how you can so desperately want to be friends with people you hardly know at all.  Must be like wanting to sit at the cool kids table at school, and I REALLY wanted to be allowed to sit with these cool kids.

Shockingly, I was late for dinner - I could blame my husband but he's just a cog in the real problem which is moi.  They are already seated in a big booth and I belatedly get the chair at the end.  I guzzle a bad rasberry martini, chow half an undercooked burger, and we talk about...everything.  The kids, our genes, our struggles, our sadness and rage, and we wonder why there is soap in Aimee's water glass and if Stacey really looks that good because of formaldehyde.  These are regular women, parents, moms of young kids, it's a typical dinner full of laughs.  They are strangers, but I recognize them.  I recognize the flashes of agony across their faces, the stress in their eyes, their worry and their all consuming love with their precious kids.  Our precious kids.  These women, they live in extremes, like me.   It's like getting together with a relative you've never met - nothing in common but blood, yet somehow that's everything in common.  We all have a Fragile X, that we all gave to our sons, and this has bonded us already, before words.
One of my favorite quotes is "Most people have more than one soul mate. You may already be in several soul mate relationships with friends and loved ones. A soul mate can come in the form of a life partner, treasured friend, child, or lover. A soul mate can be someone with whom you share a spiritual path, a joint work in the world, or a commitment to be parents to certain souls. It can be someone whose growth you are sponsoring, such as a child...." - Sanaya Roma.  Was I at dinner with some soulmates????

After dinner, as only moms can, we started discussing gag reflexes and vomiting.  As happy as I was to find other moms to talk about topics that other parents would only cringe at, I started to feel...not right.  Kinda sick actually.  And they went on, and on, and ON about the vomiting.... It started to make even me feel a little sick.  After I excused myself to go to the bathroom I decided to head out for my hour trek home.  The ladies had refilled their drinks and were sticking around, and I wanted to also, but I felt a need, a sudden compulsion actually, to go and flee and escape.         
I made it 10 minutes down the road before I had to pull over into a McDonald's parking lot where I opened my car door and promptly puked the entire contents of my dinner into the well lit parking lot.  It only took my two more times and an hour before I was home, puking into my own toilet and shivering feverishly in my own bed.
Yep, I think I made a pretty good impression.


  1. We have monthly coffee meetings and they are just like your dinner was - a meeting of moms and dads who GET each other, like no one else can!

    I hope you are feeling better!

  2. A friend of mine forwarded me your blog..I also have a son (and daughter)both diagnosed with the full mutation. I did start a "support" group and I am finding that even in the realm of special needs, we have many diiferent chanllenges! Love to chat with you and your new gal pals...I live in Townsend!


Note: Only a member of this blog may post a comment.