The Spirals

We got back on Monday from a 3-day weekend in Shasta (Upstate), and I must admit, a little change of pace from the every day routine felt like we had gone for a month. Zoé was a trooper in the car (she took a much needed nap during the drive)and I can foresee some wonderful vacations in a minivan through the National Parks we are eager to visit.

We were back at PIP (Parent Infant Program) before we knew it and it felt also good to be back with what I like to call: "My Extended Family" or the "Sisterhood of Special Need Caregiver Moms".
We are lucky to spend two hours weekly, one on Tuesday and one on Thursday to simply be together, without our kids to share thoughts, feelings, ideas, tears and peels of laughter.
On Thursdays, dads usually come, and I am one of the only moms with Marie to be there. I like the down-to-earth and grounded thoughts dads share, for we, moms are sooooo emotional. Well, I know I'm speaking for myself here...

So on Tuesday, we talked about what it feels like to live with the "look" of people, the look of pity, of "I don't want-to-look-but-I-do-from-the-corner-of-my-eye", the look of "I'm trying to be sympathetic", the look of people who simply don't know what it's like to live with what Suzy referred to as "the downward spiral of sadness", and I can so much relate to that spiral.

Sometimes, mine goes down and I feel sadness, fear, outrage, anger and ask myself "Why did this happen?" or "How did this happen?", and I let my feelings of grief permeate all my thoughts.
I'm glad I can also reverse that spiral, and then, I make it go up, full of hope and happiness, full of life and of all the teeny weeny milestones Zoé accomplishes every day!

We also talked about the fact that people who have "neuro-typical" children tend to take for granted what is so precious for us.
The first step, the first giggle, the first dada or maman, and even the first smile, which came so late for us. I tend to see all these things with so much perspective, and that is what helps all of us, caregiver-moms and dads, to keep going on. It's the perspective, the lens we need to focus on how much life has to offer, how much joy our children give us after all.

We don't need that pity, that "Boy, I don't know how you do it!", we do it, because we have NO other choice and we couldn't or wouldn't do it any other way.

I hope I won't offend anyone out there with "neuro-typical' kids, I am SURE that you value and cherish every milestone your little ones accomplish, as much as I do...it just helps to emphasize it, for me, anyway.

Suzy also mentioned something that struck a chord in me. This is how she put it:
"if we could, there is not one of us here, who would rather have what affects our children" and that just reminded me that what affects Zoé also affects me. I feel the symptoms creeping, but I try to let go of the fear. I must try not to let my imagination run wild. I must be strong for Zoé and David.

The hardest part for me is the loneliness and alienation I sometimes feel. Being so far away from home is the hardest, and being so far from friends, when I could use a little help...but I manage and when Dad comes home at night, that's when the load I've been carrying all day dissipates and I can then relax a bit, and unwind.