It’s hard to be a special-needs mom in a typical mom world, it just is. When other moms in my neighborhood get together with their children, the mood is jovial, the cares are few. The kids fly off together exploring rooms, toys, finding things to entertain, their imaginations keyed up like violins. The moms gather in the kitchen like moths to light to swap stories, the minutiae of their days. The conversation is spirited and topical and tinged with neighborhood gossip… did you hear so-and-so did this? no! really?
It is more than that they all seem to speak the same language — which they do, of course. It’s that they do so without straining to hear whether one of their children has figured out how to unlock the screen door and is now running up the sidewalk about to dart into the path of a speeding car…
(It does not matter that I’ve already flitted back and forth “Just to check!” at least 15 times to confirm my worst nightmare only to find him still sitting there with a spray of playing cards around him. I’m certain the next time he will escape.)
No one else has to keep an eye on their still not potty-trained child because he’s making some suspicious sounds across the room.
As a consequence, I never fully participate in these play dates — nor do I enjoy them very much — even as I crave them. I am certain that my cheeks blaze with the embarrassment of being THAT mother, the overprotective one, the one who thinks everything is of possible peril to her children.
We are fortunate to live in a neighborhood rich with community. Neighbors know and look out for each other — we are so fortunate. There is an active and caring mom’s group, one that provided home-cooked meals to my family for three months after the boys were born. Most everyone knows that my boys are on the autism spectrum. A very few know what that actually means.
This summer has been punctuated by invites to join the neighborhood in pool outings and afternoon play dates and because of our incredibly packed schedule, we have missed most of it. I say that I’m too tired to go and that the boys are exhausted at the end of their long days, but what I’m really feeling is a certain weariness of spirit, the separateness of being the special-needs mom, the isolating feeling that keeps me from the easy banter at the kitchen table. There is this heaviness weighing me down.
Like now, here with these lovely women who just want to be my friends, who try to include us at every turn, who have never once been unkind to my children. How do I shake this weight? The camaraderie of shared experience, that’s what I crave and what brings me here again and again — more often to read these days, but increasingly to share. To share and shed some of this fatigue, my spirit fatigue.
And yet here? Now? Watch my spirit visibly lift with the dazzling smile that John flashes me right before rushing into my arms. I feel lighter just listening to him ask for a dvd in his tiny voice: “Yummy, Yummy, Wiggles?” My heart fills and spills over just listening to Sam read about weather and cyclones.
My boys are both my weight and my light, forever linked, teetering for balance. And I think, There it is! The shared experience.
Without a doubt, though, my spirit could use some serious personal attention, some me time, if you will. My blog friends, do you know what I mean?