It’s Not About Blame
She paused mid-sentence, an empathetic tone intervening as she spoke words she’d probably uttered a thousand times before to parents throughout the years.
She seemed to understand the importance, though…the nuance in her voice conveying the magnitude of her message, while she made certain to catch my gaze and connect, despite the limitations surrounding our telehealth appointment.
“Even if we find that there is a genetic explanation for Leo’s Autism and epilepsy, it’s important to note that this isn’t about blame…”
Startled by her candidness, I nodded, silently providing acknowledgement that it was okay for her to move on to the business at hand.
She went on to explain the ins and outs of the genetic testing Leo and I would be undergoing, zeroing in on specifics, as doctors do. I absorbed what I could, taking notes diligently, even as my mind lingered on that infamous word, long after it had been spoken.
Blame.
I, like so many parents, moms of children with special needs, particularly, have felt it deep in my core.
It has washed over me during various stages of our journey, resurfacing in moments of pain, and fear…anger, and confusion.
The parallel is guilt, of course, yet for what, we’re often never able to pinpoint.
When I heard the diagnosis of Autism linked to Leo for the first time, I blamed myself…
In the moments of calm, following a seizure, as my boy lay sleeping soundly in the dark of a hospital room, I blame myself…
When he struggles to communicate, and frustration consumes his body…I blame myself.
In moments I least expect, when I thought I’d given myself the grace to move past these emotions…
I blame myself.
It presents itself subtly..
At times, remaining buried just beneath the surface..
Yet bubbling over during the moments of desperation.
The struggles and the challenges my boy faces to dissipate, they continue to elude us…and the fact that those struggles may always remain to some degree shifts the weight of that reality smack on my shoulders.
Despite how often others have told me.
Or I’ve told myself.
No matter how glaringly irrational and illogical it may be.
The emotions exist.
And while the self-blame associated with Autism might diminish over the years, it transforms, manifesting into feelings of me not doing enough.
Not knowing enough.
Not fighting hard enough.
I know that Autism is a part of who Leo is, and who he will become. And while it contributes to the many beautiful qualities he possesses, the juxtaposition of feelings I have regarding the struggles he faces, is something I will always wrestle with.
Last week, we awoke and I gently swabbed the inside of Leo’s mouth, and mine with the tools provided.
I labeled the viles, and sent them off to be analyzed in a lab by those who don’t know us- Who don’t know my boy and all his wonders.
They don’t know his best pal aside from Mom, and Dad, and Baby sissy is his Sheriff woody doll. That Leo takes him everywhere, the clickity clack of Woody’s feet a familiar sound in our home from morning to night, bringing insurmountable joy to our boy.
They don’t know that two days ago he gently placed his hands around my face, looking intently into my eyes, before smiling sweetly and skipping off to return to his preferred activity.
They won’t know how important those brief ten seconds were in our day.
They will come back a few months from now with our results. Which may provide a why for Leo’s Autism…or at least a partial explanation…or perhaps nothing at all.
But as the doctor said, it’s not about blaming anyone.
And even though it may be difficult for me to accept, I know she’s right.
My focus will continue to center on celebrating Leo, and the amazing person that he is, while helping and supporting him as best i can through the challenges he faces…
Always together.
Written by, Ellie Whetzel
Ellie Whetzel is a wife, Mom, and blogger who writes about the ups, the downs, and everything in between of life with her extraordinary son, Leo, who is on the Autism Spectrum. You can follow their journey at: https://www.facebook.com/mylifewithleo/
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