He gently snores in recovery as I adjust the blankets around his bare shoulder, the rough cotton gown that afforded him some modicum of privacy having slipped down his chest. I carefully watch the plastic apparatus in his mouth that keeps his tongue from blocking his airway as he breathes, see him slowly working his way out of slumber. We may be here for minutes, we may be here for an hour, as we see how long it takes for Justin to slough off sleep after his sedated MRI. My husband is busy with paperwork and discharge instructions so I use the time to sit, watch my boy, and assess our day and how it all went.
All in all, a banner day for my severely autistic boy.
This is not to say we didn’t have our rocky moments. My son is religious about keeping hydrated, and of course only a few sips of water are allowed the morning of the procedure, which was challenging. I was thrilled to find out last week that the hospital didn’t have any water fountains, as these are Justin’s “hydration stations” everywhere we go (we actually build in extra time on excursions just to accommodate his liquid cravings). Even though he was verbally requesting “juice” and “water” every thirty seconds I thought we’d won when my son took off down to the other end of the waiting area, having discovered a door cracked open maybe six inches wide to a room sporting a sink and cups for staff. A super fun ten minutes ensued where I had to body block the kid who weighs what I do now as Jeff continued to register, but eventually he relented after much protest and let the kind nurse lead us away to our second holding station.
This one did not have a sink. It’s sad what makes me elated these days.
We had another moment of semi-panic when they told us his procedure was scheduled for ninety minutes later than they’d rescheduled us for three days before (there was no way we’d keep that kid from water for five consecutive hours), but the staff straightened it out for us. Justin compliantly stretched out on his gurney, and they even let me lie next to him as they escorted us down the labryrinth of hallways that led from the children’s hospital to the main hospital where they do sedated MRIs.
He was a champ through the whole thing. The staff let me sit next to him as they administered the mask with the gas, which he didn’t like very much but tolerated. We sang him songs to help him slide into sleep, and within minutes he was out as they carefully lowered him onto the table that would send my boy into the tunnel to check for any abnormalities in his brain structure.
I admit, I found myself tearing up at his courage as I left.
So for now I sit, and watch his chest gently rise and fall, see him in a static state which he only shows us at home when he’s unconscious. I think about why we’re here, how this test probably won’t give us any answers but will just rule out the scary stuff that my mommy gut says he most likely does not have. I think about these “staring spells” he’s been having since October that have dissipated slightly in number and intensity, episodes that rob him of his joy in the world and make his mother more worried than she usually is. I think about how much I want answers, but how I want treatment more. I think about how I can’t help but project how these episodes have such far-reaching repercussions- if we don’t eradicate them will they keep him from attending camps, participating in a day program after he turns twenty-one, prevent him from living in the group home he will certainly reside in when my husband and I are gone.
Yes, I’m a planner.
I let these thoughts course through me, gently discard them from my present state as I’ve learned to do to keep my sanity. Instead, I focus on this- that we have wonderful doctors working to help him in multiple disciplines. That we have seen slight improvement in the past several weeks. That this might not be seizures, or autism-related catatonia- it might just be extreme OCD, which is not in itself life-threatening, although it can be way-of-life threatening. I remind myself that every single challenge Justin’s multiple diagnoses have put before us we’ve met head on, and if not conquered, have ameliorated so that he has a good life.
Yes, I’m proud to say my severely autistic son has a really damn good life.
My mind wanders to the other reason I want answers, which is that when Justin is enmeshed in these episodes, nobody can witness his true, loving self. I am not unaware as to how my son presents to the typical world. When we are out and about there is a serious quality to him, no smiles, no eye contact, just a burning need to get to his destination or leave a place or acquire a carb (that last one I can truly relate to). We’ve taken him to his brother’s cub scout events, to karate, on errands, and fun destinations where routine must be followed and little joy is shown, although I know in my soul he enjoys the fun places. With one eye watching him and the other trained on those around me I know how he appears- devoid of emotion and utterly fixated on his goal. There is a hardness to him, a purpose that must not be denied.
He does not appear connected to those around him at all.
But with those he loves, he is, oh how he is. There are countless kisses for me and his father throughout the day, “forehead kisses” for his grandmas, smiles for the staff at school. We need to build in time to hug every morning before school and every night before he sleeps. Every single day there is a gesture of love for no reason, accompanied by a smile and that intense eye contact he’s always bestowed upon me.
And the thing is, these “spells” are robbing him of these moments, and I want it to stop. I want it all back, the connectedness, the kisses, the gift of gaze we feel so lucky to be witness to.
I want him back.
He stirs, and one of the many compassionate nurses who have helped us today comes quickly to see how he’s doing, telling me it may be a while longer as he fights to come to consciousness. She asks me questions about him and his life, and I regale her with how well he does at school, his passion for horses, his affectionate nature. She nods and I know she believes it all, and somehow it is a comfort to me.
I always want the world to know his generous soul.
Soon we will be discharged and will make our way home. There will be laundry to fold, a cub scout den meeting to attend, lunches to make. Based on other minor operations Justin’s had I anticipate he will be back to himself in a few hours, and life will go on.
And my silent prayer to the universe asks that this boy returns to his normal soon.
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