Her halting words barely rose above the rumble of the air conditioner. She read laboriously as her afternoon applied behavior analysis (ABA) therapist guided her steadfastly. Suddenly she exploded in frustration; her hand shot out like the strike of a threatened snake and hit the table with such force she made herself cry out in pain. She stood and knocked the chair to the ground screaming, “This is too HARD! I can’t do THIS! I can’t read THIS!”
Across the room my heart shattered for the seemingly infinite time. My chest disintegrated as I remained in a similar steadfast and stoic pose to her behaviorist. In the life of a parent of an extraordinary child, a child with immense special needs, with a rare disease and its accompanying features, including autism, the heart grows the ability to shatter and mend, shatter and mend, in an endless cycle.
My heart broke and I wanted to run and scoop up my baby girl and whisper all the sweet nothings that I understand so deeply and intimately about her life and let her tell me all she needed to about how hard it was to read that book, but I knew I couldn’t. There would be a time for that, but that time was not then as much as it grieved me.
She moved to the couch still screaming like shrapnel flying out from the center of an explosion. Her ABA therapist calmly spoke to her and helped her identify what she could do to help soothe herself. An audible breath hummed across her lips as she nuzzled down into the couch and let out a rattling grumble. She burrowed deeply into a blanket and covered herself in it’s soothing fuzz. Moments later she emerged from her cocoon ready to face the book again.
The pieces of my heart rose in my chest and found their matches reconstructing like something out of the Matrix. I watched her strength in awe, still forced to freeze my facial expression in stoic stillness until she completed her task. I wondered if this cycle would continue like some amusement ride in perpetual adrenaline-laden motion through all her stages of development and my mothering. I felt fragile like the glassen shards of my heart.
A calmness suffused her body and she attempted the remainder of the book. Still halting and jagged she succeeded and exploded, but, this time, in a smile bursting with pride that shone brighter than the rays of midday sun that peaked through the windows’ curtains. Stoic no more, I scooped her up as my heart swelled with pride and relief. Until the next time.
I wished more than anything things for her were easier. Second to that, I wished that there were some way to know if my mothering, and all the therapy, were helping her along in her journeys. For now, I follow her and my heart down the roads love and progress may lead.