Yesterday evening was hard for me, emotionally.
Though the pace of life usually keeps me from sulking, on the drive home from physical therapy, I could feel the sadness pooling into my chest, heavy.
Fortunately for me, especially in those moments, I have a companion- so I rang my husband.
“I don’t want to be feeling the way that I’m feeling. I want to be happy for all of the possibilities that Olivia has on the horizon, but it’s just that in some moments…when I see Olivia struggle with her inherent responses, responses that are automatic for others, it becomes vivid to me how grave her condition is, and how much work she’s to endure to achieve even an inch of progress.”
Olivia has dysgenesis of the corpus callosum.
The corpus callosum is the dense bundle of nerve fibers found beneath the cerebral cortex of the brain. It is what connects the left and right hemisphere. It is a c-shape assembly of tissue that allows both sides of the brain to send signals to one another. The corpus callosum is a communicative powerhouse, a crucial hub. It is command central.
In 2018, MRI scans showed thinning, deterioration, and scar tissue in the white matter (some grey) of Olivia’s brain. Most of it resonating deep into her corpus callosum.
This is what set us on the path of her BPAN diagnosis.
So, notwithstanding the facts…we continue to move forward, taking nothing for granted.
We cheer Olivia on when she uses her left hand in conjunction with her right.
We clap enthusiastically when she fully extends her index finger to press a button.
We encourage her, accompanied by tears of astonishment and joy, as she champions this sacred life she’s been given.
Olivia is the most resilient human being I’ve encountered, and she is sincerely the happiest.
Sending love & light on this cloudy day,
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