“Oh my! Look at those long eyelashes!” When anyone first sees E, they always, always comment on her long, beautiful eyelashes. I’ve always taken a silly pride in them, seeing them as markers of her health.
However, on the day we received her diagnosis of Phelan-McDermid Syndrome, we were handed a list of probable symptoms; “long eyelashes” were listed. How in the world can long eyelashes be a symptom? How can something so beautiful be an indicator of such a difficult syndrome?
So, on a daily basis I am faced with a choice (pun intended). When I look into E’s eyes, I can either see beauty… or a syndrome. I can notice how the lashes perfectly frame her crinkled eyes as she smiles and giggle when there are specs of food in them… Or I can notice Phelan and McDermid. Seeing Phelan-McDermid brings to mind all that may await us: aggressive behavior, seizures, no verbal communication, incontinence… the ugly truths of what the syndrome brings. Or. Or. Or. I have a choice to focus on the beauty. I MUST choose to focus on the beauty.
So, when I set about to memorize her sweet face I will spend extra time on her eyes. On their mischievous glimmer, the way they widen in surprise during peek-a-boo and the way they flutter closed as she finds comfort in my arms in the middle of the night… and I will especially memorize each beautiful, purposeful lash.
May you choose to see beauty today, friend.