Post below can be found on E's mom's blog. Special thanks for her for permission to repost here.
"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.