This list is cold, emotionless, and almost comes across as grotesque if you are reading it with fear already in your heart. The sharply angled words on this list tore apart my motherhood dream and became almost like a "side effects" commercial gone wrong.
Now the list has become a part of my life, and I think that whoever made these lists didn't capture the spirit of their assignment. Kind of like if someone was told to describe a Christmas celebration and they said only "Might include an evergreen tree and extreme cold" the end.
Down syndrome is no longer just a list- it has become a part of my heart beating outside my body. And as I was thinking on this list the other day, I decided to rewrite it for myself- with the spirit put back in.
Those "short fingers and small hands" are to me those sweet, warm hands that reach for mine and fold so perfectly into my awkwardly large hands. These tiny hands hold a crayon so perfectly, dress herself with such finesses, and tenderly hold onto her doll babies as she goes throughout her day.
"Flattened facial features" describes the most delicately beautiful face that fills my entire world with joy. Those cheeks are the ones that curve upward into the most gleeful smile imaginable. The extra flatness across her eyes and nose, adds a sort of exotic beauty- an air of mystery- a unique kind of charm.
"Gap between her toes" is just a feature of the tiny feet that staccato through my house as if performing a song of victory with every confident step. The feet that run into school full of independence and pride. The feet that walk toward me tired with a "good job well done" theme when school is done. The feet that climb, jump, and run. The feet that keep up with her very active brother every step of the way.
(Miss Flexible not a fan of her bike helmet but was a huge fan of family bike ride time)
"Short height" means she stays in each size a little bit longer which makes is so much cheaper to dress her fabulously. Her two year old brother has long passed her up in height. But as she needs more help with certain things, it makes it so much easier that she is smaller and lighter to carry around.
"Possible vision problem or crossed eyes." Whelp she would get vision problems from me and her Grandmas anyway so…. Also, her glasses (which are in the shop right now) turn her into a mini profession/model/intellectual faster than you can say "cute baby". Her othomologist says that because of her flattened features, it makes the eyes look even more crossed than they are. A sort of "crossing mirage" if you will. She has had surgery for crossing. But I will say- these eyes- crossed or not, bespeckled or not- they miss nothing. Her favorite is "reading". She reads all the time. Her eyes manage this particular hobby quite nicely.
"Will most likely resemble one another" While she does have features of Down syndrome, her brothers will never ever be able to deny her. #twinsies #triplets I think she definitely looks like our family first, Down syndrome second.
So I think when doctors hand over the list to new parents shocked with a new diagnosis, they should include all the facts. Like- this list really means nothing. Except to tell you- you are about to have a baby. A super cute, amazing baby. A baby who will rock your world in unexpected ways. A baby who will have struggles and strengths. A baby who will steal your heart and make you wonder how your life even existed before this baby came into your life. A baby who might have some extra health problems but who was paired perfectly with a fighting spirit to overcome and thrive.
So here you go. My Christmas includes more than a stark evergreen tree and extreme cold. It includes twinkly lights, presents, sugar loaded baked goods, a spirit of happiness, plenty of snow, Christmas movie marathons, a story of hope, and so many more awesome things (second picture down is the children practicing for their Grinch auditions. Carter won.)