Monday, August 18, 2014

Rewriting the Down Syndrome List

Like most new parents who receive a Down syndrome diagnosis for my child, I was given a list. A list of potential features/problems to expert.

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.
The "simian crease" is the line in the palm of her hands that tells me where to lightly stroke as she lays her head against my shoulder and we watch a movie together.

"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.
"Small nose" the tiny hill in the middle of her face that decorates it perfectly. The exact same nose as both her brothers.

"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.
"Short neck"? The back of her neck also includes extra skin- from the cysts that grew there during pregnancy. I have discovered that this is the perfect spot for kisses. A ticklish spot- her neck is guaranteed to get belly laughs that will put a smile on any face. This necks rocks a set of pearls like no one's business. This neck holds high a head full of blonde curls. This neck turns quickly as soon as she hears the smallest sound of chocolate being eaten in the farthest corner of the house.
"Small, abnormally shaped ears" the place where I gently tuck her hair out of her face. Also- these ears are the holders for whatever blingy earring set she is wearing that day. The ears that hear me say "I love you". The ears that take in the world around her- and then she responds accordingly.
"Upward, slanting eyes" are the almond shaped windows into my daughter's soul. The most beautiful soul housed in the most beautiful of eyes- this unique shape only adds to the beauty that is Addison.
"Poor muscle tone" means that when she wraps herself around me for a hug, her entire body melts into mine with a warm grasp that makes all other hugs suddenly seem lacking in comparison. When I pick her up in the morning, there is something very cool about the way she melts into my arms, rag doll fashion. Her arms reach up to hold onto my neck, and her face presses into me. Never do I feel needed and loved more than when she lets me carry and hold her.
"Excessive flexibility" means that she does splits and awesome gymnastics tricks like nobody's business. Someday we will find a place for her to channel this skill. But for now? She wowed the socks off of her swim class teacher last week as she did the splits in the water…while swimming.
(Miss Flexible not a fan of her bike helmet but was a huge fan of family bike ride time)
"Tiny white spots on the colored part of her eyes" describes to me blue eyes flecked with extra goodness and love. It's like she has bits of cloud floating in her blue eye skies.

"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.
"Extra large, protruding tongue" honestly she has never once had her tongue protrude- but if she did, I'm guessing it would be to stick her tongue out at me with the sass that I have come to associate with her personality. She does struggle with speech, and I think this does go back to having an extra large tongue (with extra small mouth). But she works so hard, and has had huge success in this area. This tongue is the one who says "mommy" and "Carter" and "Ewi" and "Daddy". This tongue is the one who tells us what Addison wants. This tongue is the one that tastes her food and has told her that she definitely likes chocolate the best.
"Intellectual disability, mental retardation" She knows the list says this, and she uses this knowledge to always pretend that she doesn't understand instructions (she does)- while she then does whatever she wants, grinning at pulling yet another fast one over on me. #evilgenius There is a difference between developmental delay and "stupid". Addison is the farthest thing from stupid. In fact, I would venture to say that oftentimes she is way smarter than both of her Master degree holding parents. Oftentimes things take her longer to learn, but she gets there. In her own time, she gets there and then she makes us all wonder why we were in such a hurry.
"Possible heart defects" She has had two heart surgeries but no actual heart defect. Her second surgery, in fact ended up just being an umbrella shaped objet put into her thigh and carried up a vein to her heart. She came away from "surgery" with only a bandaid. A BANDAID. She was the youngest/smallest person to have this particular procedure done at Boston Children's Hospital. Her last heart checkup included perfection and "AHHHHH she's so adorable!" from all involved.

"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.
And nothing on the lists warned me about the long NICU stay when all her ultrasounds looked healthy, the 9 months of oxygen, the g-tube, and the sleep studies. I think because- no one person with Down syndrome speaks for all. The only thing that remains constant? An individual with Down syndrome is a person. A person with many variables that cannot possibly be contained with a list.

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.)



Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.
 
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