Tuesday, December 18, 2012

Inside Kimani

Always I wonder what she sees, what she knows. Always I wonder who she is on the inside.

If I could paint her brain it would look like this...

And if I could paint her heart, it would look like this...

And if I could paint her soul, it would look like this...

And if I could paint a little Kimani inside herself, it would look like this...

But I did not paint those pictures. It was Kimani who painted herself from the inside out.

Monday, December 17, 2012

Healthy as a Horse (with Down Syndrome)

Autumn lost her balance and fell backwards at school on Friday. It happened in the Motor Room (the gym) and “she hit nothing on the way down and landed on nothing but the padded floor.” I showed up for the Hanukkah Shabbat party about two minutes after it happened and she was still being held and comforted by a teacher. When they handed her to me I noticed she was bleeding from the back of her head. (This part of the story deserves a post of its own but probably isn’t going to get one.)

(a happier moment at school)

Fast-forward to Saturday... The boo-boo on Autumn’s head was still bothering her and whenever we tried to get a good look at it she would do the “STOP PULLING OUT MY FINGERNAILS” cry/scream. So I called the Ped, whose on-call service told me to take her to urgent care.

In the intake room I was asked to fill out the usual paperwork. Under the Surgical History heading I wrote AV Canal repair, and under Medical History I put none, because Autumn has never been sick or hospitalized for anything. Twenty minutes later, we were ushered into an examination room. (Which, by the way, Autumn refused to walk into. She backed herself up against the hallway wall and started crying, “No, no, no.” Smart chica.)

The nurse asked for the medical sheet and perused it quickly. She gave me a smileless look and said, “We need to know her medical history from the day she was born.” My brain fired off some smart aleck response but my mouth said, “She was adopted at 10 months old and has never been sick, except for having some reflux as a baby.”

My response produced an upgraded “I think you’re lying” smileless look, and the nurse questioned me, “No bronchial issues? No RSV? No heart problems?” I jumped in with, “She had an AV Canal defect repair and her cardiologist says she is fine now.” The inquisition ended there, but picked up again when the doctor came in. He pushed just as hard for some nugget of medical history or past illness.

It wasn’t until we were long gone from there that I realized what had happened. I had not listed Down syndrome as part of her medical history. It had not even occurred to me to list Ds as part of her medical history. And why would it? Down syndrome has never made Autumn sick or caused her to be hospitalized. But that urgent care team must have thought I was leaving out the biggest medical history treasure of all.


And just because I know you like to know these things... It was a puncture. It should have had a stitch. It is still gucky and we are treating it with topical antibiotics. That’s right, she fell on nothing and it punctured the back of her head.

Wednesday, December 5, 2012

Grateful for a Plateful

I admit that I often find it hard to be thankful when it comes to Kimani. Whenever I try, I find myself comparing her situation to what might have been worse. As in, I am thankful she didn’t die like so many of her NICU/PICU warrior friends did. I am thankful she can walk and climb because I know some babies that suffer brain damage can’t. I am thankful she can hear, and for the most part see, because meningitis tends to destroy those senses.

It makes me wonder about the feeling of gratefulness, and how it comes about. It almost seems to me that I have some imaginary baseline for everything in life, and if something rises above it, I am easily thankful. But Kimani is far from any mark I may have etched in my subconscious and finding things to be thankful for feels more like relief than a bona fide moment of gratitude.

Without this genuine gratefulness, am I living a life of poverty regarding her? I keep searching for something in her that belongs to her from before, a piece of who she was supposed to be, and I can’t find it. I swear I have gotten a glimpse of it but I cannot hold it long enough to decide if it is in fact her... the real her, or if it is just wishful extrapolation.

“It is what it is. She is who she is,” You say. And I say that too most of the time. But I promise you that it really isn’t that simple. There is a loss so ever-present in her that you cannot just accept it and be peaceful. It is a loss that cries out daily for recognition. It is a loss so powerful that it wills you into its tribulation, and you are unable to walk away without a secret wish that it would give her back.

I started thinking about this whole thankful business last month when my Facebook feed was flooded with statuses of what my friends are thankful for. I wanted to be thankful too and I was mad at myself that I could not come up with anything to post about. Then, just before Thanksgiving, a little craft project came home in Kimani’s backpack. It was a paper plate with pictures of food glued to it and it said, “Kimani’s Thanksgiving Plate.” I wondered if Kimani chose the foods or if the teacher did. I wrote a note asking about it and her teacher said that she chose the items from magazine cut outs that were placed in front of her. Kimani loves all the foods she put on her plate... pretzels, strawberries, pasta, peanut butter and jelly sandwiches, and pizza.


Just looking at that plate covered with two of everything she loves knowing that she chose those foods herself made me so happy, so very very happy that I finally felt it... gratitude. Truly, like Pooh Bear, I was grateful for a plateful.