July 5th, 2010
“You are my heart.”
I’ve told stories before of how doctors once said my daughter would probably never speak intelligibly, read, or become a contributing member of society.
How wrong they were.
And how disappointed I still am because of the angst they caused almost nine years ago. I was beside myself with the worry that I would be caring for her forever, and that she would always be dependent upon me.
I’m dumb.
Or maybe the professionals are dumb and they’re so deeply invested in textbook learning and dissemination of false information that they’ve never taken the time to really know people with Down syndrome, nor have they learned that the world is composed of all types of people, and just because one does not possess an advanced degree and a BMW does not mean that life holds no value.
Sorry. Soapbox.
The beautiful creature you see above, who is standing in the ocean for the very first time in that photo, is among the smartest people I know. She’s eight. She’s wide-eyed. She’s always up for an adventure.
And she reads, writes, and, like her mother, fails miserably at arithmetic. She’s a right-brainer, a bohemian, an artist.
And today, she melted my very heart. We were lying on the bed in a futile attempt to take a cat nap, but she was just talking. And talking. And talking. About birds, and her hair, and Toy Story 3. I was getting a little aggravated because I was really sleepy and just wanted her to close her eyes for 15 minutes. We were snuggled under the covers, my cold feet wedged under her warm legs, and I was drifting off.
And then she said to me, “Mom. You are my heart.”
Wow. Right back at you, kid.
In my life, I have never loved another person as I love her. And I don’t mean that I haven’t loved my other two kids, because I have, and do. But this is different. And maybe the way I love her has contributed to the demise of my marriage. I suspect it has. But it’s something I can’t help. Because when she was born, I didn’t love her immediately. I was scared of her. I was terrified she would die. I didn’t want to get attached to this creature I didn’t understand.
Bad mommy. I know.
She was six weeks early. I wasn’t even prepared had she had been completely “normal.” So you can imagine how the words “Down syndrome” felt going down. Kind of lumpy and suffocating. Luckily … and I chose that word carefully … luckily she spent seven weeks in the hospital, learning to eat. A lot of preemies have trouble with suck, swallow, breathe. And those seven weeks were the darkest of my life. I barely functioned. My two older kids loved it because everything they asked for, they received. I couldn’t make a decision, so I said yes. I was craptastic.
But that ended, and she came home, and she blew me away. I had to adjust, and reconfigure some plans. But that kid went everywhere with me, and for the most part I molded her around my life, instead of the other way around. It was decided that she would not be treated differently. She would have to meet expectations, and work for what she wanted, and pull her weight. And she does.
And she’s amazing. Her sense of humor has recently emerged, and her corny play-on-words jokes make me both laugh and cry. Because she does come up with them, and because she can.
Down syndrome is not easy. But it’s also not a death sentence for parents. No matter the functional level of a child with Down, there is joy, and hope, and a big, bright future.
I used to tell myself that if my daughter could communicate, I would be happy. Then I said I would be happy if she could learn to read. Then it became the ability to function at the level of a fifth grader. (Jeff Foxworthy would be proud.) But I have clearly been putting limitations on a person that surpasses expectations, and laughs at me as she does it.
She’s a great kid. She takes me by surprise all the time. She’s my heart.
