Twenty-two

Twenty-two years ago today my daughter, Eliza, was born at home--at 1:10 a.m. on Tuesday, December 11. Her father caught her as she was born and with the midwife's help he also cut the umbilical cord. Her four-year-old brother filled the room with trucks to celebrate her birth. A couple hours later I fell asleep with her cradled next to me. "Someday you'll be the smartest girl in the high school," I whispered. A mini-me.

Late the next morning the midwife returned to tell us that she thought our daughter had Down syndrome. "This," I thought, "is how it feels when your heart breaks."

In the next few days we went to our family doctor and then to the hospital to have Eliza checked out by a neonatologist. They drew blood so that they could look for that extra chromosome. My husband held out hope. Me--I had known from the moment I first heard it that it was true. I had looked at her face when she was only a few hours old and thought she looked a little like a Down syndrome child. I had dismissed the thought as silly new mother worries. Turns out it was reliable motherly intuition.

Down syndrome comes with stereotypes: they're such loving children, so sweet, they like music. Those stereotypes were no more predictive of who Eliza turned out to be than stereotypes about blue-eyed blonde little boys predicted the interesting individuals my sons have become.

Two ironies in particular: some book somewhere said that individuals with DS have thin straight hair. Oh, my. Eliza wishes she she had straight hair. We go to a lot of trouble at times to give her straight hair. What's she got is curls, corkscrews and waves and lots of them. And that loving disposition? Well, she can be a very loving person, but she's always been plenty cranky too. I spent more time walking her through the house in the middle of the night, sleepless and fussing, than I did either of her brothers.

She's definitely not a mini-me, though I too struggle with curly v. straight hair (crankiness, too). It may be that I become more like her through the years. Overtly, expressively argumentative. When we fight (good old-fashioned mother-daughter fights) I descend to her level pretty quickly. Stupid retorts fly both ways. I only wish I could exit the room and slam the door with the same flourish that she can.

But I have grown beyond judging people by their braininess. I do still enjoy being around smart people. I enjoy complexity. But I've been forced to learn to think simply, to break things down into small steps, to limit input to small manageable amounts. There's a lot to be said for spending time with my daughter and all the friends she has made through the years in special education classes and recreational activities. They are really great people--the disabled ones and the regular ones who work with them.

Clarity is one of the gifts Eliza has given to me. Figuring out what to say to her, how to help her with problems--boyfriends, iPads, getting the pillow in the pillowcase and her dresser drawers to close--these challenges force me to talk in complete but simple sentences, to decide what's important, and to communicate it with tact. The simple clarity that I have to use with Eliza works well in other situations. "Use your clarity"works for me--like "use your words" works for preschoolers.

Twenty-two in the developmentally disabled world means the end of public education and the beginning of adult services. Her teachers have done a great job with her, but now it's up to Eliza, and me, to figure out what's next. It's a new phase, one I've approached with apprehension and crankiness.

Probably means I'm about to learn new things.