She Made Us Who We Are

Originally published Nov. 10, 2010

Thinking about my family, I realize we have changed over time. I guess that’s normal — as children grow and parents age, the identity and character of the family shifts as well.

But in my family, it was Beth who made us what we are.

When I was six, Beth was born with Down Syndrome. I remember us learning words like “trisomy” and “mongoloid” and slowly realizing that our lives would be changed completely. Not just in the way that a new baby changes a family, but in a way that made us all realize we’d be expected to do more to help her.

It wasn’t so much that my parents told us this; we are a family that doesn’t talk much, so it was not an explicit instruction. It was a dawning realization — for me, coming as I watch our Mom take time every day to teach her to read.

The three older brothers had their own lives — teenagers in  a world mysterious to me. Yet Beth reached them and they too responded. She brought us together.

She taught us how to really see each other. She helped us learn more about ourselves. She gave us our identity — with Beth we practiced patience, gentleness and laughing. With Beth, we thought and explained things to each other more. She made us a better family.

And she still is teaching us.

We’re all adults now. Even Beth, the baby, is 46 and now experiencing a new phase in her life. And we are again recalling how to deal with changes — although the changes this time involve  her memory loss, confusion and physical incapacity.

Not that it’s easy, but we are realizing that we need to have crucial conversations about planning for the next stage of her life. And making it easier for her to transition to it.

We’re not done with these crucial conversations, we don’t have them often enough to be comfortable with them. I worry that critical time is passing while we tiptoe around emotions, duty, responsibility and avoid our own uncertainty.

Beth, again, has focused our family on the important things. Now it’s up to us to respond and raise our own expectations of each other.

I don’t know how this story will end.

I only tell it in hopes of learning more potential endings than I can imagine. I look for connections with others who have had similar experiences; I wonder if my experiences (as imperfect as they are) can provide help to others.

I’ve recently joined a small group of folks who have adult siblings with Down Syndrome.. We’re just now organizing ourselves, providing support to each other and hoping to bring others along. We also have big dreams to draw in medical research, to help develop the understanding of the Down-Alzheimer link, to provide appropriate care facilities for our siblings.

We may not be able to change things for Beth. But Beth’s experiences may be able to change things for someone else.