What they lose … thoughts about siblings of kids with Down syndrome

“Mom, we just realized today that our school play is during the same week as family camp. We had to pull out of the play. We gave our lines to other actors,” my eleven-year-old daughter Zoya looked at me, alarmed, tears forming in the corner of her eyes.

About a month ago, we were offered an amazing scholarship to attend a special needs family camp in June. Our children Polly and Evangeline who have Down syndrome will have one on one aids for the week. There will be bonfires, and variety shows, a cabin designated just for us, and other families walking our road of special needs.

Sergei and I jumped at the chance. We signed up right away, knowing that we’d have to pull the four girls out of school for the week, and not paying attention at all to anything else that was on the schedule.

Oops.

Our older girls Elaina and Zoya have been working on their lines for the school play. Zoya especially was excited about the opportunity to participate.

When they came home today with doe eyes and alligator tears, my heart cracked a bit.

How many times has things like this happened?

More times than I care to admit.

Our family life is complicated because of Down syndrome.

Wait, that may not be entirely honest.

The honest truth is this:

I can’t keep up with everything that should be done for my four girls and so things like this happen. I over book, I forget to schedule play-dates  or to sign someone up for an extracurricular activity.

It seriously makes me feel like a schmuck.

What have my girls lost in life do to special needs, Down syndrome, and a mom who can’t seem to get her crap together?

A few years ago, I sat in a kid chair behind a small desk at a parent teacher conference. My eyes welled up as Elaina’s teacher talked about what a great leader she was in the class.

“She’s compassionate. She’s kind. She looks for the underdog and goes out of her way to help.”

At that moment I knew that I couldn’t take credit for these things. No, those qualities had to do more so with the presence of an extra chromosome that showed up in her sisters’ lives.

What do my girls lose?

Sure, they lose extracurricular activities, and time one on one with us sometimes, but I think they gain.

Elaina and Zoya are growing up accepting and aware of other people’s’ differences.

They are growing up realizing the world doesn’t revolve around them.

They are growing up with imperfect parents who have to apologize for screw ups, but also, they know they are loved to the moon and back.

I got down on Zoya’s level today and told her I was sorry. “You are allowed to hurt, honey, because it hurts, and it doesn’t seem fair. I will try to keep track of things better next time.”

That’s all I had to offer.

I can’t promise that things like this won’t happen again. But I can promise that she is seen and heard, and that she matters just as much as her sisters with Down syndrome to me, and to God.

That’s all I can offer.

And I will.