Special needs, siblings, and screw ups
“Mom! We just realized 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.
This happened last year when we were offered an amazing scholarship to attend a special needs family camp in June. Our children Polly and Evangeline (with Down syndrome) would have one on one aids for the week. There were promised bonfires, variety shows, a cabin designated just for us, and other families walking the same special needs road as our family.
My husband 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. We didn’t pay attention to anything else on the schedule because we were so excited about the opportunity.
Our older girls Elaina and Zoya, both typically developing, had been diligently rehearsing lines and blocking scenes for their school play. Zoya especially was excited about the opportunity to participate.
A few hearts broke open a bit when we figured out our family’s scheduling snafu.
How many times has things like this happened?
More times than I care to admit.
Our family life is complicated because of special needs
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. Special needs complicate our lives. Things like this happen. I over book, I forget to schedule play-dates. I miss the deadline to sign someone up for an extracurricular activity.
It seriously makes me feel like a schmuck.
What have my older girls lost because of special needs and a mom who can’t seem to get her life together?
Taking a closer look…
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.”
I knew I couldn’t take credit for my daughter. Those beautiful qualities had more to do with the presence of an extra chromosome in her sisters’ genes.
What do my girls actually lose?
Sure, sometimes they lose extracurricular activities and one on one interactions here and there with their parents.
But I think they gain, too.
Elaina and Zoya are growing up accepting of other people’s’ differences.
They realize that the world doesn’t revolve around them.
They are growing up with imperfect parents who have to apologize for screw ups. They know that people are people and not mini-gods running around in control of their own lives.
Our girls know they are loved to the moon and back.
They day it dawned on us that Elaina and Zoya would not be able to participate in their school play, I got down on Zoya’s level and apologized. After a heart to heart talk, we decided that as a family, we’d forfeit the play for camp. But I still wanted to validate her loss. “You are allowed to hurt, honey, because it hurts, and it doesn’t seem fair. I will try harder to keep better track of things next time.”
I can’t promise my children this won’t happen again. But I can promise them that they are seen and heard, and that they matter just as much as their sisters with Down syndrome to me, and to God.
That’s all I can offer.
And I will.
P.S. The girls had an amazing time at camp last year! We’re counting down the days to return again in June.