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gillian marchenko

Author and Speaker

9

When mom screws up … thoughts about jipping siblings of kids with Down syndrome

05.22.13

school

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.

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  1. TUC says:

    This is probably more due to having 4 kids than kids with extra chromosomes 🙂 I am always forgetting something or having to choose between my kids who gets what activity when there is overlap. I often wonder how spoiled (or perhaps awesome) my oldest son would be had he been an only child! Instead through the years he gave up more and more to his sibs and so it goes with big families.

    • That’s true, I’m sure! Although, I find a lot of my attention and energy going towards therapy, development, and doctor visits, but yeah, a big family is probably always crazy.

  2. Heidi says:

    Oh Gillian, thanks again for you über transparent honesty! Things like this happen to me too, at least a couple big screw ups every year. From overbooking or forgetting to put someone on the calendar and for those two times their are always 10 NEAR miss booboos. Always due to me just not being careful and organized. Thanks for reminding me I’m not the only ditzy mom out there. We have the best intentions and love our kids to pieces. Thanking God I have (and I know you have) forgiving kiddos. Love you!

  3. Gillian, you nailed it! First by being a parent who admits she messed up and seeks forgiveness. Second, you’re right about your other girls. They are not losing by having a sibling with Ds, but rather they are developing character qualities and traits that will make them into compassionate, loving adults who will want to make a positive impact in this world. Thanks for the great post!

  4. Chani says:

    Wonderful article! I think as parents of special kids, we need to give ourselves a break and often. However, I also believe we do need to own it when we screw up and you did that wonderfully! I recently apologized to my son who was beside himself in tears over a similar situation. It didn’t click until he said, “Why is everything about Lana?”. I realized in that moment while I view most of what he “misses out on” is cosmetic and what he is gaining is so much more, he’s still a kid and I am imposing adult values on him and not taking his feelings into consideration. So I fully apologized with no “buts”. And then gave myself a break because I felt just awful and ditzy. 🙁

  5. Galit says:

    As a mother of 5 typical kids, I do wonder whether therapy etc. really affects siblings any more than another siblings music lessons, soccer practice etc.? My kids are always tagging along to each other’s activities, and yes, it is a lot of work to avoid double booking (thank G*d for carpool buddies!)

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