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Lunch Box Excavation

posted Tuesday April 30th, 2019

 

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Packing lunches this morning, I dumped the contents of Sophie’s bag onto the kitchen table — the only good and fast way to get rid of the loose goldfish crackers roaming around in there.

As usual, her calculator was there, too, as well as her school ID and about a dozen mechanical pencils, most of the erasers chewed off. I’m proud of Sophie for figuring out a good place to store her ID; she almost never misplaces it, a pretty big achievement for any kid, let alone one with Down syndrome.

There were a few rogue items in there, as well. I lined them up next to the lunch bag and paused for a moment. Evidence. I feel like an anthropologist these days, sniffing around my teenagers’ lives. Not too hard, I don’t look at their phones or even poke much in their ever-messy rooms. But if something presents, itself, well….. Can you blame me?

At the bottom of Sophie’s lunch bag:

*1 Costco brand granola bar.

*A Hershey’s kiss in pink foil.

*A Hershey’s miniature chocolate bar with an Easter Bunny drawing on the wrapper.

*A campaign button for a girl running for school treasurer.

From both of my daughters’ earliest ages, I’ve learned that it’s almost impossible to get any information about the school day. It’s like doing journalism — the worst way to get someone to tell you an anecdote about anything is to ask, “Hey, can you tell me an anecdote about X?” You’ve got to go in sideways.

Toss in some hormones and the fact that I’m MOM (pronounced “Mo-o-m,” always huffily) and — nothing.

So when they were little I started asking, “Hey, who did you eat lunch with?” And that often kickstarted a conversation.

But here’s the truth: I’m not sure Sophie has anyone to eat with these days. Lunch has always been the toughest hour (or 20 minutes, or whatever the fuck amount of time they give them) of the day. I relate. I ate lunch in the library when I was in high school. Annabelle, Sophie’s older sister, has her own share of lunchtime challenges. For Sophie, it began in kindergarten with one aide for 100 kids — leading to my request for help opening my daughter’s juice box (and keeping her safe on the playground) and, then, the words I can still hear the principal speak as if it was yesterday:

“If you want Sophie to attend this school, she’s going to have to act like the rest of the kids here. Otherwise, there are other options.”

We’ve skidded past those “other options” for years, and here we are, nearing the end of tenth grade. Some years I’ve had spies in the lunch room. Not now. Sophie has an aide for academic classes; otherwise, she’s on her own.

And I have no idea what goes on at lunch.

I stared at the candy, the granola bar, the button. Did someone give them to her at lunch? Or in class? Was each from a different kid, or all from one close friend? On different days? Or did she find them somewhere? (Not really her style, but who knows.) Did every kid at school get one of those campaign buttons, or only a few kids? Does she ever sit with anyone at lunch?

Is she happy?

That last one really bugs me. Sophie is proud. “Everything’s fine!” she tells me, when I ask. The only clue I get is the texts she sends almost every day — from across the dinner table, from her bedroom, from school around lunch time:

It is hard to have Down syndrome. 

That is evidence I can’t ignore, and something Sophie’s been saying since she was 8. Almost half her life. I still don’t know what to do with it.

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10 Responses to “Lunch Box Excavation”

  1. Once again, thank you for telling your story (and Sophie’s). I can’t imagine what the two of you go through on a daily basis, but just know that both of you are inspiring more people than you could ever know. People that just read the stories and never say anything but can’t be anything but inspired. I don’t often comment, but know that these stories, these LIVES, warm, and sometimes pain, my heart, as any good story should. Keep ‘em comin’.

  2. You are both doing great!! Both your achievements are amazing.

  3. Oh $@;$ you made me cry.

  4. Oh my goodness! So many things ran through my mind when I read that, “It is hard to have Down Syndrome.” It’s heartbreaking. And what CAN you do? Especially if she doesn’t want to talk with you about what she’s going through.

    My daughter is 34 and I still feel like an investigator. She doesn’t talk to me very much (Self talk? All. The. Time.) so I have to read between the lines, I have to be sneaky by listening outside her apartment door (she lives in our daylight basement) to try to learn what’s bothering her. Like you, I don’t go through her phone or anything, just trying to figure out what is making her sad or angry… I hope Sophie begins to share her day with you soon!

  5. Sophie REALLY needs the NDSC Teen/Adult conference–it changed EVERYTHING for my son when he went to his first one and has only missed 2 in the 10 years since.
    It will be a game-changer if there’s still space for this year’s conference!

  6. I have a scene in my “still-in-the-works memoir about my son Steve eating lunch alone. Heartbreaking.

  7. I have a scene in my “still-in-the-works memoir about my son Steve eating lunch alone. Heartbreaking.

  8. My daughter is 33. I don’t think she has ever been happier. She doesn’t have the life I envisioned for her when she was younger, but she has the life she wants and loves. She engaged to a man with down syndrome that she went to toddler classes with, I love him and his family. She has friends she talks with every day. She has friends that care about her, without disabilities. She laughs every day. I have never seen anyone enjoy life like she does.

  9. My daughter is 33. I don’t think she has ever been happier. She doesn’t have the life I envisioned for her when she was younger, but she has the life she wants and loves. She engaged to a man with down syndrome that she went to toddler classes with, I love him and his family. She has friends she talks with every day. She has friends that care about her, without disabilities. She laughs every day. I have never seen anyone enjoy life like she does.

  10. Sophie’s right . it IS hard. .but so are turns for dancers, so are computers for me. So is life. She is wondrous and hard has made her the courageous soul she is . . but let’s not forget HARD has fueled every member of your dear family and that bravery, strength and resolve has sent a beam of knowing and brilliance into the world. xx

    None of us want hard . .she’s just honest enough to own it . .Bravo

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