Yo soy La Lay

adventures in family, faith, and Down syndrome

Sisters

on May 29, 2017

So Ellie’s newest pet name for Tessa is “you little Down syndrome girl.”

She says it in this high-pitched, baby talk voice and probably under different circumstances, I would think that it’s pretty cute.  I mean, not the nickname itself, but the fact that she has one for her, of course.

Cringe.

At just about six, Ellie is a voracious reader.  We often joke that we know that she’s going to be that kid in class who makes her teachers crazy because she flies through her assignments so that she can read, her book hidden on her lap under the desk.  She will try to read anything that she finds lying around the house – news articles, pregnancy books, a silly “how-to” guide for all kinds of household tasks… “Mom, you should really think about blue for your bedroom,” she’ll tell me.  Or, “Mom, we’re supposed to have a motion detector light.  What’s a motion detector light?  Do we have that?” 

I tell you this because in the back of pretty much every book about Down syndrome for siblings, there is a “topics for parents” section that she is now blasting through and suddenly, she has a lot of questions.  She understands more now that Tessa isn’t just like her peers.  As she interacts with others in school, as more cousins are born, as she meets more people in her big, beautiful world, Down Syndrome has become something that she wants to wrap her brain around.

There was first a phase where she found it fun to guess who in her life has Down syndrome and who doesn’t.  This was purely based on looks and what she had read about almond eyes, low-set ears, etc.  Now, as she is seeing other children in school who have speech delays or other cognitive challenges, her questions are more about why Susy “can’t talk right” because in her mind, only children with Down syndrome have this challenge, and Susy doesn’t have it.  To her, Down syndrome is something that is positive because it gets you things that other kids don’t get, like an aide for Karate class, or one-on-one time with therapist… or help from Mom and Dad and maybe less time-outs.

And then, because she points out all these inequities, as parents, we are left wondering if we are “leveling the playing field” for Tessa, or if we are letting her get away with it because maybe she doesn’t understand.  I always have to go back to asking myself, if she didn’t have Down syndrome, would we do this?  

Kids have such an interesting way of making us question so many pieces of life.

Yesterday, as I listened to them waking up over our newly-reinstalled baby monitor, Ellie was teaching Tessa about the difference between “cold like I need a blanket” and “cold like you are sick.”  She was trying to get Tessa to understand that she wasn’t feeling well, and patiently gave examples of a double meaning that would surely give any three-year-old trouble.  What made me smile is that they were just chattering, not playing, but just being sisters and talking as sisters do.  I am hopeful that maybe, just maybe, we are helping Ellie understand that Tessa is just Tessa, and that Ellie doesn’t have to be anything for her except a sister, to teach her about putting on make-up and navigating the school bus and to help her understand which foods in the cafeteria to avoid.  We continue to walk the delicate balance of teaching her to be kind, helpful, and compassionate, but not making her feel like she is tied to any particular job in her sister’s life.  We want her to feel comfortable talking about Down syndrome and how she feels about it, while still recognizing that Tessa is who she is regardless of the extra chromosome.

It’s hard, y’all!

When Ellie calls Tessa her “little Down syndrome girl,” I have taken to reminding her that there are lots of things about Tessa that we can use to describe her that are just as sweet, like her shiny hair or sparkling eyes.  We keep letting her ask her questions and explore this topic that has so much and yet, so little impact on our life.  And maybe, hopefully, she’ll grow up knowing that Tessa’s path is different, not less.  Hopefully. ❤ 

An oldie but goodie, this is my all-time favorite picture of the two of them…

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