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Special Needs Siblings: Great Expectations


My girls are twenty months apart. " O" the big sister, is almost a teen- she wears wedge flip-flops, designs elaborate doodle drawings and can master most online games; All enviable accomplishments to her little sister, Zoe, who does her best to follow in her sister's  footsteps. Where " O" can run , Zoe uses her walker. When the girls do "" Just Dance 4" on the Wii, Zoe has some pretty mean moves that are meant to model the spins and bounces her sister effortlessly exerts. The girls share the same medical diagnosis, however in our house, O is the " typical " kid ,and my expectations for her are great, maybe maybe even sometimes..unrealistic. 

Olivia was about 8, when we started talking in detail about Zoe's diagnosis. It was then that I realized through O's little girl eyes, that she was expecting Zoe to get better. The medicines, the therapy appointments, even doctor's visits.. were all meant to make Zoe better, help her learn to walk and speak clearly. O was just waiting for it to happen, and waiting and waiting, until one day when she asked me if it ever would. And I told O what I knew to be our truth,. I watched her eyes fill with tears and waited for her words of grief, and instead heard her little girl voice ask" Does Zoe know, Mom?" She was protective of her little sister, trying to imagine if Zoe knew this, if Zoe, with her great  love for life and easy laugh, knew this to be her future or if there was more hurt to come.

 And since that day O has learned much more. She has learned about the science of the brain, first at school and then at our kitchen table. As I drew pictures on her school worksheet, illustrating what was different about Zoe's brain, and why it didn't work like hers. She has learned about seizures and processing, as I have tried to educate O about Zoe's  fatigue, inability to tolerate Radio Disney at high decibels and why Zoe will just melt down sometimes , unable to rationalize when she can't have her way. 

There was the time we went to the mall , and as I searched for a parking place, O grumbled impatiently " Why do we have to take Zoe's power wheelchair? " and I turned to her and simply said " Don't you think that Zoe would rather walk? "

 O is also learning to advocate, as she sees and hears me do this for Zoe. As I share my fury, over the things people do, the way kids stare, the note a stranger left on our car door that caused me to swear out loud, and then cry silently as I drove home. 

O understands Zoe is fragile, and she is learning more than what accommodations Zoe needs. She is learning firsthand, about empathy, and respect and how much you can accomplish with willpower and determination, despite the obstacles you may face. 

Little sisters can be annoying, I get that. I run more interference for that , than anything else. O probably deserves a break in that department.

The other day, O had some friends coming over and I reminded her, as I do sometimes at the store, or when we are at school events  " Make sure you treat Zoe respectfully. If she is annoying you, tell me. Your friends will follow your example, and treat Zoe, like you treat Zoe"

" I know Mom, " O said, sighing in that almost an eyeroll, teenage kind of way. 

" I get it.." she said. 

I looked at her raising my eyebrows a bit in disapproval, a bit in question, as O went on..

" I don't want them to just see a kid whose in a walker, I want them to see my sister.. Zoe." 

So maybe sometimes I do expect a lot out of O, but you know what? 

She really does  " get it" .