Parenting, Disability and Adjusting Expectations


The doctor came in, turned off the television, unceremoniously dropped the remote control on my bed and proceeded to change the course I thought my life was taking.  The course I thought my daughter’s life, all 60 minutes of it at that point, was taking.

Blackbird singing in the dead of night… 

I’ve told this story here before and will likely tell it again.  A surprise diagnosis on an otherwise amazing day.  Her birthday.  My birthday.  “I’m not positive but I think she has Down syndrome.”

Take these broken wings and learn to fly…

She will be different.  She will have challenges.  Quit your job.  You’ll spend the next 20+ years in different therapies with her.  She ‘ll walk late.  She may not talk.  She might not have friends.  She might never read. She’ll never drive, get a real degree, go to college or get married.  She’ll never have kids of her own.  Everything will be harder.  She’ll depend on you for the rest of your life.  Or her life – if she’s lucky.

All my life…

I refused to believe it.

There was absolutely some adjustment of my expectations for her the day she was born… I raised the hell out of them.

She may not lead exactly the life I’d imagined.  She may not do all the things I’d dreamed for her before she was born… but that’s got nothing to do with how many chromosomes she has.  It’s because she’s her own person.

Or maybe she will.  I’d imagined she’d have drive, ambition, a fierce love for life, and work hard for all she accomplishes.

She has all of those – moreso than anyone I know.

I work hard at my job, probably putting in too much effort and too many hours for the level job I have. Some parts of it come easy and some do not.  I’ve got little work/life balance and am constantly exhausted.  I’m lucky to have lots of support and friends who don’t mind when I whine.  (And wine.)

She works a hundred times harder.  On stuff that’s so much harder (but that most of us take for granted.) Picking up new language, working on her motor skills,  beginning to read and write, learning all the things 5-year olds need to know.  NONE of it comes easy.  She works hard to get everything she’s got.  Over and over and over …and over and over… Just when you’re about to give up, she’s got it.  She’s got NO work/life balance – she gets no break.  Everything’s harder for her.  She’s lucky to have lots of support everywhere she goes to help her succeed.  She whines a lot (but because that’s part of being 5.)  And she does it all without wine.  🙂

I have a feeling as she grows, her expectations for herself will be even higher than mine.

You were only waiting for this moment to arise.

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