Saturday, 21 March 2015

The lessons she teaches: on time #WDSD15

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I'm writing this post in honour of World Down Syndrome Day. Last year, when I wrote this I hadn't even met  my daughter yet, but I was full of excitement and anticipation for what was to come, all the challenges and achievements alike.

Almost one year in, I feel a bit more able to speak to those challenges and achievements, a bit more grounded in our reality, which for the most part is happily mundane. In truth, I don't really remember what made us cry, exactly what it was we feared when we first leaned of Girl Wonder's extra chromosome, what feels like a lifetime ago now.

I knew to expect that she would reach some or most milestones later than typical children, which has been true to an extent; she rolled over well before her typical peers, for example, but at nearly eleven months, is still working on sitting unassisted. She doesn't just reach finite milestones later, but also spends longer in each developmental stage. In the mainstream paradigm of human development that asks us to check off achievements as mere waystations en route to some ill-defined destination of having achieved <what, exactly? maturity? adult status? full personhood?> my daughter is a sojourner who takes her time breathing in the scenery. I have an abiding respect for this way of being; as a frequent traveller without a map, getting lost and chancing upon happy discoveries, I've relished exploring many a cul-de-sac in my own time.

Still, sometimes it's hard not to compare her to the seemingly arbitrary, standardized developmental guidelines or to other children, even other children with Down syndrome, though this is mostly as a guage by which we measure our own parenting abilities: as I imagine all parents do, we sometimes wonder if we are doing right by her, if we are doing enough. Girl Wonder is ahead of the curve with some abilities, typically achieving with others, and well behind with some too. Are we missing some stimulation, some therapeutic intervention that could give her that competitive edge?

And then I look at her.

Yes, her achievements often come to her slowly, and we can only watch. But really, this isn't about us, our wishes or choices; this is her journey. Whether it's thanks to an extra chromosome or simply to the mysteries of her own personality, she takes her time. With gusto and exuberance, but slowly. Like a delicate flower gently blossoming to reveal the stunning beauty that lies within its hidden petals. Like a treasured secret shyly told, making the confidant feel special for the chance to bear witness. Like a marvellous story, the telling of which makes you long to slow time so you can savour, for just a bit more, being lost in its pages, before finally reaching the exciting and satisfying denouement.

Time takes on altogether unfamiliar qualities when you become a parent to any child (or so I assume it's the same for everyone). Precious months seem fleeting, while the recent, pre-baby past seems an unfathomable eternity ago. Truly, given the twinges I feel at its passing, I am grateful for time to slow down so that we can linger, even just for a while.

Looking back, our journey to parenthood was not the magical, irreverent, joy-filled one I might have hoped for. Everything was counted out in often soul-crushing increments: how many months of ttc, progesterone levels and follicle counts and days-post-ovulation. Then a pregnancy marked, week by week, by measurements and numbers not quite this side of 'normal'. Even once she arrived, during those early months in hospital, we couldn't escape our existence, our love, our tragedy being parsed out in numerical values: her incremental weight gain; how much milk she would tolerate through her feed tube; how much aspirate we removed with each feed; how much breastmilk I managed to express; the weight of her diapers dry and after she peed; then when she switched to the actual breast, for how long she fed each time, according to a strictly measured three hourly schedule. It feels so good, so peaceful, so right not to be fixating on the numbers for once. She is a daily reminder of how meaningless they are.


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If Girl Wonder experiences many things at a delay, her capacity for human connection is not one of them. She reaches out to people, graciously, gaining admirers wherever she goes. She seems to make it a mission to target the most miserable in the crowd. While waiting in line at the supermarket, or on the tram, I'll see her beaming at a point in the middle distance, and glancing over my shoulder to look for what it is she's so taken with, I'll find her making eyes at the grumpiest of old men, at the sullen, awkward teenager, the tear-streaked child, the desolate homeless person. She sees them all. She reaches them. I have yet to find any who can steel themselves against her charms.

At less than a year of age, my daughter is wonderfully, authentically true to who she is. Girl Wonder is impervious to what George Estreich, writing about his own experiences raising a daughter with Down syndrome, calls society's 'incessant, nagging whisper to advance, advance'.

At times I envy her that ability. But always, I am so grateful to be her mother, getting these opportunities to learn the lessons she teaches.



The US National Down Syndrome Congress is calling on all of us to celebrate World Down Syndrome Day by practicing random acts of kindness in honour of those we know and love who carry an extra 21st chromosome. If you'd care to participate and share your random act of kindness here, Girl Wonder will be happy to pay it forward. Happy WDSD, Happy first-day-of-spring!

13 comments:

  1. This is the most beautiful thing I've read in a long time Sadie. Congratulations to you and your little girl for being such a wonderful team. I also envy many of your daughter's qualities to soak in the moments and reach out to the grumpiest of old men. Beautiful pictures too! She is gorgeous.

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  2. Ah, I love these photos! I definitely see her exuberance. It sounds like she's quite a remarkable little person. As someone who also likes to take her time, I wish there were more spaces in the world for slowing down, but it seems like wherever Girl Wonder is, everyone around her slows down too, and that is a special gift.

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  3. This is so lovely, and a reminder that the human journey is really about learning how to be human together. Thanks.

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  4. This post brings so many thoughts and inner reflections. There's a lot here (all of it beautiful, btw).

    One thing that really struck me is this realization of hitting milestones in one'a own time. We as a global community are obsessed with milestones and the rat-race for completing them quickly. You're absolutely right, though, that by hurrying through them we also fail to enjoy them. Thank you for this amazing insight.

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    1. Definitely a gem of a post. Glad you picked it for your Creme de la Creme selection.

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  5. Beautiful photos!!!

    I've been thinking a lot lately that I have a lot to learn from Paloma. How wonderful your little sweetie sounds, I know you will both enjoy learning from each other over the years :-)

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  6. Beautiful photos!!!

    I've been thinking a lot lately that I have a lot to learn from Paloma. How wonderful your little sweetie sounds, I know you will both enjoy learning from each other over the years :-)

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  7. You are so right about the timelines. I see the same in our extended family, sadly - my in-laws keep commenting how SB's cousin (with T21) hasn't reached this or that milestone. As if that was what life was all about. I think it especially irks me as our twins will clearly never reach any milestones or just get to cuddle with their parents.
    For the random acts of kindness - does it count if I get up with SB at 7:30 and let her dad sleep in for 3 hours? ;)

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  8. What a happy smile! I am so glad to hear you are all doing well, and Girl Wonder is busy loving the world. :)

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  9. Beautifully written post. Just beautiful.

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  10. I haven't read your blog since you password protected it for the first time. I just thought it was out of my reach. I was so happy to discover, earlier this week, that there is more of your story to read. Your daughter seems absolutely gorgeous and I am so happy for you to have her in your life. And for her to have you as her Mom <3

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  11. Girl Wonder. What a lovely post. I kept thinking of this poem and want to share it with you. Something I've tucked away for myself that reminds me of all the small goodness that keeps those of us who might fall from the earth unnoticed, firmly here. It's by Dorianne Laux and is called For the Sake of Strangers. http://www.ayearofbeinghere.com/2013/08/dorianne-laux-for-sake-of-strangers.html

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  12. Really lovely post full of love and gratitude. (Here from Mel's Creme post.)

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