Friday, October 28, 2016


I talk about the weight of Down syndrome in many ways, but that word can be easily misconstrued. Sometimes weight goes unnoticed. Sometimes it's just the extra stuff in your pockets that you don't notice carrying around. A long time ago I vowed to make my posts as honest as possible so that readers struggling would feel the comfort in company that I have felt from other honest blogs. I know that sometimes comes across like it's lots of complaints about all that comes with Ruby's diagnoses.

So I need to set the record straight; even when I feel like I'm so far behind on all of the therapy stuff I should be doing in addition to what we do, and all of the cognitive stuff I'm missing, and all of the skills I'm forgetting to work on daily, I don't necessarily wish away Down syndrome.
Because, here's the thing, I don't think about it every day...some days it is just a little bit of extra weight in my mommy backpack. Sometimes I even go weeks without thinking about it (not during the school year). And I can't imagine where Ruby ends and it begins. It's part of what makes her her. And her spirit is so amazing, so kind and gentle and compassionate. She runs to me and hugs my neck when I return from the store. She waves and joyfully calls "Byeee!" when Lehr leaves. She calls out "E-ii?" and "Axxxx" every morning when she and I leave her room, searching for her siblings. Ruby doesn't know a stranger; she seeks a connection with everyone she encounters. She spends so much time creating meals in her play kitchen, and tending to her babies' needs, and reading books on the stairs. And if someone falls at the playground and cries, she says "boo?" (as in 'boo-boo') and rubs my arm, asking if she can go comfort them. How much of that would be present if she didn't have Down syndrome?

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