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We can do better
During my daughter’s last hospital stay, I received a tube, a bottle and a few jars of luxury hand cream — lavender-, grapefruit- and musk-scented emollients, in fancy, flowery packaging.
It’s a thing. When people want to be supportive during a difficult time, they give you something that smells pretty. I knew about the casseroles, the lasagnas and the rotisserie chickens.
But this part was a surprise.
I appreciated the gesture, certainly. So many people have been kind to our family in ways that have made me feel both supported and struck with an overwhelming sense of gratitude. But I never thought I would be in this position — the position to attract such offerings.
I’m the mother of a child who was born with her own unique genetic map. That’s what we call it, her rare genetic difference.
Our girl, now 18 months, has a host of remarkable things to show for it — her grit, her giant, giddy smile, her boundless resilience. She has dance moves like you wouldn’t believe and, I swear, when she looks me in the eye, it’s like we were meant for each other.
My child has had to endure a lot in her little life. Surgeries and procedures, multi-week hospital stays, and so many ER visits that I’ve stopped counting.
When you’re on a first-name basis with the staff at the nearest children’s hospital, and the anesthesiologist recognizes you in the hall, well, that’s when the hand salve starts rolling in.
I have a lot of things I could worry about. My kid’s got high levels of fluid in her brain; she’s got two looming cysts stuck in there, too, and likely, an upcoming spinal surgery. She’s got low muscle tone and she’s living on a feeding tube.
Somehow, I’ve learned to live with all of that.
I’m not saying it’s easy. Often, I wish it were different. I work hard to accept — and at times, on the best of days, embrace — how our lives have changed.
And then, of course, there are the moments when I don’t feel any kind of acceptance at all, when I feel exhausted and alone.
More than her medical problems, what I’m most worried about right now is the kind of world that my daughter will grow up in. And my other child, too — my charming, charismatic 4-year-old son.
I want my children to grow up in a world where people are curious about exploring differences, not judgmental. Where justice, kindness and access for all are values that define everyday life. Where people who don’t agree with each other can have a civil conversation, face to face.
My daughter isn’t like other children. She’s on her own developmental path for things most of us take for granted, like walking and eating.
Her path boils down to this: We believe (and hope and pray) that she will do these things someday.
For now, we visit a lot of doctors and spent a lot of time on rehabilitative therapies to help get her there.
I just want her, like any other parents desperately want for their child, to be accepted and loved, to have a chance to make a contribution to this world.
When I take our daughter to pick up her brother at school, we often stop to play on the playground.
The other children see her tubes and they want to know more. They ask me about how it all works. One inquired, sweetly, without any lead-up: “So you have to carry around the tubes everywhere she goes, and follow her to make sure they don’t get pulled out?”
And in that comment from a preschooler making a fort alongside her friends, I heard empathy. I heard genuine interest and a desire for understanding.
During these tumultuous times, I think we could stand to dish out more of that for each other, those of us who are adults.
What I really want to say is this: We can do better.
Parents, grandparents, uncles and aunts, babysitters — heck —anyone who loves (or even likes) children.
Whatever our specific worries are when we try to fall asleep at night, whatever our individual problems may be, we’ve got something bigger than ourselves to rally for. We’ve got to rally to build a more compassionate world for the next generation — a world in which we can talk with each other.
When any of us choose ableism, racism, sexism, homophobia or religious-related bias, let’s hold each other accountable. Because our young people are listening to almost everything we say, everything around them. Even though they pretend not to be affected at all, they learn to talk as we are talking.
Sometimes when I hold my daughter, it feels like praying. Even when it’s 3 in the morning and I’m rocking her to sleep in the big brown chair, I feel connected to something greater than just the two of us as individuals.
I cannot believe I’m awake — and even more so that I’ve been up four times already and it’s still not morning. Then I feel her breathe, her long, thin body right against my body.
I look at her beautiful, one-of-a-kind face and, despite everything, I feel quite possibly the best thing in the world: Hope.
Emma Nadler lives in Minneapolis. She’s the author of Itty Bitty Yiddies, a blog at ittybittyyiddies.net.
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