Thanks to so many of you who called, wrote letters, and spoke to your members of Congress, I feel like I can breathe again for the first time in weeks. I feel hope and lightness and strength, and I can’t thank you enough!
But most of all, I feel like the outpouring of support reminds me that while I can’t take it for granted and the fight to protect people with disabilities, the poor, the elderly, and the most vulnerable in our country is far from over, I hear that the voices who value those lives in this country have gotten louder, more expressive, and more proud. A few days ago, the burden that I felt to make my daughter’s story and her value known felt very singular and heavy. But what’s so sweet about hope is that burdens are lifted when responsibility and love and care become shared.
Thank you so much for sharing our burden, but most of all, thank you for realizing that Lucia’s life has never been and doesn’t deserve to present a burden to her or to us or to any family who just wants their child to grow and thrive. Let’s keep fighting so that we can all keep growing by living in a society that values so many different kinds of people and deems them all worthy of health, education, life, and love.
Onward, my friends. And thank you for renewing my hope!
It hit me in the midst of another inglorious diaper change, the consequence of some digestive discomfort following Lucia’s recent surgery, on a late Saturday afternoon on which we, like nearly everyone else on the east coast, were holed up riding out the incessant blizzard. We’d rushed home from the hospital on Friday night, eager to get ahead of the storm and heal together only to find that the new feeds were irritating Lucia’s bowels, she was still achey from her incisions, and on account of the snow, we were stranded without nursing assistance. As I washed my hands and looked rather grumpily into the mirror, I had one of those flickering thoughts laden with resentment, wondering what it was exactly that I’d been doing all weekend.
When I began spending time with foster mothers in China I found that if they didn’t live in farming villages or shacks on the outskirts of the city, they lived in dilapidated six or seven story walkups–big, domineering concrete shells with no elevators. For slight elderly women (the people of Guangxi are extremely small-boned) whose knees had long grown tired from years of hard work and whose backs were already curved, such daily climbs were challenging enough. But when I first watched one of these women sling a foster daughter of about eight who couldn’t walk to her back to take the stairs, I gasped. Observing these women climb six or seven flights of stairs with such enormous burdens strapped to their backs over and over, I admit that I often wondered, what are they doing? Why are they doing this day after day, week after week, year after year?
Like any good Westerner, obsessed with efficiency, ingenuity, and supervising, I also marveled at the ridiculousness of it all. It rather pained me not necessarily that the sacrifice was so grand but so unnecessary, so overwrought, and that it had become so mundane and accepted. Many of the foster mothers had husbands and other children who presumably could have stayed home with their immobile foster children, yet they chose to carry them up and down the stairs.
Years later as I barely sweat to change yet another disposable diaper in my warm home, I’m sure I will never quite comprehend the backbreaking work that those foster mothers did, but I think I know now why they did it, and why they continued to do it.
Because it matters.
In doing that daily work of caring for their children with special needs–climbing, bathing, and feeding–they were doing work that matters. And I think that care mattered not only to the children who wouldn’t have been able to venture outside, have a home, or even a mother without them, but also to the foster mothers themselves. I remember many times catching a glimpse of a seemingly impossible smile upon their faces, a laugh upon their lips, or even a lightness to their steps as they climbed and climbed those stairs. The smiles weren’t always present by any means: caring is hard work, and I don’t want to diminish it as such, but I think the care that foster mothers gave their children mattered, because they did it not to their children, but with them.
I think there’s an emphasis on making the time we have in this life, especially in this country, count. There’s an emphasis on being efficient, responsible, and wise with the way we spend our time. I even hear people talking about doing things because they’re wanting to “make memories” for their children for the future. And I think there’s a lot of good in responsibility, wisdom, and intention, but I gulp a bit when I think how viciously and flippantly I began to judge those matter-ful moments spent together this past weekend. It will always be easy to assume that things can be done better and time certainly is a scarce resource. But I there’s something upended about judging some memories wanting and others foreordained, in dismissing some work as mundane and inefficient, and failing to see what matters most.
What did I do all weekend? I rose when my baby cried, I tried to ease her pain and comfort her, I wiped her bottom and changed her pants too many times to count, I snuggled with her by the fire, I worried about her, and I doubted myself for a moment. But today as I threw her in the stroller to venture out into the white, white snow, I thought of those long treks up and down the stairs in China, and I smiled.
It’s work that matters: it matters to our kids and it matters to me, too.