I can’t tell you how often these days my husband and I are brimming with joy as parents.
Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better. Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.
But a lot of things have also stayed the same.
Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018. Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions. Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined. Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.
In this season of thanks, we have so much to be thankful for.
And yet, I’d be lying if I told you that 2017 wasn’t anything but an incredibly trying year. In the midst of all of Lucia’s persistent health challenges, we’ve also faced major threats to her healthcare and provisions for people with disabilities all year long. Living life with this constant threat hurts more than the uncertainty we face with Lucia, because it’s complete manufactured and manmade.
And I can’t help but think about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition. They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest. And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.
So this week, the prospect of giving thanks when so many are facing the looming possibility of losing their healthcare, people who are poor and hungry will suffer because of the bill, and people with disabilities will lose benefits and supports because of it, seems downright trite and inhumane. I wonder if when we go to celebrate this week, we might practice yet another storied, American tradition–that of patriotic protest, dissent, and advocacy and urge those we love and those around our tables to give as we give thanks.
You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money. You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers. And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.
If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness. None of our journeys are typical, but that’s what makes this country so great. Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.
And from the bottom of my heart, for all your phone calls, prayers, and support,