It was an ordinary, sunny, Saturday morning when I crept downstairs into Lucia’s room to dismiss the night nurse. “It was a beautiful night,” one of Lucia’s nurses, Viktoriya, purred in her thick, Ukrainian accent, flashing a wide smile, gesturing toward Lucia, still sound asleep in her bed.
I smiled, too, and sighed in relief.
Lucia hadn’t been having “beautiful nights” as of late: for almost a year now, she’d been screaming and crying out in pain in the wee hours of the morning and as she was just waking up. The crying was so extreme that the nurses and even we, her parents, couldn’t comfort her. Finally, we’d figured out that she was experiencing muscle spasms and cramps because especially in her sleep, she can’t move purposefully, so a low dose of Valium had recently been providing some relief.
But with Viktoriya (who mind you was a doctor in Ukraine), Lucia often had “beautiful nights,” nights that Viktoriya never took credit for, but rather rejoiced in innocently, as one would a gift. And yet, we knew there was something special about Viktoriya, about the meticulousness of the care she gave, the extra knowledge she possessed about the medications Lucia was on and their interactions, even the way she played with Lucia, offering her therapy when she’d wake up early in the mornings.
As we neared the front door and we talked about the pulse oxygen machine–the pediatrician had asked to get the alarm rates to make sure Medicaid would approve its rental for the coming year–Viktoriya detailed with precision the attention she paid to Lucia’s heart rate. “You see, when her heart rate starts to climb, I can see she’s getting uncomfortable, so I do not wait for her to cry,” she said, “I turn her.” And she motioned. “I turn her from side to side all night and she never wake up,” she said cheerfully. “She sleep perfectly just like that.”
Even as I write these lines, I am in awe.
In awe of the devotion and care my daughter receives as not only she, but my husband and I all sleep through the night, all the while a nurse keeping watch, anticipating and aiding Lucia to find safety and comfort and rest. It’s just no small thing that in a world where life is so difficult for Lucia, where at night she faces seizures and breathing and pain, a nurse not only keeps watch for the big things, but guards her sleep, attentive to her every desire, a desire even to move.
As Viktoriya left that morning, I scribbled a post on Facebook, letting my little world know what she’d done and been doing for us, and why Medicaid has been such a boon, a comfort, a watchman for our Lucia and for our lives.
I did this before I knew Medicaid was about to come under threat yet again. I did this before I knew I’d begin losing sleep again not because of Lucia’s medical conditions but because of the care that may not be there in years, months, or weeks.
How I feel about Medicaid is how I feel about Viktoryia and so many of the nurses who have come into our lives–they are a gift. We can’t possibly pay for the healthcare that Lucia would need to live and that in itself is frightening and humbling. Yet the state and the federal government give us the support we need to live our lives as a thriving, joyful family, not just of 3, but of 9.
That’s about how many nurses, plus two parents, it currently takes to provide Lucia the round-the-clock care she needs to make it through the day. Or maybe it’s more like 16–that’s the addition of the five specialists that Lucia sees on a regular basis, her medical care that Medicaid, too, helps support. Or maybe it’s more like 20–that’s her therapists and her teacher at school, a special needs school where Medicaid helps supply equipment, her Medicaid-supplied nurse makes it possible to attend, and Lucia gets great education and therapy.
I could go on. I know the numbers are much higher still–it’s you, millions of people who pay taxes and the government, that help support families like ours, that make it possible for Viktoriya to play watchman at night so Lucia doesn’t seize uncontrollably, so she doesn’t wake up crying in pain, and so her parents don’t have to hold vigil night after night as they struggle to work and to care for her. It turns out, I’m not just in awe of Viktoriya, but the abundance we have received through Medicaid, which is in no small part thanks to all of you.
But today, I am also weary. Weary of the proposed cuts to Medicaid in this newest bill in the Senate, and weary of the plan to make savings from cutting people from healthcare who need it most.
Please join me in bombarding Congress with stories of gratefulness about children like Lucia and the gift of Medicaid by calling your Senators over the next few days. Please share our story and Viktoriya’s story. Please tell them that Medicaid is about people and long nights and “beautiful nights” and families like ours. Please tell them what Medicaid has done for us. And please tell them how thankful and in awe we are of the people who have provided for our daughter.
1 Out of the depths I cry to you, O Lord.
2 Lord, hear my voice!
Let your ears be attentive
to the voice of my supplications!
3 If you, O Lord, should mark iniquities,
Lord, who could stand?
4 But there is forgiveness with you,
so that you may be revered.
5 I wait for the Lord, my soul waits,
and in his word I hope;
6 my soul waits for the Lord
more than those who watch for the morning,
more than those who watch for the morning.
7 O Israel, hope in the Lord!
For with the Lord there is steadfast love,
and with him is great power to redeem.
8 It is he who will redeem Israel
from all its iniquities.