During our first couple weeks in the Newborn Intensive Care Unit, when Elias weighed one pound and change, we met with the hospital social worker who signed us up for Medicaid and put us on the waiting list for a waiver for children with complex medical issues.
We didn't know if Elias would make it through the night, let alone live to be a thirteen-year-old kid who today is taking Japanese for his exploratory block at the Seward middle school and is participating in a fundraiser for his adaptive ski program.
Back then we just wanted him to breathe.
Medicaid has kept us out of a financial hole, a crater so deep we'd never fully climb out, as Elias's medical bills must be in the millions by now, if they didn't exceed this mark during his 94 days in the NICU.
I worry about state block grants and what this change will do to to Medicaid, especially here in Alaska, where the sick and injured often fly on a helicopter to the nearest hospital, where the cost of health care towers over that in the lower 48.
And its not just medical appointments and therapy visits that Medicaid helps cover, but home adaptions, supplies, and the much-needed respite families seek in order to care for children with complex needs, children who don't just play outside with a gaggle of friends when they're thirteen but sit alone at the table where they need help cutting up their food, putting on socks, kids who never express pain in words, only in bursts of frustration, unaware of their own strength.
Well, that's Elias anyways, every child's needs differ, and this is why its so important to empower their families to be their primary caregivers. Medicaid allows Elias to live with us, where he belongs, instead of being placed in an institution-- though he qualifies for this level of care.
I feel fortunate to live during a time when parents are believed to be the best and appropriate caregivers for children with disabilities, instead of being told its in the child and family's best interest for the son or daughter to be institutionalized. And then to be called a "refrigerator parent" and blamed for causing the disability in the first place through a lack of love.
Through some fault of our own. Believe me, I am an expert in self-blame, with a graduate degree in guilt, I don't need white-robed professionals pointing fingers at me as well. I have ten deft digits of my own.
Thankfully, as a society, we have travelled far in our respect for the dignity and capabilities of children born with challenges.
We can't go backwards.
And yet the cutting of Medicaid, the school voucher bill, and the proliferation of swastikas, tells me that at least some people in our country would like to return to a time when children like Elias did not sit next to their children in school, did not, perhaps, make it home from their hospital stay after being born four months too soon.
Expendable retards. Not fully human. Freaks. Others. Less than...
This month's edition of The Sun magazine has an eye-opening interview with Steve Silberman, author of the book NeuroTribes:The Legacy of Autism and the Future of Neurodiversity.
When I read the following paragraph, it was me who struggled to breath:
"Prior to the Holocaust, the Nazis launched a secret extermination program later called Aktion T4, which aimed to eradicate children with autism, schizophrenia, cleft palates, cerebral palsy, Down syndrome, and so on. They converted the medical infrastructure of Germany and Austria into an industry of death. Clinicians were required to report patients with hereditary disabilities, who were then taken to special wards and given fatal injections, or starved to death, or left outside during winter. The parents would get a slip explaining their child had died of "pneumonia"--along with a bill for the burial."
"Starved to death." "Left outside during winter." "A bill for the burial." I stopped and read the paragraph again, searing the images born of letters to my brain, as tears gathered on the edges of my eyes.
I knew people with disabilities were targeted by the Nazis, along with GLBTQ and Jewish people. But there is a difference between knowing abstractly and reading concrete words that show the horror.
The first nightmares I remember vividly from my childhood came after watching a black and white movie about the Holocaust. The book I remember most clearly from high school is Elie Wiesel's Night.
When I watched and read these stories of human cruelty it seemed so long ago. A part of history we could never possibly return to as a civilization.
Not us, especially not here in America, not "the land of the free".
Oh, but my country is as fallible as the rest and fully culpable when it comes to the oppression of others.
And now I know it will take more than a caring village to keep this darkness from returning, but an active army of compassionate citizens who stay awake despite the sleeping pills called "Too Busy", "I Prefer Pictures of Kittens", "Overwhelmed", "1,000 Channels with Endless Programming" "What Can One Person Do?", all those mind-numbing medicines that tempt us to give up the fight before we even begin.
Our words and actions matter. Everyone of us.
And so do children like Elias.