Waiting Game

May the odds be ever in your favor

Last week, I sent in our “Annual Report of Guardian” to update our county’s Superior Court on our adult son’s physical and mental health and his need for continued guardianship. We must demonstrate that we’re doing our jobs to ensure he has clothing, food, shelter, healthcare, educational and social activities—that he is well cared for as our “ward.”

There’s not a space on the form to tell them that our son, who will turn 26 this week, has developed a thrilling new skill. In response to our late afternoon question, “Where did you go for lunch?” he can almost always give us a one-word verbal response, something he’s never been able to do before. When he names the burger or pizza joint where he went with his speech therapist, it’s a real treat for us.

My report that he is in good health and enjoying his programs doesn’t tell the court how on some mornings he is downright giddy to see a favorite activity on his daily schedule. He will ask repeatedly to go, no matter what the clock says.

We are practicing patience and “appropriate” waiting. I’ve pulled out visual timers, alarms, written schedules, calendars, and many lessons on “not yet” vs. “almost” vs. “now.”

I’m grateful that my son has activities that he enjoys and that we see his smile more often than his stomps, because the outside world feels awful right now. I’m not happy with the laws they are breaking and the people they are taking and the wars they are making. The greed of those in power overshadows the compassion I know exists within our country, too.

A documentary on caregiving is streaming free on PBS right now. It is touching and painful and infuriating. The film includes superb profiles of families across the country, showing what caregiving looks like in American households, woven with key historical points in our country’s debate over the societal responsibility for care of our children, our elderly, our veterans, our disabled. In the last century, we have made small gains and had frustrating setbacks.

Although this documentary was filmed prior to our most recent election, the advocacy groups here were hugely active in the last campaign and are in the fight now to help save Medicaid against the latest onslaught. Care, as they say, can’t wait.

When we became our son’s guardians, the judge told us it was our responsibility to get and retain all the services our son is entitled to for his health and well-being. He meant keeping up with all the paperwork, doctor’s visits, meetings, strict financial requirements and endless eligibility reviews from multiple federal and state agencies. I do that.

He may not have meant creating signs, attending rallies, signing petitions, writing postcards and making calls to try to prevent the decimation of those services. But I’m doing that, too.

I am sure that my Republican congressman is tired of hearing from me, but I can’t stop writing emails to tell him that his claim that they are “fixing” Medicaid to protect the most vulnerable is the real fraud, that leaving it to the states to decide who is more “worthy” of the pennies the feds will toss them is the real abuse, and that adding more hope-you-fail paperwork to a system which already asks us to prove over and over that our loved ones qualify for never fully funded services is the real waste.

But I am not just mad that this big brutal bill will hurt families like ours as healthcare agencies dry up for lack of funds. I am not just furious to be living inside a Hunger Games spectacle where the rich sip champagne while the poor, elderly, immigrant and disabled spar in a death match to win the title of “most vulnerable.”

I am mad and furiously recommitted to my belief that everyone—in this country and abroad—is worthy of basic healthcare, shelter, and food. It should be a no-brainer that healthy, fed, housed communities make for a more stable world.

It is hard to be patient while our leaders figure out their responsibilities to all of us. I am not making any promises for “appropriate” waiting.

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Links & Info

Democrats on the Joint Economic Committee argue that 16 million Americans will lose healthcare coverage over the next 10 years. Click here for state-by-state estimates, and numbers for each congressional district. In Arizona, 342,564 of us may lose coverage.

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Here’s a fun report from The Institute for Macroeconomic & Policy Analysis at American University making the case that this bill “would transfer income from the poorest working families, who would see their incomes decrease by 5% by 2034, to the wealthiest households, who would see their incomes rise by over 2%.”

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Heather Cox Richardson in her letter last night, had this reminder about what happened in 1890 after the McKinley Tariff passed, which favored the rich while taking from the poor:

Members of both parties listened to the developing anger over economic injustice and shared the fears of Alliance members that democracy was collapsing under an oligarchy of industrialists.

Their insistence that a democratic government should not favor any specific sector of society but should work for the good of all resonated with voters across parties, and lawmakers, especially younger ones eager to build a following, listened.

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Please contact your Senators (here) and congresspeople (here) this week.

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Don’t miss Caregiving on PBS.org.

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In Other News…

My husband has art pieces showing in two galleries in Phoenix this summer: First Studio Gallery’s “A Show of Resistance” (the online show is here!) and Found:RE Contemporary’s “Hot American Summer.” If you’re joining us in the heat, take a chance to step into the a/c and enjoy these wonderful shows. We also had fun following an Instagram trend to showcase his newest piece, a tribute to Cesar Chavez:

lavoieart

A post shared by @lavoieart

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You can also find me over at

Atticus House of Quirk

, a newsletter I’m writing for my local indie bookshop Atticus Books & Music. A great place for much needed distraction! Our last newsletter was focused on music and remembering Sly Stone and Brian Wilson. Come check it out!

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