Day 4 – Freeze
Day 5 – Build
Day 5 – Husky
It’s two day before Thing1’s graduation. I’m on hold with the pharmacy for the third time this week trying to find out what’s happened with the most expensive of his five prescriptions. The insurance company won’t approve an increased dosage.
I’m scrolling through Facebook while I wait, stopping to like a friend’s post about a daughter’s scholarships or add a frowny-face to a post about a shelter dog on ‘death row’. I’m thinking about Plan B and C, including a three hour drive to Montreal to buy the temperature-controlled drug there.
The hold music is still playing as I pause at a picture of a crying toddler. I click on it and open the article.
The boy in the article has been recently separated from his immigrant mother. The article doesn’t mention if they entered the US illegally or were seeking asylum, only that he is traumatized and that his mother is now incarcerated several states away. I break a strict self-imposed rule and scroll to the comments below the article. There is outrage at the child’s situation. There is also indifference and even smug vitriol cast at the mother and, by extension at the child on whom our government is visiting this psychological trauma, for his mother’s ‘sin’, a misdemeanor at worst, of crossing the border.
The pharmacy customer service rep returns and pulls me back to my current battle, which suddenly seems almost insignificant. I harden my heart and head and click the back button, for now forgetting the child and the hundreds like him.
“I’m sorry, Ma’am,” she says, her voice almost robotic. “The insurance company has denied the claim again.”
“Well can you at least send out the original prescription?” I ask. “He’s getting way behind now.”
“I’m sorry, Ma’am,” she says again. “The old one was canceled with the new one. We’ve sent it back to the hospital to reauthorize.”
I want to ask her if she worries about job security if medical marijuana – a derivative of which we are on now wholly dependent to stop my firstborn’s internal bleeding – ever gains real traction. Instead I thank her for nothing, knowing I’m being rude for no good reason and with no expectation of an improved result. I call the hospital as soon as I hang up.
The nurses – there’s a special place in heaven for them – are already faxing and calling and liasoning between the doctors and the ‘experts’ at the insurance company (there’s a special place for them too). The nurses inform me that the insurance company’s chief pharmacist denied the new dose again, and they are appealing the denial a second time.
By Friday afternoon, company is due to arrive for Thing1’s graduation. I finish most of the cleaning and sit down to call the hospital before the weekend starts. I sit on hold, thumbing through the Facebook feed on my phone again, smiling in spite of my frustration. Images of kids smiling at parties and beaming parents flood my feed. I know they have their worries too, but, for a moment, I feel like I’m looking through a window at another world.
Stories of children being separated from parents also appear. I don’t click on the articles; I’ve just heard their stories on the radio. A father, separated from his young son, has killed himself. Mothers in detention are being told they may never see their children again. Today, knowing I can do nothing, I choose to be blind.
The nurse picks up and tells me the insurance company is still stalling. My son is now over a week behind on the main medication he needs to know will work before he makes too many plans for fall.
Saturday I tune out, focusing only on our small family celebration. At noon, our firstborn, my baby crosses the great divide from high school to a world that expects something of him. It is a huge step, and I constantly think how fortunate we are to have been able to travel toward and cross over that divide with him. Now, increasingly, he will travel independently.
Once, I thought this part of the journey would be like ripping a band-aid off of an unshaved leg.
Before Thing1 was born, I did not want kids. I was a wretched sinner. I had fornicated. I had lied — to people I hated, people I loved, to myself constantly. I had been guilty of almost every deadly sin. I was selfish. I was the worst candidate for a potential parent.
Somehow the miracle of my son happened. It would trite to say that he saved me, and he didn’t. He instead brought out a best part of me that I didn’t know existed so that I could be there to save him if the need ever arose.
When he was first born, in my dreams, the need always arose. Shortly before I went back to work my dreams became colorful scenarios of someone pointing to my past sins. A judgmental family member or actual judge would tear him from my unfit arms, a rhythmic, colicky cry providing the nightmare’s soundtrack.
Initially, I thought these dreams were more selfishness — the fear of losing the one good thing I had ever been a part of making. Eventually, I began to see my anxieties about losing my child were really about the fear that my earlier sins, in the form of karma, delayed ‘justice’, or just incompetent mothering might threaten his foundation, that the sins of his mother would be visited on him.
Tuesday is Thing2’s last day of school. Our older son’s case is still under appeal. The three of us decide to go to lunch rather than wait by the phone. It’s a perfect Vermont summer day until we get back to the mailbox where we discover the first denial letters, signed by the insurance company’s chief pharmacy officer.
I call the hospital for a status report. As I wait on hold, I google the pharmacy officer, a woman I discover. Knowing it’s psychotic, I get on Facebook, stalking the woman who’s denied my child’s prescription. I find her profile easily, discovering a professional portrait and a few snapshots of her with a little girl, maybe her daughter.
I want to message her, to ask her what kind of mother can look at my seventeen-year-old’s charts and deny his chance at health. How can she be so blind to his condition?
The nurse returns and informs me that the doctors have conferred with the insurer for yet another review. We’ll know more Wednesday morning.
Wednesday after lunch I start my daily calls. Our son is anxious to go back to work. Three weeks without his medication, however, are causing a backslide, despite the cannabis oil on which we’ve pinned too much hope.
But I still have hope. I have a Plan B and C through Z if needed, and Thing1 knows it. That knowledge is letting both of us see his future through an optimistic lens.
I keep Facebook open for a few more minutes after I hang up the phone. Graduation photos still appear in the feed. So do more articles about children being torn from their families in the name of national security.
I click on a few, avoiding the comments, focusing on the families, on the children. I mull over a new Plan A, then Plan B to help safeguard those futures. They are not my children anymore than my son is the pharmacy officer’s child, but they are someone’s children. I still don’t know exactly how to help, anymore than I know if we’ll win our second appeal, but today, as I wait, I refuse to be blind.
The concert program revealed that the middle and high school bands would also be performing. It’s a small school system, so I was still surprised by the increasingly packed house. We’ve been to a lot of recitals and school concerts over the years, so I thought I knew what to expect.
I knew nothing.
The high school band played first. The elementary and middle schools bands sat in the first row of seats waiting their turn. Mr. Neeson, the band instructor, introduced the piece, a march that the high schoolers will also be performing at the Memorial Day parade in five days. He then called for and got a B-flat from the band before them their cue.
The first notes marched perfectly in unison, echoing through the tiny auditorium and daring the audience not to clap. The band, culled from all grades of the high school, handled changes in rhythm and key, and the Big Guy and I had to remind ourselves that we were listening to kids who weren’t old enough to vote carry on a fairly complex musical conversation.
They segued to a jazzier number, a ‘jam’, we were told, that was composed for the concert. The Big Guy and I gave each other the super-impressed look. Our jaws dropped as the students got up from their places and switched instruments.
“I don’t make each kid solo for a performance.” Mr Neeson turned around to talk to the parents for a moment. “I do require they all know how to improvise, to listen to and play with each other.” Then the music started again.
There are fewer than 400 kids in our entire school system and, from the outside, it may seem fairly homogenous. The reality is that our school sees multi-generation Vermonters and transplanted flat-landers, Trump fans, Bernie-or-busters, and everyone in between. There are kids who get new iPhones every year and kids who may get their only meal of the day at school.
There was no way to tell if the pianist was a liberal or the drummer is a libertarian. The only thing the audience knew for certain was that these kids had learned how to change their perspectives, see new points of view and express their individuality, creating rich, beautiful music instead of just noise.
More than once during the concert, the Big Guy and I told each other that Thing2 needs to be in band again. Thing2’s creative spark burns hot enough that he may very well propel himself into a creative life when he’s grown up — with or without a school program. The performances, however, melded into a beautiful example of how arts in the schools are about so much more than vocation or even avocation. We knew Thing2 loved band practice, but it was only when we saw him and his friends working together to make something wonderful, that we realized the music program was teaching him as much about life as it is theory and even creativity.
The high school band finished, and Thing2’s band took the stage. Mr. Neeson turned to the parents again.
“So how many of you are Beatles fans?” he asked. Every hand in the audience went up. He asked if we knew the chorus to the first song on the album Abbey Road and then enlisted us as backup singers.
The band had no singer, but as the first drum roll completed, I saw a few parents mouthing, “Here come old flat-top”. My eyes were damp as the next two lines reverberated, and by the time the band was playing “One thing I can tell you is you got to be free,” every parent in the room was ready to sing out,
“Come together, Right NOW!” And really mean it.
Whether you think it’s allegory or history, you’ve heard the one about Adam and Eve eating that apple from the Tree of the Knowledge of Good and Evil.
For years, I’ve felt like the bulk of the knowledge I gained has been that of the evil humanity commits against itself and against its only known livable habitat. We turn a blind eye to bad behavior by trusted people. We cluck our tongues at the latest mass shooting and then wrap ourselves in our cocoons until the next horror appears in our social media feeds.
And I’ve been guilty.
I’m guilty because I let fear of that evil, for me spawned in the aftermath of a crime, keep me mummified. I work at home because I’ve been afraid of the world. I’ve tried to keep my kids safe on a mountain, hidden from the world and life.
That fear has been shrinking over the last few years. As I’ve rediscovered my art, I’ve rediscovered the better things about humanity. I’ve seen my son stand up for someone who couldn’t stand up for themselves. I’ve seen people expend enormous energy raising money to help people they barely know.
And last summer I had a chance to pay it forward a little.
I was raising money to buy art supplies for children who were refugees or in foster care. Then a friend who had helped spread the word to raise money for kits for almost 100 children asked if I would lead a drawing workshop for the children. I said yes immediately, even though the only thing I’d ever taught anyone to do is wash their hands after using the potty.
The afternoon started with 15 boys assuring me they couldn’t draw. I know everyone can draw so I started them on a free drawing exercise I had learned.
It took less than 30 minutes for the boys to kill their inner critics and start experimenting.
As they began drawing from their hearts, we saw abstract trees, scenes of and an occasional portrait emerge. We saw art doing exactly what it was supposed to do – open the door to healing.
That workshop was a gift.
I got home and started investigating paths to becoming a teacher, something I’d just been considering for the last year or so.
I neglected the blog through the months of researching certification options and reconfiguring my schedule. The drawing just about stopped.
The education, however, was just beginning.
My own history with mental illness, as well as the experiences of friends who were sometimes at the margins of school society, made special education seem like a good place to make a difference. I got a second experience-building job at an elementary school, and, as I felt like I was starting to be a small part of a small solution, my knowledge of good started to grow.
I’m breathing a little life support into my blog this afternoon, but the reality is that as I watch kids learning to accept others who are not like them and have the chance to give support to kids who might be having a hard time with the business of growing up, my creativity is thriving.
All creativity isn’t an expression of hope, and that’s okay. It’s an expression of how someone feels. But I knew that, for me, constantly feeling afraid of the world was stagnating.
Acquainting myself with a bit more of the Knowledge of Good has prompted ideas for future children’s books. It makes life more colorful. It forces me to engage with the world. And when I stop for a moment to breathe, it makes me aware of how blessedly creative – and hopeful – engagement can be.
I love to stop and ponder the headless statue whenever I go over to Bedlam Farm, the home of bestselling author John Katz and artist Maria Wulf.
This weekend I was there to participate in their semi-annual Open House, celebrating Rural Art and the creative spark that lives in all of us. I love the Open House because you can’t get up the driveway without running into an old friend and fellow art junkie, but this year there was something deeper to love, and it gave me a clue as to what might have happened to the pilgrim’s head.
As happens with every Open House, people from all walks of life and points of view came together to enjoy the art. Throughout the day I overheard people praising the work of others. Sitting under the apple tree on a wicker love-seat, I heard one visitor contemplating reviving her creative life as another enthusiastically encouraged her. We watched sheep herding and listened to kids relatively new to this country sharing their musical talents with a damp-eyes audience.
This weekend ended up being, for me, about nurturing the idea that the things we have in common–the things that bind us–are more beautiful and powerful and than those that divide us. There seemed to be a mass mutual recognition that our creative sparks are worth fanning and when we come together to encourage people’s gifts, we are all better.
That thought kind of carried my head into the clouds as I sat on that love-seat on Sunday, and I realize that’s probably what happened to the little pilgrim statue at Bedlam Farm too. I think he found himself at the altar of creativity (featuring a recycled art sculpture by Ed Gulley) and, keeping his feet on the ground, let his head get lost in the clouds as he chased his own creative spark.
It’s a worthy pursuit, and I think all of us who had a chance to sit near the altar this weekend went home full of sparks to nurture and share.