The Big Guy and Thing1 have been working to replace the radiator in Thing1’s Volvo wagon, a car that’s seen more winters than he has, gifted to him by my parents when they bought a new one two years ago.
The Big Guy went to a car show with a friend earlier in the day. Interested more in exotic cars, our boys Stayed home while I worked. I’m working Sunday, Fathers Day, so the holiday atmosphere is a bit muted.
We’re closing out the afternoon as the Big Guy and Thing1 closed out the repair job. Thing one was so engrossed in the project he forgot to try to dodge the camera.
It’s a quiet, gorgeous afternoon, but it’s not the shared love of cars and fixing things that makes the afternoon glow. It’s watching them bond and the Big Guy’s pride as he remembers he had a big hand in raising the capable, affable mechanic next to him.
I can’t help feel like that’s the most best way to honor a relationship between father and son.
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 senior class graduates Saturday. The fifth grade, the elementary school’s senior class, celebrated their ‘moving up’ to middle school a few days earlier. Thing2’s graduation to the next step of his education was a huge milestone for us. It’s the first time in twelve years that we won’t have a child in elementary school. But it’s not only our perspective that made the afternoon unique.
The Big Guy and I each went to schools with thousands of kids. Graduation at mine lasted almost two hours because we had to wait for hundreds of kids to accept their diplomas. I knew the principal’s name, but I doubt he knew mine before he read it on the slip attached to my diploma. We were widgets, school was a factory.
At Thing2’s ceremony, there were songs. The music teacher handed out awards to the kids who had done chorus and band. The teachers from each 13-kid section handed out academic awards, and then, at the fifteen-minute mark, it was time to hand out the ‘diplomas’.
The principal started with a gentle reminder of the rehearsal instructions the kids had received earlier, producing a chorus of giggles from the risers behind her. She started to read out a name and the first boy climbed down to accept his certificate, but then she stopped.
“Wait a minute Mr. Smith,” she said, holding up her hand and seeming to wipe a speck of dust from her eye. The grinning boy froze, watching her as she stopped to tell the parents a story about his first day at preschool. It took less than thirty seconds, and the entire diploma handoff took less than thirty minutes for all thirty kids, even though, for most of them, the principal paused to recount a special moment or running joke.
Even for a small state like Vermont, we know our school system is on the very small side. It’s small enough that, despite ranking second in the state, there’s been a push from above for improved efficiency and lower costs by consolidating with other districts. Our district has strenuously resisted that push, and much of the resistance has focused on the school’s academic achievements. The district has also conducted more than one study to justify its existence financially.
It was Thing2’s commencement that reminded me that, in education, value can’t be determined solely by efficiency, or even scores.
The principal and teacher to student ratio won’t be any different on Saturday when Thing1 is climbing the risers. The high school principal has taught each of the kids, has coached many of them in little league, has been a presence in most of their lives for the last thirteen years. The teachers have been coaches, are parents of their classmates.
The whole ceremony, if history is any judge, will take 30-45 minutes. In those 45 minutes, however, will be packed thirteen years of phone calls and parent-teacher conferences, of field-trips and spur-of-the-moment meetings to talk over a parent’s concern, of newsletters and community service days, of nurses calling to make sure everything’s still alright, of teachers saying ‘he can do better’ because they absolutely believe that their students can. Those 45 minutes will be the result of thirteen years of creating young adults invested in a community that they know has invested in them. They will be the results of a community saw something more important than widgets.
It’s the week before graduation. Thing1 and the Big Guy are working together to disassemble a third-hand swing set that has become too tired and worn to allow even the cats to play on. The swing set arrived at the house when we did, when Thing1 was in first grade and Thing2 was on the way. This weekend, both boys are too big to use it, and watching the Big Guy and Thing1 work together as equals to take it apart and clean up the rest of the yard for next weekend is making my eyes sweaty.
Thing1’s on weekly Humira now. The levels still aren’t high enough to make a difference, and he’s using cannabis oil to handle the inflammation. I get to make the odd joke about being mom of the year for getting my kid to use pot (it’s not, it’s hemp), but it is working to a degree. He’s weaning off of Prednisone which isn’t working, still taking Lialda, which isn’t working and waiting for the next blood test to see if we’ll stick with Humira or move on to the next trial-and-error.
And he’s waiting for his life to begin.
Except a funny thing has happened in the last few weeks. In between the phone calls and the daily inquiries into his bowel movements, he’s managed to get to alumni dinners for this year’s grads. He’s helped plan and pull off a senior prank centered around screwing up a parking lot for a day. He’s scheduled a new student orientation day for college.
We don’t know if he’ll be going to college in the fall. We don’t know what his future holds. The reality is, however, even if he weren’t sick, we wouldn’t know that.
Next week his grandparents and aunt will come to see him graduate. We’ll have a small party at home with a burger bar, music and a slide show of the most embarrassing moments of his first 1.78 decades.
It’s been hot the last few days. We all laugh as we realize the snow tires just came off a week or two ago. It’s springing into summer, and, just as quickly, Thing1 will be into his ‘real’ life. He’ll take his Ulcerative Colitis with him. We’ll help him fight for as much as we can for as long as we can, but, in the long run, the bulk of the battle will be his.
Hopefully he’s heading into a long summer, but the nature of his disease is that he will see winter again. Some winters are easy. Others throw a Nor-easter at you every week until you think you’ll throw in the shovel and let the winter bury you. This winter, he learned how to dig.
Because he also learned that, for the people who can and will dig, the winter does end. It always ends.
Thing2 is sitting across the couch from me right now tapping on an old laptop my parents bequeathed him when they upgraded theirs. He’s working on a project, talking through the lines as he taps and proving I know nothing about parenting.
I’ve worked in some sort of IT for the better part of the last 25 years. I’m the last person to tell a kid they shouldn’t play on a computer, but Thing1 got sucked into Minecraft in middle school, torpedoing his grades for over a year. It’s safe to say, the Big Guy and I are wary of Thing2 acquiring a tech addition.
Thing2 missed a fair amount of school this winter due to severe pain from inflamed lymph nodes. The pain intensified with each bout of flu or strep he contracted in the petrie dish of elementary school, and we were worried he would fall behind.
Most sick days he rested on the couch with an iPad or Harry Potter book while I worked on support tickets. I’d check during the day to make sure his latest YouTube obsession was PG-11, but for most of the day I let him take responsibility for his own amusement. They weren’t my finest parenting hours.
Thing1 got into video games about the same time, solely on the strength of his test scores, that he also got into a middle school accelerated program. He’d coasted through elementary school math, aptitude compensating for apathy. Except for mathy-science stuff, he needed serious prodding to stay on track.
When he started the more challenging program, I asked the program head how I could help him stay more organized. Her answer surprised me.
“I don’t want you to help him. He’ll learn to rise to expectations.”
So we took the hands-off approach. Bad report cards led to loss of privileges, but when he failed, he failed. When he did well, the success was his. That experience guided him like a river winnows out earth and rock to find the best route. It’s helped him learn to stand on his own two feet and, even if he stumbles, to keep trying.
I know telling the world that I let my kid spend two months playing on the iPad is inviting slings and arrows from parenting experts. Left to his own devices, however, Thing2 scurries from couch to boy-cave, moving laundry hampers and draping sheets over his top bunk to create a movie set between naps. The iPad was soon burgeoning with special effects app and ‘screen tests’. By the time he got back to school full time, he had written a script for a Star Wars fan video, complete with a mental cast list consisting of his classmates.
It’s almost Thing2’s turn to apply to that program, and, watching him create and rise to his own expectations, I’m pretty sure we’ll use the same approach. We’ll call it good parenting even though he’ll be doing most of the heavy lifting.