I went out for a treasure hunt after work, sure the entire blueberry crop would have been poached by Japanese beetles. Fortunately, the heat that every Vermonter has sworn they won’t complain about and the humidity we will gripe about seems to have produced a harvest big enough for us and the bugs. I should be happy with enough for a few desserts, but, this year, I want more.
This time most summers we’re planning a trip out to Lake Michigan for an almost annual, unofficial family reunion near South Haven, Michigan. We’re not this year.
I’ve been going to that spot in Michigan since I was a fetus. My grandparents are buried there. We’ve solved the world’s problems sitting around the table on the porch there, watching the sun set over the lake, noting how much the wind in the trees sounds like wave lapping the shore. We’ve forgotten the answers before bed and celebrated the fact of family there for almost every summer of our existences.
But It holds another meaning for me.
Eighteen years ago, the Big Guy and I missed Michigan for the first time. In April, my job had moved us to Germany while I was six months pregnant, and Thing1 was due at the end of July. There would have been no travel that summer.
Thing1 refused to vacate my womb until the last possible minute. The extended family had convened along the lake. Early in the morning the first week in August, the Big Guy phoned th gang in Michigan. They huddled around their speaker phone, as the Big Guy, Thing1 and I took turns talking, crying and babbling about the newest member of the family.
The next year we were all together along the lake.
We celebrated Thing1’s first birthday there.
We celebrated his second birthday there and, because his birthday falls smack dab in the middle of blueberry season, we celebrated with blueberries and cake.
Thing1 has celebrated almost every birthday there with his parents and grandparents and cousins, always with blueberries, and for the last four or five years, blueberry pie.
This summer when Thing1 turns eighteen, we won’t be in Michigan because the Big Guy is getting ready to get a new knee. It’s a good reason to stay home.
As I write this, however, we’re getting ready to take Thing1 back to the hospital for the second time this week to address his anemia, to talk about a new medication and possibly stronger measures to get his auto-immune disease under control.
He is barely eating. He is getting winded after short walks. He is not looking like his normal almost eighteen-year-old self, and we need for him to get at least a little of his own back before he flies our coop.
Last summer, just before we left for Michigan, Thing1 marked his birthday with a hike up the back of Equinox Mountain. He texting us updates of storms and bears on the path until his cell phone died and shortly before he home announcing that he felt truly alive.
We don’t know what the next few weeks or even months hold, but, barring a miracle in the next few weeks, there will be no 10 mile hike. There will be no blueberry festival or typical 18th birthday bash.
There will be a celebration, however. Even if it’s just our family of four cuddled on the couch, we will make sure he knows that, no matter what the circumstances, his being part of our clan for the last eighteen years, his having made us a clan, is something worth celebrating. And, if I have any say in the matter, it will be with blueberries.
Summer camp hasn’t started yet, so the boys are enjoying the fully unscheduled portion of summer. They go to bed, mostly, when they want. They get up when they’re done sleeping, lately, only time to binge watch Avengers movies together until friends call or dinner time.
This morning Thing2 was finishing up the umpteenth viewing of Spiderman – Yet Another Spider-Man Origins Movie and getting ready to move onto The Unknown Hero – A Filler Episode About A Guy we just made up but that You Need Your Parents to Buy If You Want to Understand All The Sequels when I realized I hadn’t heard the gentle sounds of found two boys not arguing all morning. I checked the clock and realize it was lunchtime.
Thing1 is normally very good about getting himself out of bed early enough in the morning to make sure he gets enough food to get his medication. At ten I had texted him it was time to get up. I saw the text was delivered, but by noon, it still hadn’t been read, and I knew today he needed a push.
I called up the stairs to his bedroom but got no answer and climbed up as quietly as possible. When I got to the top, he was curled up on his side, and, knowing he usually favors sleeping on his back, I got nervous. I called him again and still got no answer. Resisting the urge to channel my inner all Shirley MacLaine in Terms of Endearment, slapping my kid awake to be sure he hadn’t croaked in the 4 hours since I’d first called to him, I went over and gave him a gentle nudge on the shoulder. He didn’t answer, and I called again.
I knew he wasn’t dead. Very few people die from his disease. I did know his medications have been as reliable as my first Pinto, and if his flare up was turning into a scorcher, we might need to take a drive down to the ER to treat the acute symptoms until the pharmaceuticals and cannabis oil could regroup in his intestines.
Six months into his flare up, and Thing1 has learned that he’ll never not notice it. What’s changed over the last six months,though, is how quickly we let it derail a day or a life. Without being sanguine about the need to address and treat symptoms and stay in touch with doctors, we’ve also learned when to race to the ER and when it’s okay to wait for a call from the doctor. We’ve learned to distinguish the signs of a little more inflammation merely exhausting him into extra naps for the days and when the disease is firebombing his insides until he’s on the road to anemia again.
Most mornings, my main concern is that he gets good about getting himself out of bed before he moves out in the fall. We’re still making plans for fall, not always sure if we’re being determined or a little foolhardy. The reality, however, is that anything could happen between now and September, even things that have nothing to do with a chronic illness. Those things could help him on his way or completely derail him, but until those possibilities become realities, we keep plotting the points on his journey through the summer and into his future.
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.