What Kind of Mother

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.

Negotiations


Since he could crawl, Thing2 has been chasing after Thing1.

Thing1 played in Little League. Thing2 cheered for four seasons straight, mangling his brother’s name at top decibel. Thing1 started playing golf, Thing 2 held the flags. Thing1 wanted to be alone, Thing2 had to be next to him and even on him.

Thing1 was about four when he began begging us for a baby brother. He didn’t want more playdates, and he definitely didn’t want a baby sister. He even accepted that, eleven years ago, Thing2 was the big present that Christmas.

He was very serious about his responsibilities as his big-brother. He read to Thing2 and held his hand on the jungle gyms. He made sure that I didn’t pick any outfits or Halloween costumes that violated the boy code of ‘not-too-cute’.

Seventeen years later, Thing2 is still chasing after, but for the last few years Thing1 has been wanting ‘space’. Often their relationship is like watching a match chasing a long fuse, and the match has been burning hotter as he realizes his big brother is about to put some serious geographic space between them.

This afternoon, after a morning of working together with the Big Guy in the yard, Thing1 grabbed his keys and golf clubs to go to the free course at the park.  Thing2 watched him and retreated to the couch to work on a script. Thing1 noticed his brother sitting in a dark corner on a sunny day, knowing I had to work and that Dad needed to rest his bum knee.

“Get up off the couch,” he ordered. Thing2 started to object, but years of hero worship, like any cult, is hard to fight.

“Why?” he asked instead.

“You’re coming with me,” Thing1 announced. “It’s too nice a day to sit inside.”

The Big Guy and I looked at each other. Thing1 is very serious about his golf time, especially since his hair-trigger colon has kept him off the fairway all spring. The last time the two tried playing together, three-year-old Thing2 had rearranged all the flags on the practice putting green so they ‘lined up’ and Thing1 had sworn he wouldn’t have him as a partner. 

But, as we get the house ready for graduation, Thing2 pitches in with as much vigor as his taller but somehow not-as-much-older older brother before they head out for a fun afternoon together and without parental supervision.  They both seem to understand that something was being renegotiated for the better.

Summer Breaks


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.

How to Raise a Parent


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.

Come Together


We weren’t late, but we weren’t early enough to Thing2’s band concert to have a good seat selection. The elementary school band is small, and I was surprised by the crowd.

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.