The Hillhouse

The Journey of a Mother and Son

Minor/Major April 25, 2021

This morning I took my son to have his first covid vaccine. As he is still 17 and a minor, I was allowed to accompany him. But for his second vaccine in three weeks, I will be made to wait outside.

There really is no way to prepare a mother’s heart for this transition. Of course I’ve known it was coming and have tried as best I can to make peace with the new reality. Come this Wednesday, Elihu will no longer be a minor. No longer will I be the keeper of his medical records, no longer will I be responsible for his money, no longer will I be the recipient of his grades. How very strange indeed. I have been this person’s sole keeper in every way for the entirety of his life – and in just one moment the whole thing comes to a close. Thankfully he is an incredibly responsible person, and he is well-equipped to take the reigns. But me, I’m just not ready to hand them over.

When Elihu was two and a half years old he had a bad case of the flu, and I took him to the emergency room. There was a one-year-old in the waiting room, and Elihu doted on the tiny boy. The child had had an earache and was frantically crying in distress, to which Elihu responded with such tenderness. He cooed to the toddler, helped distract and soothe him. They spent a good fifteen minutes together, and by the time we were called in, Elihu had coaxed the child into a quiet and peaceful state. It was shortly after we got into the car and began to drive home that Elihu spoke his very first sentence. “When I grow up, I want to have a baby, Mama”. I looked in the rear view mirror, stunned at what I’d just heard. I saw him just sitting there, his pacifier returned to his mouth and looking out the window. My tiny boy, such a huge concept. My son had always been different, even at that age I’d known it. This sentence was just the first of many confirmations. He has always been wise beyond his years.

I first knew there was something distinctly different about my son when he was four months old. Aside from being colicky and hard-pressed to sleep without me next to him, I just knew something was not right. I couldn’t put my finger on it, but clues were starting to add up. When I walked him outside in a stroller, he’d close his eyes and slump to the side, but when we’d enter a dark indoor space he’d sit up and open his eyes. He couldn’t open his eyes in the great room of our home, the south wall of which was entirely made of windows, but he came to life in the dark basement playroom. I knew he had an inability to see in bright light, but until he could speak to us, we’d be left to guess about how he experienced his world. One evening I remember nursing and then rocking him, trying unsuccessfully to get him to sleep. And so I held him tightly to me and twisted my torso from side to side, desperate to find the rhythm that would finally take. I remember pulling him away from my chest and looking into his eyes, to find that his pupils were rapidly bouncing up and down. I flushed with adrenaline; had I just done this to him? Had I shaken my baby? A careful inventory of my actions told me that I had not, and yet something had changed. I remember wishing so dearly that I could just know if he was afraid, if he was in discomfort. How, oh how could I make it better?

It was my friendship with the keyboard player in Steppenwolf that became the key to understanding what was ‘wrong’ with Elihu. Years earlier I’d met John Kay, the lead singer and fellow who penned the iconic song “Born to Be Wild”, and I’d known him to have some condition with his eyes that made him colorblind, light-sensitive and also unable to drive (ironic, isn’t it? His song is the anthem for bikers everywhere, and yet John’s never driven a day in his life). As I sat at my desk pondering my son’s situation, I flashed back on this memory and immediately fired off an email to Mike. He responded, confirming my suspicion. And there it was. Without an internet search, without a doctor’s diagnosis. I’d learned that my son had Achromatopsia. Now, finally, I knew.

I’d had some neighbor girls take Elihu to the park, and instantly I felt a deep panic, an intense need to find and hold my baby. Now that I knew, I had to make it better. I ran through the streets until I spied the small clump of kids – Elihu was riding on the shoulders of one of the taller girls, his eyes squinted shut. I grabbed him from her and held him to my chest, shielding his eyes from the daylight. I shall always remember how I felt in that moment; I become a fiercely protective mother, and in that instant I became wholly dedicated to my son’s comfort and ease. In the months that followed I found a low vision doctor in Chicago – who actually specialized in Achromats – and Elihu would soon get his first dark glasses. He would take his first steps outdoors, and our world would become a little less stressful. And even though his father loved him dearly, he did not share my concerns for our son. He wasn’t moved by Elihu’s first steps in daylight, he thought I made too much of Elihu’s light sensitivity, and he would often chastise me for coddling our boy. But I didn’t care. Like I said, my mother’s heart was fierce. Nothing would prevent me from being Elihu’s champion.

There was so much I needed to impart to my son. Ever since he could walk it was my deepest desire to equip him to live as well as possible in this difficult world. My heart longed to give him ease, to give him insight and understanding. There was so much to teach him – where to begin? Folks who know me understand that I’m pretty frank and unedited in my speech. I say what I mean, and I believe for the most part that it’s better to express than to withhold. And that’s the tack I took with my son. If my four-year-old wanted to know how an engine worked, I was going to explain it to him. Seriously. He was going to get the real story, not some dumbed-down explanation meant just for kids. I always spoke to my tiny son as if he was an adult. That’s not to say I didn’t coo to him as a baby, or speak in tender, maternal tones to him – in fact I always spoke to him as gently and lovingly – and respectfully – as possible. I never scolded him as if he were an idiot. I always offered an explanation of actions and consequences, as if he understood. Because if he didn’t yet understand, he would at some point.

How could I teach him about the seasons, the holidays, the traditions of our world? How could I convey the context, the meanings of so many seemingly random cues? And if he saw no color at all, and if indeed the world was hazy and hard to see, how could I teach him to discern things? All of this nagged at me during my son’s childhood. And so I chose to read to him. A lot. (I wish now that I’d kept a list of the dozens upon dozens of books we read. I implore all new parents who might be reading this to keep a log of the tomes you read to your child. In revisiting them you will also revisit shared childhood memories.) Since my son’s vision was not great, and since reading for a good length of time fatigued him, I felt it was best that I take on the job. Every night of his life until he was around ten or eleven I lay next to him and read. Oh the places we went together. The adventures we had. What a huge and full life we had just from our nighttime books alone. This, I think, is in large part why my son turned out to be such a thinker. Having limited vision has also contributed; he has been left to live much of his life inside of his thoughts. While the other kids were watching movies or playing video games, Elihu was identifying birdsongs, inventing melodies of his own or creating lines of poetry.

My mother’s heart had always been heavy with the knowledge that my son would not always be able to join his classmates in so many experiences that most kids consider mundane. Swimming doesn’t work well on account of the bright light that usually accompanies the experience. Moving fast – as in running – is dicey in that Elihu can’t really see things until they’re upon him. When he was smaller the two of us had a system we used while out walking whereby he would minimize the many missteps, falls and scrapes that came of his limited vision. Elihu couldn’t always discern differences in grade, so as we walked together I’d quietly offer “step up” or “flat surface” as we went along. So imagine my surprise when one day at lunchtime my legally blind child whizzed by me on a bike in front of his school! His fifth grade teacher had taught him in just a few periods. I’d always wondered how – or even if – we would tackle this skill. I cried! Oh such gratitude I had for that dear woman! This step was huge. And it opened new doors for my son that I had previously thought would never be options. And can you imagine that my twelfth-grade son has been getting straight As in his phys ed classes? In fact he is even rather aggressive in some sports – but if you’d told me this a few years ago I would not have believed it possible.

Elihu’s father had decided to leave the marriage our son was five. I’d thought that Elihu was too young to grasp the situation, and so when we moved across the country to live in a house next door to his grandparents, I’d thought it wouldn’t be a big deal. He would have everything he needed, lots of nature around, and family too. I always welcomed his father into our home, and have always encouraged their relationship, so he saw his father quite a bit in the early years here at the Hillhouse. (My friends never understood this arrangement; they thought it was wrong to have my ex stay here with us. I thought it was the humane and right thing by way of both dad and son. My comfort could take a back seat for a few days here and there.) I did absolutely everything I could to ensure my son had the best possible childhood. I think I did the best I could with my situation.

However, it became apparent in the first few years post-move, that Elihu had been deeply saddened by the change. I’d thought that if I’d kept up appearances and continued to be of relatively good cheer that it would mitigate any possible negative outcomes. I hadn’t wanted my son to suffer the emotional challenges that other children of divorced parents do. Yet for a while my dear son really was troubled. If I’d expected him to be sensitive to the nuances of life, how was it that I thought he wouldn’t notice this huge life change? A year or so after we moved here I chose to speak to him candidly about the divorce, how it had troubled me too, but how both people needed to be in agreement for marriage to work, and how his father and I were not in agreement. I believe that the truth helped him to understand and make some peace with the situation. It was a really tough experience for both of us, but we got through it by addressing it honestly. Hard a time as it was, it helped us each to grow and become more emotionally resilient.

I needn’t worry about my son now. In fact, I’m tremendously eager for the life that awaits him. He is completely ready to take on absolutely anything. (Recently I apologized – again – for having brought him into this crappy world. I asked him if he might be a bit discouraged about the challenges ahead. “On the contrary,” he answered. “I’m excited. I’m gonna make life my bitch”. !!) Me, I’ve never been particularly good at anything – I don’t enjoy working hard (unless it involves music or writing, then I’m all in), I never did well in school, never had a real day job, never felt like I did things the right or ‘normal’ way. Whatever that may be. However there is one thing I know that I have done very well: I have raised a happy and successful human being. I have given my son love, respect, education, humor and a shit-ton of really good, home-cooked meals. I have spoken to him as a peer. I have held nothing back. There are plenty of books on child-rearing which will tell you I did a lot of things wrong. Most parents would probably frown on my parenting choices. So glad I didn’t listen to all that static.

Such a strange thing that along with my greatest success also comes my greatest challenge: letting it all go. How do I do that? Elihu has been my partner for seventeen long years. Seeing him off into the world is going to be the single hardest thing I’ve ever done in my entire life. But it’s essential for my growth, for his too. It’s a mandatory part of the process. And once I’m past the fear, I know there’s going to be a lot of joy.

Because this next chapter of our lives is going to be huge. Major, in fact.

______________________________________________________________________

An update on the college journey:

With a GPA of 4.3, an extensive lists of personal achievements, fluency in four languages plus some pretty exceptional writing skills, Elihu and I had felt he had a fairly good chance of being accepted at the nation’s top schools, but it proved to be a surprise when he was rejected by all of the places where he applied (save Harvard, more on that shortly).

We both understand that this year is a unique one; with gap year students plus those forced to wait a year due to the pandemic, there are a whole lot more students vying for spots. At the end of the day Elihu has been accepted by RPI (Rensselaer Polytechnic Institute in Troy, New York) with a generous scholarship, but in that he attended two summer programs there – and it’s a mere 35 minute drive from home – he’d rather go somewhere new, different and a bit further from home. Plus his interest in liberal arts has really ramped up over the past few years, so he’s been hesitant to commit to a technical school.

He has been put on the Harvard waitlist, and he’s done everything in his power to distinguish himself from the crowd. He’s personally written to every administrator who might have a part in the final decision. Truly, he’s been tenacious. But in an unexpected twist, Elihu has been strongly advised by several mentors not to choose Harvard, even if accepted. They make the point that he will more easily rise to the top in a less demanding school, and that he can attend an Ivy for graduate work if it still appeals. Interesting input, and it will remain under consideration.

How surprising to us that at this late date Elihu still does not know where his future lies. To his credit he’s completely calm about the whole thing. Not much he can do. He’s done his very best, and now it’s just time to let the universe do its thing… Feel free to visit my Facebook page for updates. (We have been told that Harvard will respond with their decision by mid May.)

 

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