I gave everything I had advocating for my son. There was never enough time, space or energy for anything else.
Marriages sometimes end.
I should know that better than most people: I’ve been a family-law clerk for 14 years—my entire adult life—and I, myself, am a product of divorce. Were it not for marital woes, I wouldn’t have a job. I’ve been toiling in the unhappiness of others for so long, I’ve become desensitized to it—so much so that I thought, beyond a shadow of a doubt, that my sheer exposure and experience alone dictated that I’d never be in the same situation as my clients. I thought I knew the hows and whys better than they did because (I thought) I had insight, while they only had hindsight.
What happened to my marriage is, sadly, so cliché. My husband, Simon*, and I just broke it.
When our first son, Isaac, was born, only a year into our marriage, he was so sick, and we didn’t know why. He was born with a rare disease called galactosemia, an inborn error of metabolism where milk and milk products become like poison to him. Involuntarily, I allowed that to become my focus in extreme ways. I read what felt like the entire Internet. I researched developmental milestones, dairy-free recipes and calcium supplements. When I got bad news, I tried to position myself against it—as the person who would have a “best case” outcome. I cried at doctors’ appointments and had difficulty falling asleep every night. The stress was overwhelming.
I took his illness on my shoulders and let it wear deep grooves into my skin. I let the guilt of our combined bad genetics eat away at me like a ravenous vulture, and the guilt of inadvertently poisoning my son with breast milk became an inexplicable burden. I’m still working through that guilt, and I guess, at the end of the day, no person can be expected to live beside that kind of sadness and despair.
I’ve dealt with what I hope is my lifetime’s share of adversity over the past six years since our eldest son, Isaac, was born. He is a gorgeous, dark-eyed, always-smiling, thoughtful boy who loves his little brother to bits. Along with galactosemia, Isaac has autism spectrum disorder, global developmental delay and a moderate intellectual disability that dictates that he’ll likely never be literate or self-sufficient. His speech skills are limited, and his fine motor skills are behind. His ceiling, they say, is that of a second grader. Those are tough pills to swallow individually but tougher still when presented as a cocktail of sorts.
But time is a sieve, and sometimes we give in and walk away. Isaac’s conditions waged a very quiet yet painful war of attrition against me. A life full of fight is so exhausting. Isaac is the most beautiful boy and, like all parents, we wanted only the best for him. As a special person with special needs, his best is simply different from that of most children. Fights popped up everywhere, from the type of child care and classroom that were best suited to him to the type of therapy he needed to the best way to access the information we needed.
My spirit was forever altered when I realized, first-hand, the struggles of a person who is simply not a carbon copy of you or me but rather a special person with special needs. It was in that change that my unanticipated advocacy for my boy became so personal. I put everything I had into it, to get for him what I thought he needed. I wrote letters, petitions and emails and spoke to other parents. I sought out advice. I spoke to newspapers and magazines. I started an advocacy group, ran a marathon every year for SickKids and raised more than $60,000 for research. I let it take control of me, and I ignored the rest of the world operating around me, independent of my strife. I retreated and pulled away—not just from Simon but from everything.
I find that it helps to eulogize these hardships. It’s therapeutic, like wringing out a damp cloth until every last drop of water has fallen and until your wrists hurt from the twisting motion. By doing so, I am able to be clearer with myself. A eulogy should never be confused with an elegy (a poem for the dead) or an obituary (a biographical notice of death). Indeed, eulogies are written in high praise and recognition of a person or a thing. They can be given at a funeral, but they can also be given at a wedding, a retirement party or any other life-cycle event you can think of. And so, my eulogy to my marriage is written with respect, admiration and commitment.
United as we once were in our love for each other, we now stand united in our mutual desire to provide the best lives possible to our two most important accomplishments: our sons. Each day, I grow more comfortable with the idea that, as fiercely as I loved my marriage and my husband, I didn’t always show it. And though it’s over, I can still write. I can still acknowledge that if you could ever write a love letter to someone you no longer love, this would be it.
SCHWARTZ, Charlotte & Simon
Started: May 23, 2008
Ended: Sometime, though it’s not clear when
Charlotte and Simon Schwartz, proud parents to Isaac and Eden, east-end Torontonians, fitness enthusiasts, galactosemia advocates, avid road-trippers and readers of the most opposite of books, slipped away late last night after a long-fought battle arising from complications of losing their way. They were together for eight years.
She was 33 years old. Outspoken, crushed by the world’s injustices and unrelenting in her pursuit of what was right, she insisted on doing things most people would pay someone else to do for them. She walked great distances for no reason and gave tremendous effort for often-infinitesimal returns. She was stubborn—a trait that only increased with age and time. She loved beautiful things and was hopelessly nostalgic, forever plagued by a memory with a vice-like grip on the past—a memory that, against her will, always allowed past events to seep into current ones and poison them. She felt worn down, tired and underappreciated—the plague of the modern-day, control-freak mother who does everything and never accepts help. Most of all, she loved her family and her children and was only just becoming comfortable with the imperfectness of it all.
He was 35, with a stoic but unwavering devotion to his children. He always reminded her that everything would work out, even when he knew that perhaps it wouldn’t. He was quiet but loud when it mattered. In their early days, he once told her, softly before the day began, that she “made everything OK,” and she hung on to those words and carried them through eight years of life’s most unexpected challenges. This moment fuelled her belief that, no matter what, they could figure things out. After all, she made everything OK.
He taught her great things about life, organization and deeper thinking. He inspired her to do more, to know more, to read and, indirectly, to write more. He always made sure that the chicken was cooked through. He was constantly busy, always working at jobs and hobbies and forever trying to strike a balance between what the heart wanted and what the head wanted. He was the person who possessed the most simple goodness she had ever known. When their newborn fell ill, he became her hero among ordinary people by calming her fears. In turn, he had made everything OK.
On their wedding day, she promised to dance with him on their first anniversary and on their 25th. She promised to walk (or run) alongside him for all time. But words are so easy, and in a life of living like ships passing in the night, there never seems to be enough time to use them anyway. We always think we’ll have more time.
Asked about the loss of the Schwartzes, friends and family described Charlotte and Simon as a great team. Their union was one of schedule dominoes and overlapping obligations but one that always ended up working out. They expressed shock and sadness at the couple’s demise. If any two were going to make it, it was supposed to be them—not because of evidence of an incredible bond of love tying them together but, at the very least, for their boys. There would always be time later for love. Once the dust settled from the initial hardships, so soon after their marriage, they would find the time. They would make the time. They would figure it out.
Friends expressed their deepest sympathies for the inevitable transitions that the family members would undergo, for Isaiah and Rivers especially. Knowing what they knew of Simon and Charlotte, though, they were confident that, eventually, everything would be fine. They knew Simon would stand by quietly while Charlotte proclaimed her sorrows as piercing cries, fits of rage and streams of unintelligible profanities and that Charlotte would eventually accept that Simon’s silence was part of who he was, not a metric of how much he cared.
In the den of the tiny, drafty east-end Toronto home where Charlotte lives now with the boys sits a first-edition copy of The Brothers Karamazov, one of Simon’s favourite books and her gift to him when they moved into their home together. It reads “You will burn and you will burn out; you will be healed and come back again.” Those words shall be inscribed on the epitaph of their marriage, encouraging the theme of healing and moving on and recognizing that fatigue is never equal to failure. No one gave up; they only gave in.
In lieu of flowers, the Schwartzes ask that visitors bring words of warmth and honesty and that they refrain from the fuel of gossip and speculation. Until you’ve lived the eight years they have, you don’t know what you don’t know. You can guess at what you might do, but you’d almost always guess wrong.
*Names have been changed.
This article was originally published in June 2017.
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