Kelly Cervantes is a writer, speaker, and advocate best known for her blog Inchstones, where she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide, who died just five days shy of her fourth birthday in October 2019.
No one told me how much time I would spend in bed the weeks, months, and years following Adelaide’s death. No one told me—or maybe I just wasn’t paying attention when they did—how exhausting grief is.
Yes, of course it’s emotionally exhausting, but it is also physically and mentally debilitating. Every cell of my body yearned to be horizontal and covered in cotton. It was an exacting feat to rise in the morning, and it required an equally strenuous effort to resist my bed’s siren song to return. I often fell victim to its haunting melody, filled with false promises of returning to the days when my daughter was alive. The days when I would lie beside her in her twin bed, snuggle into her neck, and savor the scent of her baby-soft skin. Back when I wondered if all this time I’d already spent grieving her would count as time served. I wasn’t a prisoner per se, but I had spent the better part of three years willingly chained to my medically complex daughter. I had grieved the first words never uttered, the first steps never taken, the first day of preschool never attended. There had been plenty of celebrations as well, but the grief was always there, tingeing our best moments together like a bad photo filter. Certainly, all those tears must count for something?
When I told my mental-health-therapist mother about my hope for time-served grief, she smiled gently and all too knowingly before telling me she didn’t think it worked that way. That I ought to expect a year or two of intense grief before I began to feel like some semblance of myself again.
A year?! Or two?!
What she didn’t tell me then, but would clue me in to a few months later, when the concept wasn’t quite so overwhelming, was that I would never truly feel like me again. I had been forever changed. I needed to constantly remind myself of that in those first few years. I wasn’t pushing forward to get back to who I was, but instead pushing forward to grow into the next version of myself.
Still, after Adelaide passed, and I connected with people who had lost a loved one suddenly as well as those who had known the end was coming, I concluded that my idea of time served could apply to those early days after her passing. My years of pre-grieving, if you will, allowed me to hit fast-forward on the shock and acceptance of our lost future in a way those stunned by loss could not and cannot.
Regardless, I am still left with a gaping void where my child used to be. I am still left with an unknown future because my entire existence revolved around her. I am still left with the guilt of acknowledging how much easier our life is now without her physical presence.
I am still left.
My “time served” didn’t lessen the pain or the length of my sentence. I just processed it all a little differently than those shocked by their loss. Not better, not worse, just different. We’ve all been left. The world moves on, creeping forward one excruciating day at a time with no concern for who’s taking part.
Making our way through grief can feel like we are swimming through syrup. It is thick, sticky, and gets on everything. Every action takes so much more additional effort. Then, when you look behind you, exhausted and fighting to stay above the surface, you realize you’ve barely moved from where you were.
And there are the times when no forward motion seems possible. You are stagnant, treading tar. The first time I felt this was a few months after Adelaide had passed. The meal train had concluded, the flowers had long since died and been thrown away, and, aside from the looks of pity in some people’s eyes when they greeted me, most everyone else had moved on. I was going to meetings, running errands, and generally doing life, but I felt directionless, purposeless.
When a friend, who had lost her father not too long before we said goodbye to Adelaide, asked where I was in the grieving process, I explained that I had moved past the debilitating phase where slothing is a legitimate activity, but I still felt off. Truer still was that I felt like my own skin was vacant. As if, out in the world, I was wearing a mask of my own face and wondering if anyone could tell. I felt empty. Like I’d taken up residence in some sort of grief limbo: going through the essential motions of life, committing to what was absolutely needed of me, but making no effort to go further. I mean, how did anyone actually expect me to function in this new normal without my daughter?
Then, a few months after speaking with my grieving friend, and after moving eight hundred miles away from all our friends who knew Adelaide best—in the middle of a pandemic—with the one-year anniversary of her death looming in front of me like an F5 tornado ready to destroy all my hard-fought healing, I found myself not just stuck, but actually regressing. I was lost and depressed. I felt broken. Not in a way that could be fixed with a spot of superglue, but irreparably shattered. I had reverted back to slothing.
With most activities and events still on hold and no dire purpose for me within our home, I found little reason to vacate the covers. There was more than one instance where I decided it would be easier if I wasn’t alive anymore. I didn’t wish for death exactly; I never made plans to carry it out. But my grief was heavier than the air in a crowded sauna, and if there had been a tragic accident that took my life, I would have gone in peace. I decided that Miguel and our then seven-year-old son, Jackson, would be okay without me, eventually.
They already had each other to depend on, which was more than I could guarantee either of them had from me.
Rationally, I knew this feeling was probably normal, though a smidge alarming. I understood that it was important to give myself time to recalibrate; I got that this was all part of the process. But at the same time, I was also anxious to get on with it. It wasn’t super comfortable existing this way, so how long was this phase going to last? It had been months since my friend had asked me where I was in the grief process—when would I get to feel like me again? Or some new version of me? Was this the new version of me? Good lord, I hoped not!
These were all rhetorical questions, of course. No one could give me an answer, especially since the grieving process is different for everyone. But I wanted a finish line and a goal to meet. That was how I had functioned up to this point in my life, whether with sales quotas at my events job or executing treatment plans as Adelaide’s caregiver. Where was my checklist, and who was erasing the progress I had made? My life flipped upside down in a single second when Adelaide died. It only seemed fair that it would flip right side up again just as suddenly, no?
What’s that you say? Life’s not fair? Clearly.
Fair or not, life does tend to give us signs when we are heading in the right direction. Like mile markers or landmarks by which we can navigate. I was driving down the street in our new hometown when I saw a mural on the side of a building that said “SURVIVE.” Nothing else, just “SURVIVE” in bright, spray-painted graffiti letters. I clung to that word because grief is something we live with, not so unlike the way someone grappling with addiction lives with their disease. They will say that they’re in recovery, but rarely that they have recovered. Similarly, I will never consider myself as a “survivor” or having survived my loss. No, it is a constant effort to survive. Some days the effort is minimal; other days that tornado is barreling straight toward me. But even then, or perhaps especially then, I have to look past the wind-tossed cow flying in front of my windshield and focus on surviving.
But how do you maneuver around that cow and start making forward progress again, especially if your inner compass isn’t entirely sure which way forward even is? What I discovered is fairly simple compared to the complexities of grief: choose what feels right now. Don’t worry about the future, try not to dwell entirely on the past, and focus on the present and what needs to be done, or what you want to do, in this exact moment.
This means giving yourself permission to be productive when the mood strikes. Have the energy to start that home project that’s been on the list for months? Do it! Inspired to clean the bathroom? By all means. Up for a call with a friend? Reach out! My salve was organizing. I love when everything has a place, regardless of whether my children or husband are capable of acknowledging said thing’s place. There were dozens of other more pressing tasks on my list, but instead I switched out the seasonal clothes in my closet, cleaned out the junk drawer, and went through the bible-high stack of papers on the desk. Whatever it is that you feel like you can do, do it, and do it free from any corresponding guilt. Don’t worry about something else you should be doing. Don’t worry about if you’re grieving enough or too little or how others might perceive your activity. The important thing is to do when doing feels right.
But this also means relieving yourself of similar guilt when you need to crawl back into bed thirty minutes later. It means saying yes to a dinner invitation, but then when the day arrives and the thought of leaving your home has you reaching for your anti-anxiety meds, allowing yourself to cancel.
So lean into those moments of productivity. Because being productive feels good—it gets those endorphins flowing. A ball in motion stays in motion, and all that. But keep in mind that grief doesn’t always adhere to the laws of physics, and our balls can roll along quite merrily until they just stop—no signs, no warning, just no more motion. When that happens, give yourself a moment . . . or a nap. Give in to grief’s weirder manifestations. For me, that means listening to an audio recording of my daughter’s oxygen concentrator. Here is a machine that I’d loathed: big, bulky, noisy, and tethered to Adelaide for the better part of the last year of her life. Then, after she passed, I found no sound more comforting than its bubbling water, puffing air, buzzing motor, and rattling plastic where the casing was coming apart. Like a white noise machine, I fell asleep to it for weeks.
“What helps you sleep? Melatonin? Chamomile tea? A nice warm bath?” someone might have asked. Nope. The sweet, sweet, sounds of a worse-for-wear oxygen concentrator. I imagine it’s like someone else listening to mundane old voicemails about picking up more eggs.
Grief is weird. So very, very weird.
I remember people telling me to take it “a day at a time.” They clearly did not know how long a day actually was. By choosing whatever feels right now, you only need to take the first scootch forward. It’s a lesson I had learned early in my daughter’s care: focus on inchstones, not milestones. Especially in the early childhood years, people focus so much on your child meeting milestones. But when your child is disabled, those milestones may take longer to achieve or look very different from what you had expected. So, instead of focusing on the milestones of, say, walking, you focus on the inchstones it takes to get there: better head control, or lifting and lowering a foot while in a gait trainer.
For the first two years of Adelaide’s life, we lived inchstone to inchstone, noting each time she sat unassisted a few seconds longer than she had the week before or vocalized a new sound or reached more consistently for an object. My concerns were still there, but as long as we were making progress, albeit mind-numbingly slow progress, I stayed hopeful. However, when Adelaide began regressing and our worst nightmare—that her condition was neurodegenerative—was confirmed, my original conception of inchstones became cold comfort. It was then that inchstones took on a new meaning for me. Just because I could no longer see even a half-inchstone’s worth of progress in Adelaide’s development didn’t mean that I couldn’t personally live inchstone to inchstone.
This philosophy carried me through Adelaide’s last months and continues to guide me well after her passing. After all, milestones don’t stop in childhood; there are graduations and marriages, careers and families. Adelaide taught me how to celebrate my personal inchstones on the way to life’s milestones—and this same logic can apply to grief. Celebrate getting out of bed, getting dressed, doing laundry, or leaving the house. Celebrate meeting up with a friend, feeling emotionally stable, or making it through a day without a nap. By focusing on my inchstones, I was able to lighten the weight of life’s grander pressures.
It helped me to make a to-do list with the most basic of activities. Celebrating the act of crossing off “brush teeth” may seem like a low bar, but remember those weeks when you couldn’t remember the last time you had in fact brushed your teeth? This is progress! These are your inchstones! By breaking things down and acknowledging even the smallest bit of progress, we can get an endorphin boost to keep our little ball rolling along.
Allow yourself to celebrate surviving another day, whether that’s with a piece of dark chocolate you have stashed away from prying eyes or by listening to their favorite song for the thousandth time. Small goals will inevitably build upon each other, and rewarding yourself is an encouragement to keep going. The tar will loosen around your ankles, and you can move forward again.
While we’re giving our minds gold star stickers for everyday tasks, it’s also important not to neglect our bodies. In the intro, I promised I wasn’t going to tell you to work out more, and I swear that is not where this is headed. It’s just that it turns out that grief can take a physical toll on our bodies as well. I’m talking beyond the exhaustion and the weight gain or loss—there can be actual physical ramifications of grief. Dr. Marilyn Mendoza, a clinical instructor at Tulane University and private practice psychologist, found that grief can in fact affect all twelve of the body’s systems. (For those of you who also fared poorly in your high school human physiology class, those are the cardiovascular, diges- tive, endocrine, integumentary, immune, lymphatic, muscular, nervous, renal, reproductive, respiratory, and skeletal systems.) Yeah, you read that right. Grief is not just emotional, it can impact every part of our bodies.
“In fact,” Dr. Mendoza writes, “during the first four to six months after the loss of a loved one, people are more likely to experience some type of physical problem, with men being at greater risk than women.”3 Essentially, grief is something that we must physically survive. And while grief can pop up anywhere in our bodies, it most commonly affects our immune, digestive, cardiovascular, and nervous systems. Basically, there is a reason we use words like “gut-wrenching,” “heartbreaking,” “numb,” and “shattered” to describe how grief makes us feel: it can literally do each of these things.
Awesome. Wow.
Which brings me to the week before Adelaide died, when I was sleeping in her bed every night. Not because I needed to, necessarily; she was hooked up to machines that would alert us if anything happened, and we had nurses in our home most nights. But I desperately needed to spend every last moment with her that I could. By that point, we were basically waiting for her to die—it was gut-wrenching and heartbreaking and numbing and shattering. The only saving grace of those days was that she was still with us. Other than that, they were basically torture.
One of those horrible, awful, no-good mornings while waiting for her to die, I woke up in her bed, not able to open my eyes. No, I did not have pink eye, and I had not been crying so much that they swelled shut. It was an inflammatory response that would sporadically occur again and again over the following year, each time lasting several days before my eyes would return to some sort of normal—a little faster if I used some of Adelaide’s leftover steroids. Was taking my dead daughter’s prescription medications a responsible decision? Absolutely not. Did it help? Sure did.
As obvious as it may seem in hindsight, it took me months to realize this was all provoked by my grief and not some ill-timed skin care blunder or new sporadically occurring allergy. But knowing that I hadn’t somehow brought it on myself helped. More importantly, though, it pointed me in the right direction: toward a specialist who could do something about it.
Another fun fact: the physical effects from grief are more likely to exacerbate pre-existing conditions. For me, that was skin sensitivity and allergies. With the help of an allergist, I was finally able to get control of these reactions; however, even to this day, if I don’t take the right combination of medications, I can feel a burning itch on my eyelids. And I wasn’t able to find that correct combination before the inflammation response forever changed the shape of my eyes—one now opens a bit less than the other.
These enduring physical effects are just as legitimate and grief-induced as the emotional ones. They are not in our heads and they are not our fault. In fact, as heavy as grief can be, it makes perfect sense that our minds would need our bodies to share the load. Give yourself just as many gold stars for surviving grief’s physical effects as you do its emotional ones. And remember that when the world comes calling—your boss, a parent, your child, and they need an email reply, an errand, or breakfast—all you need to do is keep going. Keep surviving one inchstone at a time. Low-hanging fruit is the bar. On better days, we can reach for those higher branches—and one day, you will shock yourself by grasping them.
One day, maybe not today, but someday.
Reprinted with permission from Normal Broken: The Grief Companion for When It’s Time to Heal but You’re Not Sure You Want To by Kelly Cervantes (BenBella Books, 2023)
