Time has been so oddly compressed - and expanded - since covid. My recall of memories and timelines is so altered. The last four years contain events that may have happened yesterday or they may have happened 24 months ago, and my perception is the same for both. Time just doesn’t feel the way it used to.
There are, of course, extenuating circumstances that may have nothing to do with covid. It may well be that approaching and then jumping over the threshold of 40 just messes with your internal chronometer, and that perhaps everyone feels this way about time by this stage in life. It could also be grief and trauma contributing to the odd sense of inertia. But the more people I’ve wondered over this phenomena with, the more I’m convinced it is something we’ve experienced collectively.
All that to say, I don’t know exactly where this story begins. Maybe it was with a single hip replacement in 2019. Perhaps it was the second hip replacement in 2021. A failed back surgery in 2022. A shoulder injury later that year. A frightening fall and a painful ankle surgery last summer. All of these data points vie for potential starting points for the beginning of the end, but none stands out as the official starting line for when my mom got sick.
I tend to see the earlier complaints and injuries now as symptoms of her eventual diagnosis, but the plain fact is we didn’t know for a long time that she was dying, and once we knew for sure, well, she wasn't so sure.
She was, in fact, telling her hospice nurse about a week before her death that she was sure she didn’t actually have ALS, that there had been some mistake, that perhaps another condition was mimicking the cruel, debilitating loss of bodily autonomy that ate away at her, little by little, until, at last satiated, it could take nothing more.
She was only 67.
My mom’s name was Mary, and she loved Our Lady deeply. She wasn’t perfect, but she did love the rosary, and God seemed to fill her life with a lot of graces through the conduit of those beads. I have more to say about the spiritual side of her suffering and about her beautiful death, if such a thing can be said of that final enemy, but not before my very human brain processes the magnitude of suffering that our family endured.
Losing mom is inextricably bound up with losing Nicholas, for me. I remember being so crushed and so alone in my pain during the long December following his demise, wondering and worrying about his tiny body deteriorating inside of mine, not comprehending why my parents were mysteriously unable to accompany me in any way. I came to realize the nature of my mother’s circumstances before any of my siblings or extended family members did, largely due to their lack of response to my own suffering. Already at max capacity, they had little left to offer.
In so many ways, the past year and a half would never have “worked” the way it did, had we brought twins home from that NICU. My children might not have been enrolled back in school, for one. And of course, there is the super obvious reality of how different life would have been caring for two newborns, two infants, two toddlers … the demand would have been incredible.
Instead, I was entrusted with a single, placid, and well-rested baby who slept (and still sleeps) a solid 12 hours a night, and I had 6 kids in school for the greater part of each week, which freed me up to spend unprecedented amounts of time with my parents over the course of the past school year.
My siblings and I settled into a routine of visits, trying to cover the weekdays so that there would be no more than two or three days between visitors to our parents’ home. As mom got sicker and her needs intensified, we tried to fill the gaps around home health and hospice by making sure one of us was there every day. We almost succeeded, but the pace was punishing.
ALS is a devastating disease, more cruel in what it takes than in the symptoms it gives. There is a certain amount of physical pain associated with not moving, not being able to breathe, to swallow, etc., but the greatest pain that I observed in my mother was the loss of her ability to walk, to move, to sit up, and eventually, to breathe. The psychic toll of being slowly imprisoned inside of your own body is immense. She lived John 21:18 in her final weeks and months, her suffering making the scripture come alive,
“Truly, truly, I say to you, when you were young, you used to dress yourself and walk wherever you wanted, but when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go.”
She was very brave, and very human. She was difficult to care for, and it was a joy to care for her. Most visits I would spend the 50 minute drive back to Denver bawling my eyes out, unable to process what was happening except through copious tears and pathologically repetitive exclamations of disbelief to my sister.
I would usually pull it together in time for car line, and if not, large sunglasses sufficed to cover my tracks. I would creep into the lineup of minivans and not-so-mini-vans at school, trying not to make prolonged eye contact with any one teacher in the lineup lest someone decide now was an opportune time to come to my window and discuss little so-and-so’s lack of follow through on spelling homework.
God bless Dave, but I think I cried myself to sleep a hundred times over the past 12 months. Probably a dozen times in the last month alone. I know that my nervous system is tweaked out beyond belief, but what I haven’t quite figured out is how to calm it down.
The week before school let out, I was praying one morning in the relatively silence of the 6 o’clock hour and just telling the Lord, “we can’t keep doing this, what are we going to do with the kids next week after school is done?”
His answer was quiet but clear: it won’t be necessary.
On Mother’s Day, with a week of classes remaining, three of us sisters were able to spend part of the day with her. She was more talkative and more “there” then she had been for over a month, and I left that visit thinking we had a long, hot summer of logistics ahead of us. A week later, my dad texted us late Sunday evening: “Pray. Mom is non-responsive.”
An hour later, five out of the seven of us were at her bedside. By 11 am the next morning, all seven of us were there with her, including my little sister with her eight-day-old baby, and my youngest brother who’d found a redeye and made it door to door from Brooklyn to Denver in under six hours.
She did regain consciousness early that morning and was able to respond to some of what was said. She made a few hilarious comments, a few that were poignant, and a few that didn't make sense. Before she lapsed back into her unresponsive state, she grabbed my hand and brought it to her lips and kissed it. My eyes filled with tears then as they do at the memory of it now.
I think she was saying thank you. I think she was telling me she saw the sacrifices of the last year.
The weeks since her death have been surreal, strange, and filled with compassionate support from wonderful friends. My best friend flew out to spend the days before and after the funeral with me, sitting in the hot pew six months pregnant helping to wrangle my kids while I gave the eulogy. Another dear friend opened her home to us, hosting our extended family for a huge reception following the Mass. My wonderful in-laws took our little kids home so we could attend the burial unhindered. We have been so carried.
And yet I remain devastated. The pain lessons with each week, and I have great confidence in her eternal destination. Still, the aftermath. Losing a mother at any age is, I imagine, a wound of great depth.
She leaves behind 23 grandchildren on earth. I like to think she is enjoying the four that none of us have gotten to meet yet. I like to think she can be a better mother - and grandmother - from her new vantage point. But that can feel cold comfort on nights where I lie in bed wracked by anxiety, unable to sleep, or when I happen suddenly upon a pocket of grief, craftily hidden within an ordinary word, a line from a song, a casual exchange with a stranger.
Grief is almost funny in the way it shape shifts, sometimes disappearing from places you’d most expect to find it, only to reappear in line at the grocery store, packing enough of a punch to cause you to choke back an unwelcome sob, throat thick with the awkwardness of the moment and the timing.
When I have time to grieve, and I feel the need to grieve, I do. I’ve learned it unwise and foolish and, ultimately, expensive, to indefinitely defer the thing.
Still, I cannot seem to purge it from my body. My entire nervous system feels as taut as a guitar string, and it just takes the least damn thing to set it thrumming.
My poor kids have carried their own share of burdens this year, God knows, and now they’re contending with whatever developmental stage is associated with eating off of paper plates for an indeterminate amount of time and watching mom slide down the wall to sit on the kitchen floor weeping, again.
We have learned well, this year, that this world is not our home. But oh, how death still stings. I pray in a new way for the grieving, the sorrowful, and those left in the lonely aftermath of loss. I have an incredible husband and a great community and a huge family, but the pain is still just breathtaking at moments.
In your charity, please pray for the repose of my mother’s soul, and for my dad to be consoled and strengthened as he finds his footing in this new world he didn’t ask to visit, let alone inhabit. High school sweethearts, they were together 50 years this spring, married for 44. He misses her so deeply.
We all do.
She passed on the feast of Mary, Mother of the Church. We buried her out of St. Mary’s, the parish that I and most of my siblings belong to. Her death was beautifully provided for, and yet there is such an aching negative space left where she should be.
A dozen times a week I move for my phone to call, to text, to fire off a quick question. Because of the way she processed her circumstances, we didn’t get to spend much time reflecting on her coming demise, didn’t get to say things I wish we had, hear stories I’d have loved to hear. I didn’t get to talk over future stages and scenarios I would have loved to have her advice on … and yet, I do have confidence that she hears me still when I talk to her, and that perhaps we are at last in a place where we fully understand one another.
This prayer hits a little differently these days, but Mother Mary, be a mother to me now.
Thanks for allowing us to process alongside you, Jenny. Your heart is big and beautiful and it makes sense that it’s absolutely breaking. Praying for all your intentions.
Thank you for sharing with us. So many prayers for you and your family! 🙏🏼