I grew up in a large family spread across generations
alongside the children of my first cousins and toward the end of my immediate
family, but chronologically almost in the middle. My baby sister, the child of my parents’
midlife, was born into a very different family than the one I had grown up in
to that point, and I, of course was born into a very different family than my
two oldest sisters who’d arrived less than twelve months apart many years
before me. We had the ‘big’ girls, the
‘middle’ girls, the ‘little’ girls, and then after a long pause – the
baby. By the time my youngest sister was
truly aware of the world and specific people around her some siblings were
already grown and gone, but I imagine there was always this mass of chaos and
noise of all of us huddled together in time as we were over a nine year span,
and then her, almost a second family of just one child and so very many
caregivers. She taught me some important
lessons very early in life that have carried me through some very difficult
times.
When she was about three years old, maybe four, she sat on
the second or third step of the front stairs of our home, near the front door, and away from all of
the activity that was going on at the back of the house to get a large dinner ready for
an extended family meal. My mother had
rushed home from work and was making marinara sauce and preparing a lasagna
while a famous family chocolate cake was baking in the oven. Older sisters were scrambling about to set a
table and clean up dishes during this prep.
And there the little one sat on the stairway with her chubby hands over
her ears.
“Why are you covering your ears?” I asked her, slowing down in my haste to get
upstairs and change out of a tomato stained top before guests arrived.
“She’s talking too much.”
The baby said, her large dark eyes peering up at me.
“Who?” As we were a
house of mostly women and just my father to represent the male of the species,
she was going to have to be more specific.
“Mommy. She talks and
talks when she gets home, and she runs around cleaning and cooking. We only have so many breaths. (this she
pronounced ‘breffs’) She’s using all of
hers up!”
I was probably eleven or twelve years old at the most, but I
looked down at her sweet little face, those big innocent eyes and round cheeks
all framed by her dark brown hair cut in a page boy style, and I could see how serious she was, that she
was frightened. From the vantage point
of my age today I could see how relatively young our mother was at that point
in her late 40s, but as a child I understood our parents were a little older
than many of the parents of my own friends, let alone of the baby’s little
friends. I wanted to reassure her that
our mother was not using up all of her breaths and that she would be around to
raise the baby. We would both be pretty
old ourselves before our mother stopped having breaths I was eager to assure
her. I believed that firmly at the time
as I had little experience of death and loss, was only peripherally aware of
the death of my older sister in infancy before I was born, and of my
grandfather’s death when I was 8 – but he was in his late 80s and that seemed
natural. There was an order to the
universe and I wanted to reassure my youngest sibling of this. But I think in
some ways she was born knowing things I either did not know or it was not in my
nature to dwell upon, and so in the midst of an active day with everyone we
loved all around us, I could mindlessly enjoying the moment, and she would sit
down, cover her ears and become overwhelmed by the reality that she could not make
things last as long as she needed them to last.
If I had the insight to see that then I don’t know what I
would have said or done differently, or if I could really have offered her the
comfort she needed in a world whose uncertainty we have to accept as a
given. I am glad that I slowed down and
embraced her and made her smile, if only for a little while. And I suppose in slowing down for a moment I
was able to absorb from what she told me, from how apparent her unease and fear
were to me, that the love we have right now, the breath we are blessed to take
in this tiny moment, are gifts beyond measure.
All these long years later I am still very impacted by how
my little sister saw things as a very small child. She used to pretend sometimes that our oldest
sister was her mother, and to this day they are extremely close. I cherished time spent playing with the baby
when she was little, as I grew up in a very large crowd, was toward the end of
it and did not have the kind of lavish playsets nor the expansive collection of
Barbies she enjoyed because she was born at the tail end of the family when my
parents had more money, and maybe also because they had less energy and time
and could surround her with her own insular village of playthings. I was born into the security that a crowd
provides, the natural companionability of a herd, where frolicking in the
backyard and climbing a tree seems infinitely more entertaining that sitting
inside and playing with toys. The baby
was born apart and was from a very young age aware of being a late in life
child. She seemed to instinctively
understand and perhaps even fixate on something I never contemplated in
childhood – that late in life meant closer to death.
Our father died while in his early 50s, and eerily perhaps
in his last summer on earth when I was home for the break after my first year
away at college, what I would hear at night as I settled into sleep in my
bedroom above my parents’ room, was his struggle to breathe, the whirring of the
machine that helped him get pure oxygen at night. He had congestive heart failure, had survived
two major heart attacks and it was suspected he’d had other smaller attacks
that he simply ignored. He had a
pacemaker, but bypass surgery was out of the question, and although I could not
conceptualize it and did not give it much thought as I lived my life from day
to day, he was living on borrowed time. That
was actually the term he’d use with a smile from time to time, ‘borrowed time’,
something gifted to him that didn’t actually belong to him by right. He viewed it as a gift, understood that he
could have just collapsed and died that day of the big heart attacks, when
instead he got more time. I expect there is also a shadow that comes
along with the bright light that is more time to live, because the things we
borrow we are really expected to give back, they are not ours to keep.
Those nights I was home the last summer of his life I
distinctly remember the comfort I derived from hearing that machine deliver
oxygen to him. He had to sleep slightly
elevated, and he really struggled to take any kind of a deep breath. But at night he slipped the mask over his
mouth and nose, reclined the hospital bed that had been placed in my parents’
bedroom, and he could rest. I would hear
my mother tending to him during the night, fretting over him, probably waking
him up sometimes. Without any drama in
his voice at all, he had once described to me that he imagined when the end
came it would be like drowning, that he carried a lot of fluid in his chest
already and it was very constricting. “But
today,” he said, “today is great.” And
he seemed great. Not physically, of
course. He was a man who carried the
weight of the world effortlessly on his back year after year to support a
family of 9, teaching and inspiring junior high school students day in and day
out – year after year, working a second job always at his ‘cigar store’
downtown to ensure that ends always met – especially when he had as many as three
children in college at a time. I know he
was racked with fear at times in that final year, over death, over the security
of his large family, his obligations and all he would leave behind and all he
would miss going forward – but he didn’t ever let on and he didn’t let them
overwhelm him in any way.
The last time I saw him alive he and my mother visited my
older sister and me at college. The
elevator in my dorm was broken and I lived on the third floor. He struggled into my room gasping audibly
four or five minutes after my mother had arrived. She look tired too, and perhaps more shadowed
by his situation than he was as she would be the one to go on with all of those
obligations and responsibilities, and without him. She fussed at him though over how long it
took him to get up here especially since we were just going to have to head
back down to go out to lunch, a ritual she adhered to on all visits with
us. He chuckled, sat on the end of my
narrow dorm room bed and through his deep gasps reminded her that he now had
only three speeds – ‘slow, slower and slowest’.
When I left them that afternoon before they drove off to head back home,
I leaned into each of their windows to kiss them goodbye. Mom was driving and she had placed her hand
over his on the console between them. He
slipped me a fifty dollar bill to cover my own and my sister’s phone bills
(which would not have come to half that amount) and sternly shook his head at
me when I tried to refuse it. I felt his
kiss against my left cheek as his right palm patted my right cheek twice. I moved my head slowly out of the open car
window and could not have understood that the warm breath I felt as I pulled
away from him would be one of his last.
We only have so many breaths, the baby had advised me – foreshadowing
her own lifelong struggle with loss –and how I would come to understand that
last moment with my father.
I don’t think my father died fretting over the struggle to
breathe. Quite to the contrary, he was
laughing robustly, enjoying a very good time.
He had taken my oldest sister and the baby with him, along with his
oldest grandson – who grew up more like a brother to the baby than a nephew –
to the birthday party of my father’s lifelong friend. The party was in his friend’s pizza
parlor. It was almost a year to the day
after the heart attacks had felled him, and my father was enjoying a cold beer,
a luxury on his restricted diet, a slice of pepperoni, and a good joke with one
of his oldest friends. He was seated at
the bar as it was related to me, and he leaned toward my oldest sister and
said, “this has been a really great day.”
And then the collapsed.
While losing your father is traumatic on some level for
everyone, for my oldest sister, there was some peace in the way it
happened. She was able to look back on it
after the initial trauma, the attempts to revive him, the hopeless seventy-two
hour hospitalization on life support with his brain already gone as we all
assembled to say goodbye – and she had that moment, that twinkle in his eye,
that smile on his face to remember. Not
so for the baby. She was still a child,
and she lived at home and had tried to go about her normal life in an emptying
nest with all of the older siblings away at school or grown and gone. I don’t think a lot of people would call age
54 late in life, but it was late in life to my dad as he never got past that
age, and the baby spent the rest of her growing up years alone with our mother,
counting her breaths.
It was my baby sister I thought of years later when my
husband and I stood beside our oldest son’s hospital bed keeping our vigil,
hoping he would get better and be able to come home. On the evening when we were told things were
very grave and we’d have to speak with the doctor in the morning about next
steps, my husband leaned down to kiss our baby and he placed two of his fingers
over our son’s chest, pressing very gently.
He whispered, like a prayer, “you have to breathe.” It hadn’t seemed possible to me that this
sweet little baby might have a very limited number of breaths in his life. I wasn’t even at a point where I could think
about whether or not that was fair, it just hadn’t seemed in the realm of
possible.
During the night I thought about my sister’s concern that my
mother was using up her breaths – that the fuss of always having to take care
of so many people, and wanting everything to be done right, over-reacting at
times as we sometimes do under stress – was needlessly using up our
breaths. I thought about my son, about
hearing his first, robust cry, watching with awe as he wailed and choked in
huge breaths the way newborn babies do when released from the womb. Mostly he was peaceful though, not sucking in
big breaths, not squandering his share of the world’s oxygen. I fell asleep briefly, just thinking about
him being, trying to will him forward. Hours
later when we held him for the last time, as he moved gently from this world
into the next, I didn’t hear his last breath.
It wasn’t a gasp and it wasn’t audible, but I knew it had occurred. What I did hear, and feel, was my husband and
I both suddenly becoming breathless, gasping as our chests felt emptied out. The oxygen was everywhere, more than either
of us would ever need, but no more for this little boy - and there wasn’t time
to think about fairness. It was just the
way things were – we hadn’t used ours up yet and we would have to go on.
Now I am at a place much later in my own life but just a
blip in the overall continuum. I have
endured loss and illness and uncertainty and wonder and lightness and profound
joy. I’ve raised a family and made deals
with God along the way when things looked uncertain to give me a little more
time here and there so I could see those children growing up, and He has been
very generous not just with the increments along the way – but with the
fullness of every moment. I don’t worry
about leaving things unfinished so much as I used to, because I understand my
life is both unique and inconsequential at the same time. I’ve seen the order of the universe turned on
its head for no apparent rhyme or reason and understand that to ascribe greater
value to one life than to another is worse than folly or vanity. We all share a right to human dignity and we
all have the capacity to live well and fully if that is what unfolds for
us. I can see that now. I’m at what is for many a familiar vantage
point at this stage in my own life, sandwiched between caring for an aging
parent and still trying to get my own children safely into adulthood for their
lives to take shape. I am reminded of
those acrobats I used to see at the circus not just standing on the wire but
riding a bicycle across it while juggling - how you’d think they were so
daring, crazy almost to be challenging themselves on so many levels at once
especially since they would not really know about the soundness of their net
until they actually fell. Life is so
much like that - whether you walk slowly and timidly or dare to ride the bike
while juggling. We don’t know what we
are or aren’t capable of, and we don’t know when we will fall or how that will
feel.
I go most every Saturday and Sunday to visit my mother in
the assisted living facility where she lives.
Alongside my younger sister, not the baby, who has been my mother’s rock
and her primary caregiver over the last fifteen years as Alzheimer’s disease
has consumed my mother’s former life, I help feed mom her lunch. We used to do that together in the main
gathering room in the Alzheimer’s section where all of the residents meet for
meals. Mom would sit in her chair or a
wheelchair away from the main tables and my sister and I would visit with her
and feed her patiently. We knew all of
the other residents, at least as they are now, and we talked to them or they to
us. They became an extended family of
sorts as our own mother has been largely silent in the two years now that she’s
been there. She has curled up and become
smaller even than she was just a year ago.
She retreats into a place we cannot venture and we gently cajole her
out. She returns our smiles, looks as
though she has something to say from time to time, and then slips back again to
where she was.
Most recently our mother has been confined to her room most
of the time, and for all of her meals.
There is already an isolation going on in her mind, in her ability to
emerge and communicate or even connect with the world and people around her –
and it is exacerbated by the confinement.
The walls of her room that face her are populated with large photos of
her children and grandchildren and great grandchildren- mostly as babies and
toddlers. They are suspended in time
just as she is – little round faces caught in mid-smile for the duration. Years ago she used to talk to those pictures
in her home, coo to them. Now when a photo catches her eye she does
smile – but more often it is the way light dapples in from the blinds and
dances across the wall that seems to captivate her. Often she seems to be looking at some place
just beyond my sister and me, and she seems so compelled to whoever or whatever
it is, and we both wonder out loud if it is someone we know, if they are
calling to her.
She struggles to chew and swallow now. Drinking, even from a straw, is something she
has to be reminded of how to do over and over again in a single sitting. I want to pick her up and cradle her the way
she used to cradle me, but she is frail and I also worry it will frighten
her. She is certainly light enough that
I could do it, but I understand there are boundaries now and that would not be
acceptable. She appears old and small
and shrunken into herself and at the very same time she seems just like my
mother. She had a birthday in March,
turned 88, and has now lived longer than her parents or any of her brothers or
sisters. She was the baby of her family
too, like my little sister, the child born into her parents’ midlife. When she sleeps sometimes I lean in close to
hear and feel her breathing, and I can see both the child she once was and the
woman wearied by time and loss and the ravages of a disease that has claimed
her precious memories. Despite it all, she seems happy, welcoming, at
peace. I don’t know what the coming
weeks or months may hold for her, but I know once she can’t eat and drink the
road begins to narrow markedly.
When I was a teenager and a young adult my mom often slept
out in our living room, in a reclining chair.
It started because she was waiting up for children to come home on the
weekends, and then maybe because there were so many children and so many
weekends, it just seemed like more often than not that was where she fell
asleep – not down the hall in her room.
She sometimes had very vivid bad dreams in that chair. Sometimes she woke up gasping for air as she’d
forgotten to breathe in her sleep for a moment.
There was one night she was talking aloud in her sleep and we could hear
from upstairs and were terrified. In
her dream my father had already been overpowered by an intruder and the
intruder was now coming after our mother.
Four of us were upstairs and two were already calling 911, thinking this
was real, by the time one of my sisters made it down the stairs (my younger
sister, mom’s protector) and mom awakened and we realized it was just a dream,
no one had come to take our parents in the night.
Her life right now is not like one of those vivid,
frightening dreams. Death, loss, always
terrified my mother. The thought of separation and loss so overwhelmed her at
times that she could not fully enjoy the moment she was in, the love that was
surrounding her. Now it is
different. I think the love she is
surrounded by is what is most present for her.
She may not know our names or what day it is, but she can feel the
presence of love and comfort. It is a
blessing that in a world so constricted by a disease that wipes away memory,
feelings remain and that child with no experience yet of loss, unafraid to love
and reach out emerges.
It is a challenge and a struggle when some of the things
that pass from memory are the basics, like chewing and swallowing, and eventually
breathing, but a blessing alongside it is that pain is erased, uncertainty,
mourning – there is just this moment until there are no more moments. I know my mother knows and feels love, and
where there is love there is dignity, in every moment that she has.
If I could go back to that evening on the front stairs of
our house when my sister was just a very small child, our baby, covering her
ears in distress, worrying over our mother using up all of her breaths and
being gone, I would have the wisdom to give the only comfort that there really
is. We can’t count how many breaths
we’ll get – a week, a month, fifty-four years’ worth, eighty-eight. We can’t fret over breaths we’ve already
squandered or whether we’ll be robbed of any.
We just take them one at a time and we fill them with as much love and
purpose as we can. Life is going to
hurt, sometimes it will be excruciating – but mostly it is good, exquisite,
vivid, and as painful as loss is - who we had and what we cherished is what
endures. So we just have to be and be
not afraid.
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