Face-makers: Isabella and Mary
UPDATE: Mary is in a holding
pattern. In fact, we’re all in limbo, not quite sure of the next move.
Still unable to walk, still unable to
remember anything for more than ten minutes, still unable to feed herself,
still needing constant care – two doctors in the past two months (her extremely
understanding and compassionate GP and her wonderful physiatrist) have said
there is little chance that things will change now for Mary.
Most of any improvement for an individual
with severe anoxic brain injury comes within the first two years. It will be
six years since Mary’s brain injury on April 8, 2009.
I reel when I think of the amount of time
that has passed.
Mary has had five more hyperbaric oxygen
chamber sessions, bringing the total to 45 since August. Have they helped, or have they simply been a
desperate ploy on our part to see change? For every ever-so-slight improvement,
there are many days when we see her completely and utterly defeated, frustrated that
she cannot do what she would like her body to do.
Despite the defective memory, she still
communicates using her alphabet board. (We’re a year into an 18-month waiting
list for a light box.) She can do the crossword puzzles with help and gets most
of the clues right. Chunks of memory have risen to the top and she will ask
where her engagement ring is, (in storage), or recall things that occurred
leading up to the injury. She still surprises us sometimes.
Mary had an uproarious laugh and an
enormous smile; she still gets the humour and innuendo we use to survive and
manages an odd-sounding laugh.
Her father, (who could be
described as somewhat absent-minded), has a habit of leaving things on top of
his SUV and driving off, forgetting he has put anything there. Around
Christmas, after we’d stopped for a light, a man came running out into the
intersection yelling, “Hey man,” and waving his arms. Slightly alarmed, Paul
yelled back, “No thanks,” which makes no sense. (Unless you know Paul.)
“No, no,” the guy said, coming up to the
car and reaching up to fetch a full two-litre container of windscreen washer
fluid from the car roof. “Surely you’ll need this?”
We’d travelled about 12 city blocks like this
with two dogs, Bob, (Mary’s partner), and our singing granddaughter Isabella in
the backseat.
When told the story, Mary laughed so hard
she doubled over. It was the best laugh I’d got out of her since the last time
her dad left his coffee/phone/wallet on the car roof and driven off.
Brain injury or not, her sense of humour
is still very much there.
Happier days: Mary with her twin brother, Alastair, on her wedding day.
But it isn’t getting easier for any of
us. Money aside, the physical work of having to make sure she is well-supplied,
of getting her to appointments, of being guardians instead of parents, of
having to worry about the consequences of various minor and major complications
– is becoming too much. It is affecting us in many ways, straining relationships
and making our house a stressful place to live.
Long-term care noises have been made
and we have let it be known to Mary’s caseworker this is the road we must now start
to consider. It has been a hellish decision, but we’ve given absolutely
everything we’ve got – in every way – to try to get Mary back. If an elephant
could do somersaults, we’ve done the equivalent of that – and more. We
promised, as she lay in ICU, pregnant and struggling to come out of the coma,
that we would do everything in our power. And we have done that. We can’t do
anymore.
The decision is the culmination of
years of lawyering and struggling to get compensation for Mary, which we
haven’t been able to do, despite the College of Physicians and Surgeons finding
it was pretty much the hospital’s fault that Mary is the way she is now.
Nothing has worked. No one, it seems,
wanted to go up against a renowned and well-liked neurosurgeon. (It was a
resident, not the neurosurgeon, who worked with Mary that night. He did not
consult with this neurosurgeon, nor did he check with the senior resident after
Mary fell on the floor, post-op. The College finding stated this second year
resident did NOT do enough to ensure Mary’s care that night.) Bare bones
protocol, which was carried out, trumps common sense. Protocol is all an expert
witness sees.
We wrote to the hospital CEO last fall
and got a letter of apology. That letter was also sent to every board member
and a few weeks ago we received a letter from the board chair, as well.
“ … I would like to express, on behalf of
all Board members, our deepest regret for what has happened to your daughter,
Mary. As we read your letter, it is not lost on us that this has had a
significant impact on your entire family.”
The CEO wanted to meet with us to discuss
improvements in care the hospital has made since Mary’s fall. We initially
thought we could do it. We were so sure we could do it.
But prior to Christmas, we ran into a
couple of health officials who looked after Mary during some of the darkest
times in those early chaotic and traumatic days. They were pleasant. We were pleasant. But that night,
after I finally got to sleep, I was overcome with PTSD symptoms, something I
thought I’d finally put behind me.
So no meeting, although the door is open.
Who knows? As the frigid winter turns to
spring, as more time passes, we will, perhaps, be able to attend that meeting
and hear about all the wonderful changes they have put in place – programs and
quality care practices that should have been in place when our beautiful
daughter was in their care; practices that would have ensured her safety, given
her a normal life, let her continue her career, let Bob have his life partner,
Isabella her mom.
And perhaps as a parent, I wouldn’t be
endlessly advocating, writing letters, fighting health-care officials, pushing
buttons, getting angry.
However. It is what it is.
I’ve accepted the futility of it all.
Finally.
