"I'll be how old by then?"
As Lindsay neared her 21st birthday, a milestone which many medical professionals had told us was probably the upper limit of her age expectancy, it occurred to me that I wasn’t sure what it meant now that she had arrived. Quite frankly, I didn’t expect that she would live this long so as she neared the day I thought I’d check in with her pediatric neurologist.
As Lindsay neared her 21st birthday, a milestone which many medical professionals had told us was probably the upper limit of her age expectancy, it occurred to me that I wasn’t sure what it meant now that she had arrived. Quite frankly, I didn’t expect that she would live this long so as she neared the day I thought I’d check in with her pediatric neurologist.
“Doc, we haven’t talked about
Lindsay’s life expectancy for a while. What do you think?”
“Well, she’s pretty healthy and
I don’t see any reason why she won’t live to a typical age.”
“You mean a typical lifespan for someone with her
condition, right?”
“No, I mean if the average
American woman is expected to live to about 80 years old, maybe Lindsay’s would
be 78.”
“I’ll be how old by then?!?”
❖
Life’s reality for parents of a
child with disabilities is that the child that was once imagined is not the one
that arrived. What arrives with this infant is sorrow and grief when it’s
discovered that the child has physical or intellectual disabilities. There is
grieving for the lost child.
“Will she know that she’s
different?” I recall asking that when Lindsay was born and the full extent of
her conditions and disabilities was being unveiled. Will she understand when
other kids stare and point and laugh? Will I understand when a parent takes
their young child aside and whispers, “It’s not polite to stare”? Will others call
her names and tease her?
The words I heard were words of loss.
“She’ll never roll over in her
crib,” they said. She passed that hurdle. “She’ll never walk,” they said. It
took her 9 years, but she overcame that prediction. “She’ll never know you as
her parents,” they said. Passed that one.
She’ll never ride a bike. True.
She’ll never read or write. True. She’ll never learn to swim. True. She’ll
never drive a car. She’ll never live on her own. She’ll never attend college.
She’ll never get married. She’ll never have children. She’ll never cook a meal
or read a book or laugh at a joke or know romance. She’ll never, she’ll never,
she’ll never. All true.
And at every missed milestone,
there is sorrow.
The professionals call it
“nonfinite loss and grief,” repeated reminders of missed achievements compared
to what parents hope and dream and anticipate for a typical child. These
moments can destroy a parent’s imaginings of what their child and the world
should be like so that the grief continues and is revisited at each perceived
loss.
When an elderly parent dies,
say, one can understand it as an anticipated and acceptable, if painful, life
moment so that the grief at that loss will dissipate and life moves forward.
Even in the loss that might come with a sudden trauma, there is usually a
resolution and the grief in time subsides. But with nonfinite loss there is no
reversal and the only coping for a parent comes through building emotional
resilience.[i]
❖
Lindsay spent her 31st
birthday in the hospital. Holy Week began with Seizure Monday and ended with
Resurrection Sunday.
Since Day 2, Lindsay has had a
seizure disorder. There have been moments of seizure-ness in her lifetime, but
mostly they are controlled by medicine. This year on Monday, April 15, while I
was last-minute filing my federal tax return, a nasty, full-body seizure broke
through after a mostly seizure-free decade. Tuesday morning arrived with
lethargy and a non-functioning Lindsay so to the hospital we went. By Tuesday
night the neurologists discovered that she was in status epilepticus, a continuous stream of seizures in her
brain which were not showing physically. She lay in bed motionless and fragile.
By Wednesday of this holiest week the seizures had, with the help of new
medicine, mostly ceased according to the subdued EEG peaks and valleys. But
Lindsay lay there still, functionless, asleep and unresponsive.
“Have you thought about,” I could see only the neurologist’s
eyes because of the prophylactic infection mask, “advance directives.
What you want to do in case she gets worse?”
Words of yet another nonfinite loss.
Of course, I had—for 31 years, I have. Hasn’t every parent
at some point thought about it? What if my child is near death? What if all
seems hopeless? I I told him my “I’ll be how old by then!?!?” story.
In this lingering potential loss a persistent question arose
again: Who am I if not Lindsay’s dad?
Did I have an answer to the doctor’s question? Did I have a
fully decided decision? No.
❖
By Thursday I was asking the Psalmist’s question “How long must I bear pain in my soul, and have sorrow in my heart all day long?” [Psalm 13:2]. I was pleading like Job, "How long will you say these things, and the words of your mouth be a great wind? … How long will you torment me and crush me with words?” [Job 8:2; 19:2]
How long, O Lord?
The nights were tedious, the
foldout chair-bed unwelcoming, the food tolerable, the care was world class.
On Friday—Good Friday when I am
headed with many Jesus-followers to the cross and tomb—Lindsay was alive. Alert
and sitting up, crossed legs like only Lindsay can do, tapping her chest with
her “You better feed me!” sign. The tomb was full, but Lindsay was back.
At this resurrection moment in
Lindsay’s life I stood looking at her wildly sprawling hair glopped-up with the
goo that attached her EEG leads, at the IV tube poked into her left
gauze-wrapped arm, at the Band-Aid on the back of her right hand where repeated
bloodwork was drawn, and at the hated, unflattering hospital gown. I let down
the side rail, sat on her bed, and leaned in.
“Here we are again, Linds,” I
thought back to the intimate moment I had with her the day she was born, “You
and me, Linds. I’m here for you no matter what. We’re in this together. I love
you.”
We are alive again ... still.
© Copyright 2019
James F. McIntire
All rights reserved.
[i]
Through
Loss Elizabeth J. Bruce, Cynthia L. Schultz. ACER Press.
Australian Council for Education Research, 2004 and Bruce, E. J., &
Schultz, C. L. (2001) “Nonfinite loss and grief: A psychoeducational approach.”
Baltimore, MD, US: Paul H Brookes Publishing.
