after a 2.5 year fight with a liver disease with the complicated name of, biliary atresia, that I could
pronounce with clarity as a kindergartner.
It’s amazing that baby girl ever learned to walk, because so many pictures and memories involve her
plopped in a lap. Nana’s lap, Aunt Carol’s lap, our mother’s lap . . . or being toted about by a bigger
cousin. But walk she did. She ran and she sang and she was a part of us.
After her death we clung to her possessions like talismans. Even now a set of tiny booties sits in a box
of mementos in my bedroom next to a rock I found in middle school and some snapshots of my
parents in their 20s. A battered teddy bear waits in a spare room at our mother’s home even though
Katie never got a chance to live there.
If you were still here Katie what would your laugh sound like? Would you be the fun aunt sending our
kids ridiculous memes making fun of your Gen-X siblings in their decrepitude? Would you be the only
organized sibling, or would you be as much of a hot mess as the rest of us? You didn’t live long enough
for hobbies, or a prom dress or a favorite Ramona Quimby book. You did live long enough to touch the
hearts of everyone who knew you.
While thinking about writing this I, in true librarian fashion, did a deep dive in the archives of our
hometown newspaper. There I unearthed dozens of articles featuring or mentioning my sister. While I
knew there had been a huge community backing for funding Katie’s medical expenses I had no idea
how widespread it truly was. Events large and small raised an astounding amount of money in just a
few months. There were beautiful baby contests and antique car shows. Students at my elementary
school collected soup labels. There were oldies nights, and dance marathons, and rock-a-thons. Charity
runs, and hospital auxiliary donations raised thousands, and of course there was that classic central
Pennsylvanian pork & sauerkraut dinner. This fundraising push began not just because of a community
wellspring of goodwill, but because Katie’s father had lost his job, and consequently her health insurance
coverage, and while he’d begun a new business her precarious health made her uninsurable.
There were so many articles about Katie that I finally stopped printing them when I’d refilled the paper
twice and started to run out of ink. There were well meant editorials lionizing her fight that have not aged
very well, and there are a surprising number of newspaper references to Katie in the years that followed
it. After her death remaining funds were given to other children awaiting a transplant. While Katie’s
health care needs were eventually funded by the state, one can’t help but see startling parallels between
her situation more than 35 years ago and the constant presence of “Go Fund Me” campaigns for the sick
that dot our social media feeds today. Access to healthcare is a human right, and should be funded as
such here in the United States, as it is in virtually every other industrialized nation in the world.
The glaring omission I'm surprised to notice while poring over these documents is that we don’t exist.
Katie exists, our mother and Katie’s father are there, but the only reference to her siblings is her obituary,
where we are incorrectly listed as “step-siblings.” Technically we’re half-siblings, but I don’t count my
family members in fractions as a general rule. I can only assume this was a deliberate editorial decision
by the newspaper staff to sanitize a blended family, but perhaps that’s an unfair assumption. Our older
sister and I have only ever referred to Katie as “our sister” and we generally don’t let her father’s name
pass our lips without hissing. Katie’s father and my mother divorced within 2 years or so of her death,
none of us have seen hide nor hair of him in over 30 years. He married the kindergarten teacher whose
class I attended the year Katie was most ill, but that’s a story for another time. Oddly I’m not sure I’ve
ever even heard our brother utter her name. Families are strange and complicated as often as they
are wonderful I guess.
I remember my sister’s voice clearly, but I know that memory is likely only my recollection of a fuzzy
VHS recording we watched over and over in which Katie, aged 2 years, plays with a set of plastic keys,
and her melodic toddler voice chants out “red one, yellow one, blue one.” Would she like to read like me,
or binge watch romance television like our big sister? Would she have a wild haircut as a teenager, and
sneak a first kiss at a high school football game? Would she hunt and fish and still live in small town PA,
or would she have gotten the heck out of there and live somewhere exotic like I don’t know
. . . anywhere else?
I have to wonder how much of my own hesitation to emerge back into the land of other people’s germs
these past 2 years has been due to intrinsic knowledge of what it means to live with an
immune-suppressed family member? How much has been because I remember the terror and shame of
being the healthy sibling who accidentally exposed a floor of transplant kids to the chickenpox? How
much has been because I know what it looks like when a parent sits in a hospital room with their child for
months and then eventually comes home empty handed? For what it’s worth the reaction of our older
siblings to the pandemic has been a lot closer to YOLO than mine,, so maybe it’s personality and not life
experiences, but who knows?
But I have other questions too. How many people did Katie’s life and death convince to become organ
donors? How many lives did that save? How many parents held their kids a little tighter? Part of why we
rarely speak of her is that we don’t need to. That loss may not be something we say out loud, or even
think about every day, but it is painted onto our identities as surely as our curly hair or dimples. I
remember years on end where we’d periodically wonder “how old is Katie now?” What we meant was
“does a soul age in heaven?” Has she grown with us and laughed at our foibles from above, or is she
frozen forever that patient toddler who now sits on the laps of all the relatives who finally grew old and
joined her?
What does she remember? What do *you* remember from when you were 2? What about the year you
were 6 (the age I was at Katie’s death), how about 13 or 15 (the ages of our older siblings)? I don’t
remember much, but here's some of what I do. I remember boldly stepping up the concrete steps of a
reclusive neighbor’s porch with my older sister, so we could report that our baby had arrived, on our
mother’s birthday, and her name was Kathryn Anne. I remember wheelchair races down hospital halls,
and arranging “little people” on worn wooden floors, and I remember that we loved you. I remember the
Christmas Santa brought a Fisher-Price train, and the carnival that was held as a celebration of you,
and I remember that we loved you. I remember the jealousy I felt at the nonstop and much deserved
attention you received, and feeling displaced and left out, and I remember that we loved you. I
remember the day we took a picture in the tulips growing outside the hospital, and I remember
daydreaming about you coming back long after you left us, and I remember that we loved you.
Wherever you are Katie, I have to believe you are bathed in love and light. Happy birthday.
As a transplant recipient Katie was the 99th child to receive a liver (and then 2 more) in the groundbreaking liver transplant program at Children's Hospital of Pittsburgh. For more information about the gift of organ donation please visit:
