FAMILY
UNDERTAKING
HUFFINGTON
03.03.13
COURTESY OF ALISON KIRK
Caroline and
her sister
Kate, who
also has the
terminal
NiemannPick disease.
Kate is now 11 and in a wheelchair. She was pulled out of
fourth grade a few months ago,
and has been under home hospice care. She can breathe on her own,
but is fed through a tube and has frequent seizures. She’s awake for only a
few hours each day.
Her condition isn’t as complicated
as Caroline’s. Her decline is almost
entirely neurological, and her death
will be akin to that of someone dying
of Alzheimer’s. She could live for a few
years or she could have a sudden seizure that would end her life.
The Kirks have purchased a plot next
to Caroline’s grave for Kate, but
have otherwise made few concrete plans for her death. They
don’t know what she will wear or
how she will look. It’s not time to plan for
that. She’s still alive. They do know that
she’ll die at home in the hands of her parents, hearing the same “I love yous” her
sister last heard. There will be no funeral
home taking her covered body away, and
no wake in a room she’s never seen.
“It’s a hard thing to have to say the
final goodbye to your child,” says Alison.
“But with Caroline, we made it as good
as it could be. I wouldn’t change
a thing when Kate’s time comes.”