To close Cora’s funeral we chose to sing the famous gospel
hymn, This Little Light of Mine. I’ve
been thinking about those words in the weeks and months since that day. From
the moment Cora was born, we were presented with very few true choices; none of
the good ones at least. But there was one choice I could make, and I made it a
couple of months into our journey: Cora was my little light, and I chose to let
her shine.
In the space since her death there is nothing to do but
remember. And in remembering, there is rehashing, reconsidering, doubting,
regretting, praising, being grateful, being filled with despair. And I can see that
as I meticulously comb over each memory I have, what I’m really trying to do is
manufacture more time. For all the ways that I feel Cora’s life was perfect,
exactly as it should have been, I will remain soulfully disappointed for the rest of my life that, no matter what
I do, I can’t create more time.
I’ve often questioned our decision to let her go, that
Thursday surrender when we changed our course from trying to heal Cora to
deciding that she had been through enough. I don’t doubt the decision itself.
When I look at the facts, the undeniable facts, things are rational and clear.
Our girl faced challenges that were beyond human power; they could not be
fixed, and they were piling up on each other and the pile became so overwhelmingly
large that it snuffed out all the hope. Throughout Cora's life and everything we went through,
we endured it because we lived with the hope that one day life would become easier
for Cora, we dreamed that the troubles would pass, we dreamed she would live.
And so when those two doctors we know, trust and love sat down with us on that
Thursday to say the hope was over, we surrendered easily and out of deep respect
for the girl we loved so fiercely.
But of course I rehash that decision every day. I toy with
it like a rubik’s cube, endlessly fiddling with it to try to make all the
squares line up, to see how it could have worked out otherwise – to end up in whatever universe would have allowed the chips to fall in the way I wanted them
to.
As a parent, your primary job is to take care of your
children. You’re handed these little beings, with really no one supervising,
and you’re tasked with growing them and showing them this beautiful life. I
know I loved her, and I know I showed her as much of life as I possibly could.
But to me, those eight and a half months will always be too short. I wanted
more.
Another thing that I do in the time since Cora has passed is replay the night of her death over and over in my head. Not to drown in morbid
misery, but because ironically, it was a time of great peace and comfort. There
was laughter in the room, the presence of dear friends, and the very clear
knowledge that this life here on earth is actually the much smaller part of
what’s going on in the spiritual world at large.
I could see that very clearly.
Cora walked us through that night, modeling grace,
acceptance, and profound love, just as she walked us through every day before.
With her in my arms it was impossible not to feel that the universe was a divinely
compassionate place, that all was exactly as it should be, and that I was loved
implicitly, exactly as I was. After she died and my friends and I all passed
her around, spreading that amazing feeling from one of us to another, long
after that, I held her naked little body on my chest like a koala. I put my
cheek on her head, one hand holding hers, and the other on her back, which
stayed very warm for quite a long time. I sat like that for hours.
It was one of the most beautiful experiences of my life.
When sadness hits me hard, I think of that. Of the peace
that washed my heart that night. The feeling that I had succeeded as a mom,
that I had lovingly shepherded that fierce little spiritual warrior through her
life. It didn’t look like what I expected or what I wanted. But I had this one
job, to love Cora through life, and I had started and finished that job well. What a thing to watch your child enter the world, and to
watch her leave. And to have an integral role in both.
In the world since Cora died I am left with many feelings,
too many feelings most of the time. But by far the biggest feeling is that of
great pride.
I’m so proud of you, Cora, for the way you changed the world
by changing, one at a time, the people around you. You showed me just how big
life is. How love is at the core of everything. How important it is that I try
to pass that love around to others, as much as I possibly can. How it’s the
inside of things and the heart of it all that make life worthwhile. Because you
were you – your beautiful and true self – I hardly noticed how sick you were.
Your body was such a small part of who you were and are.
How I wish you could be here with us still, yet somehow free
from pain and struggle, just lying on the bedroom floor next to Dominic and
Cosette, or dressing up with them for Halloween. They were Peter Pan and Wendy
Darling, and they desperately missed their Tinker Bell. Every experience, no
matter how joyful, is somehow just short of its best without you.
But life goes on, in all its brave glory.
Dom still sleeps with the five pictures of Cora taped to the wall where he sleeps. We still ring a bell every night and say goodnight to our angel, our missing piece. The other day Cosette said, "Cora died, and that's okay except that I really miss her." That probably sums up how we all feel, arguably better than anything I could write here.
Sweet Cora, I accept that you had a special kind of lifetime. That you
lived your life, that you weren’t gypped, that we didn’t get wronged. We were in fact,
all of us, righted.
Happy birthday beautiful baby. I’m so glad you were my little
light, and that I let you shine.
For those who knew you, you lit up the whole world.