I was thinking of Theo…
“I was thinking of Theo,” my friend Nicole said yesterday.
“So was I,” I said, and couldn’t
help but smile, struck by how I’d been longing to hear someone say I was thinking of Theo without even
realizing I had wanted it. Nicole had given me a present.
I didn’t mention to her that I
think about Theo every day. Thinking about Theo is, for me, much like breathing.
It’s a constant. At the same time, thinking about him sometimes socks all the
air right out of me. Sometimes when I see a flaxen-haired boy of eight who’s
been lucky and skillful enough to reach the age Theo would be were he alive, I need
to lean against something solid and focus on expanding my diaphragm to breathe.
It’s a precarious balancing act some days, a faltering dance. I think of him, I
breathe; then I think of him gone, absent, dead, and I can’t breathe.
Nicole is wise and kind enough to
know I think about him every day even though I didn’t say so. Generally, I
don’t talk much about Theo. One minor reason is because some days I feel like I
can’t breathe (see above ↑ paragraph). But this hinges greatly on another reason:
no one really wants to talk about a dead child. After all, what’s there to say?
How’s he doing? How’s his teething? How’s
soccer camp going in the afterlife? If someone were to ask how I am coping
having a dead child, I could go on and on, and there’s danger in that. While I
don’t expect anyone to therapitize me, a pretty shabby feeling people who have
kids can identify with is when your child is ignored, disregarded, forgotten. Especially
when you miss the child so much that at times you can’t breathe. I’ve been
enculturated to understand that talking about a dead child kills the mood in every
room except in those few specially designated rooms where people purposefully
go to talk specifically about dead children. Such rooms exist, and most people,
luckily for them, need never visit. But try it—over dinner, or, say, on a date,
at a party, or even in church! of all
places—bring up dead children, and see if you don’t get the stink eye. The mood
shifts; you can feel it in your skin. The barometer drops. Eyes dart, fingers
twiddle, and you can see your breath in the air as someone clears his throat in
uncomfortable recognition that he will one day die like all the rest of us poor
slobs. We’re in this together, after all, though people don’t generally conduct
their day-to-day mindful of this understanding, and within a minute, someone changes
the subject, and the topic drifts back to something pleasant for everyone else
to be comfortable again: sports, food, new plastic stuff to buy, the dreaded I was on Facebook and I saw a picture of this
cat… The one who is most afraid of death tries hardest to crack the first
joke following that pleasant rebound.
So it’s brilliant that Nicole said
“I was thinking of Theo.” She was being bold and she was being mindful. Until she said this, I did not
know how I much I’d wanted someone to appear before me as if by magic,
providence, or kismet to say “I was thinking of Theo.”
Turns out, you are right now
thinking of my son; thereby, you are giving me a gift as well. You, then, are a
mindful person. It is amazing, really, that you are here reading this, enduring
such jolly holiday tidings, breathing in and out, hopefully comfortably,
perhaps contemplating what you can do to make the world a touch better and to
fill the stocking for Theo, for your loved ones, for yourself. That’s the job
of the stocking: it is for Theo, it is for your loved ones, it is for strangers,
and it is for you. You, reading this now, are here because you are mindful.
Some of you have come here for
years, and yet you know so little about Theo. What is there to know? He lived
for nine months. He lived for 271 days. He only lived for three relatively healthy
months in which he was able to laugh, cry, smile, swing, eat, stretch, poop
straight, and babble. Then came the concluding six months, bedridden, tubes and
tape, shunt and port and machinery and “Careful if you touch him, you may pull
this tube out… Watch out for that wire…”
I will tell you that in my
experience there is little that can surpass the great beauty in the mundane act
of watching a healthy baby sleep well.
Since I have you here, now, being
mindful, breathing in and out, and since you may know so little about him, I
will tell you a few things about my boy Theo.
Thelonius Luther Helbert Fueglein
was born with a mohawk. It was tall, bright yellow, and it refused to stay
brushed down. People asked what product
(as if) we used to make his hair to stay up like that. I have a hundred pictures
of him with his giant yellow mohawk. When the surgical prep team shaved his
three month old head to resect his lemon-sized brain tumor, they left the
middle path of hair intact, seeing no reason to disrupt his life any more than it
had been. I have a hundred pictures of him like this also. He was eighty-nine
days old when they shaved the sides of his head.
Theo loved to swing. When he was
two weeks old, 75 days before the tumor hit, we found that nothing would calm him
faster than strapping him into his blue car seat and swinging him in wide arcs
through the air. His eyes would open wide on the forward swing, narrow as he
arced back. His mother Karla talked about how he was going to love roller coasters
when he grew up.
Theo loved his mother. Often when
she entered the room, his ears would prick up a bit, and he’d follow her movements.
Babies so young don’t track with their eyes, but if he was watching anything,
it was her. He knew when she was in the room. She was protector and she was
food. After the tumor was resected, she was just about the only thing he’d respond to, if
weakly.
Theo loved ceiling fans. As his
newborn eyes adjusted to the life whirring around him, his eyes grew wider for sightings
of Mommy and of ceiling fans. He was mesmerized by them. Maybe they helped calm
the brewing pressure in his cranium. I am convinced that this is why swinging
helped him feel better when he’d whimper and cry.
Theo loved the hum of the kitchen
stove hood vent fan. When swinging him below the ceiling fan wouldn’t calm him,
I would dance him in slow circles in the kitchen, on each revolution swooping
his bitty body beneath the hood vent fan. I would sing to him a simple song:
Where are you my
darling boy?
Where are you
my Theo?
Here I am, here
I am
I’m in the
kitchen in daddy’s arms.
When the sun has gone to sleep, we will find our rest
On the
hillside, on the soft warm ground
And the moon
will settle us down
As the world
spins ‘round and ‘round.
Ten minutes of any syllabic babble usually did the trick, until
he was three months old. Then the tumor hit, and everything changed.
Theo cried for
hours after he’d had his stroke while we waited for the anesthesiologist from
another town to come to the big city put him under for an MRI. We still had no
idea what was wrong with him. Since he was crying, he could not be dead, the
only comfort. Half his body moved differently from the other half that would
not move. No matter how I tried to distract him, he would not look at me. I
remembered wondering if he was blind. On that night, he was not. Blindness
would come later, after the chemo. We rocked him and swung him in tiny
arcs in cramped quarters. I sang him the song::
Where are you
my precious boy?
Where are you
my Theo?
Here I am…
I asked Karla if she wanted to sing. She did not—the first
time she’s ever been unwilling to sing! Only then did it hit me what these
words could mean. I’ve never sung that song since, and I never will again. We
didn’t turn off the kitchen vent fan until after Theo died.
Theo loved his Calming Vibration
bouncy seat that displayed in an archway before him a tiny aquarium scene between
two clear plastic panels of a happy starfish and two kissing fishes. Real water
pumped through this small aquarium, spinning the smiling starfish! Two animals
hung from the bottom of the aquarium scene for him to play with: a green
seahorse/dragon thingy and an orange fish. When he grew agitated in his massive
blue steel cage hospital bed, we’d secure the base of the chair on the bed and
strap him into the seat, mindful not to pull out any of his various tubes and
wires, and hit the on button: he’d vibrate to the tinny version of Brahm’s Lullaby.
Theo lost his mohawk to the first
and only doses of cytoxan and vincristine chemo he got. After his eyebrows,
eyelashes, and hair fell out, his head from behind resembled a dented baseball,
red stitches from the shunt and the resection arcing from the base of his neck
up around his ears. One might find the comparison somehow wrong or mean. More
than anything in the world, I will remember Theo’s battered skull. It will be one
of the last things I see before I die, I am certain of it. I will love his head
always.
I remember how Theo’s head smelled
during the various stages of his life, the various shapes it took on: from the
copper-scented conical dome he was born with, fuzzily soft and smooth, that
assumed a rounder shape the longer he was out in the world with us; to the
flatish backside that resulted from his first three seemingly healthy months
lying on his back, to avoid some sudden infant death, when it smelled like
Dreft and sweet new baby skin; to the broken ball smelling of surgery and gauze
and Betadine and tape it became when his cerebral cortex collapsed and the
occipital plate sunk in and upward. I see all these shapes everywhere. I see
his head in cloud formations, in the pattern of wood grain on telephone poles,
in oil stains, in the black and gray patterns of slate rooftops on distant
houses, in the river as it flows over rocks and fallen tree branches, in
hubcaps, in streetlamps, in dreams. I see these things and I think: Thelonius… Sometimes I imagine Theo’s
head growing right out of my own. It pops up out of my right ventricle, his
head with eyes and smile and mohawk. He travels with me, up on my head, looking
at all the things I look at, thinking of the things I am thinking, and we are
of one head.
The shaved
side patches grew back once the toxic chemo left Theo’s system. Some hairs grew quite long behind his ears. But
nothing ever regrew where the mohawk had been. For the last three months of his
life, Theo had a reverse-mohawk, an anti-mohawk, puffy on the sides, bare down
the center.
I love the shapes Theo’s skull
took.
Another
thing to tell you about Theo: he taught us many things during his brief stay
with us. I figure he taught us more things, or, at least more crucial things, than we could have ever
taught him.
He taught us patience. .5 mg. lorazepam
(working its way up to 1 mg, then 1.5) crushed into .5 mg/ml phenobarbital, followed
twenty minutes later by a 10 mg/15 ml. solution of morphine. Twenty minutes
later, 5 ml. formula mixed with .5 ml of lactulose and/or docusate. Thirty
minutes later, fentanyl nebulizer. Set up the feeding pumps. Wash the syringes.
Where’s the chloral hydrate? Clean the Hickman port with the proper dose of
heparin. Ativan, methadone, Zofran, oh my! Twenty-four hours a day, our dining
room was his hospital.
He taught us endurance. How many
long nights did I hold him, wondering if he’d die in my arms before sunup? I
could count them; I could break it into minutes. I'd rather not, though.
Sometimes it feels like it is still happening. It feels like it was decades ago;
it feels like it was yesterday. We still endure.
He taught me how utterly critical the
simplest motion can be: once per second for hours I stroked with alternating
thumbs that small space between his eyebrows to comfort him after his
gastrointestinal tube placement surgery as he was withdrawing from morphine.
Those minutes and hours were the most crucial hours in the world.
He taught us how to value time. When
things would careen south with him—stridor breathing, gagging, crying—time
would speed up, everything would become utterly crucial. He'd calm, and time
would slow to a crawl. A trip to the hospital: anything could go wrong. The way
time moved while we were with him was like regularly experienced life-time, but
incredibly intensified. What he taught us is knowing how and when to adjust.
Someone told me it seemed like forever ago that Theo died, while it seemed to
me in that moment that he died yesterday; the next minute it felt like he'd
died seven years ago. Sometimes I think he’ll die tomorrow. To this day, he is
still teaching us about time. He is teaching us that time does not heal wounds:
what matters is what we do with our time, how we spend it, how little of it
there is.
There was a word on the one-piece,
snap-up, soft fleece sleepsuit we buried him in, medium blue with dark banded
collar, a solid, strong color on him, featuring a childlike rendering of a
mighty orange lion, maned thick brown. Next to the lion, the word “BRAVE.” His
dying took forever, and then it ended in an instant. It took all the hard-won
qualities Theo taught us to be able to hold him and watch him breathe his last
breath on Feb 20th, 2006, at 3:33 in the afternoon.
It is very frightening to be brave.
Theo taught us what it was to have to be brave for a little while.
We remember all this because of the
most important quality, the sum of all these pieces: Thelonius taught us to be
mindful.
These are the things I have to tell
you about Theo. And so we dedicate this stocking in mindfulness to Theo, to
you, to your loved ones, and to strangers we’ll never meet who are anyway our
brothers and sisters. As wise man Stan Kustesky once said on this blog, “When
you really get down to it, all we have is each other.”
I am grateful to you for being
here, reading this, and I am grateful to be the father of Theo and Lula.
Go be mindful and have a fantastic New
Year.
— Jamie F.
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