We invite you to remember your loved ones who have died by committing an act of kindness in their honor. Love, kindness, generosity, sharing, these are the gifts we can give to them.

Wednesday, December 18, 2013

I was thinking of Theo...

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.


Anonymous said...

Thank you so much for this. Parts were so intense that I needed to minimize my screen for a minute, because even looking at the words was a little bit overwhelming. I appreciate your words, I'm grateful you wrote them.

D.E. Coghill said...

I think about Theo. People are often talking about Random Acts of Kindness, and I think of Theo. Of course, I never met him, I only know his dad and then only "at work." But I still think of Theo.

It's not often that a child you've never met by parents you don't know very well (or at all) impacts your life. But he does. More often than I'd expect.

I hope I continue to see an influx of Random Acts of Kindness, as well as toss out a few of my own whenever I can, and I hope that I continue to think of Theo. That would be cool.

~The Helbert Fueglein Family~ said...

Thank you both for your comments. And D.E. Coghill--it means so very much that you think of him. I agree that it is unusual for a child you never knew, of parents you didn't know very well to have an impact on your life. I would think so too. Of course I know that most parents would say that their children are special, and really all children are, but being his mother, I will go ahead and make the claim that Theo was--and is--an incredibly special child. He touched more people than I know--and continues to do so. For which I am deeply grateful--and I am humbled to be his mother. I hope if you do kindnesses in his honor or in honor of someone you love who has died, you'll come back and comment here, or send an email to me or to Jamie and we can publish your kindness story here. All acts of kindness I believe reach out like the rings and ripples on the water when a small pebble is tossed in. The ripples keep going all the way to the edges.

Anonymous--I understand. I had to close my eyes because it was too much. When they weren't blurred by the tears. I thank you for taking the time to comment and most of all to read. The invitation to share your story of kindness is also extended to you. Please feel free to share your story of a random act of kindness that you may do in memory and honor of someone you love. ((((((hugs)))))))

by michele young-stone said...

I think of Theo. I remember seeing you three just days before his world and your world changed. We were standing in Babies R Us, talking about nursing, the size of our respective nipples. I was in love with Theo's hair, couldn't get over how much he looked like Jamie. He was a rock star. I imagined our boys becoming playmates and then cohorts. Karla and I were both "nursing buxom," full of mother's milk. And then our lives veered in two sharply different directions and I struggled reading about Theo's procedures and pain and prayed for him and for my own son and for all the babies everywhere. And I cried how I just did after reading Jamie's words. And as the news of Theo's diagnosis became grim, I prayed for a miracle because if ever a miracle should occur it is on behalf of an innocent baby. ... And then, after Theo's passing, every year on Christopher's birthday, I asked for donations to St. Jude's in lieu of plastic toys. Because someone is going to get that miracle. Sometime. I love you all very much.

~The Helbert Fueglein Family~ said...

Michele (((((((Hugs)))))))) Thank you so much. I remember that day in BabiesRUs. I was thinking the same thing--that they would go to school together, play together, be friends. So sad how thing changed. Amomg the countless things I grieve it is having a houseful of boys running around, climbing the big huge sugar maple, getting into trouble, doing whatever boyish things they would do. Makes my heart heavy. But I love you for saying this and for being here always in spirit and holding that place of love for my boy alongside yours. Love you~

Patty said...

I am just now discovering Theo's stocking -- and I am brought back to all those days when I read Karla's blog and followed with tremendous sadness your journey with Theo -- but also the joy, because there was also great joy, as there still is. Every time I see that picture of Theo with that shock of hair, I smile big. How can you not? What a face! What a beautiful little guy! I'm just struck on this solstice morning about how connected the joy and the sadness are, how maybe odd it is that I'm just realizing this, how loving deeply teaches us this lesson more than anything. I love that you and Karla keep telling Theo's story; "We tell our stories in order to live." We need our stories. Those, too, are our acts of kindness. We will keep passing them on. Thank you for this lovely morning shared with you and Theo. Peace and love to you.