Happy Halloween, little Yoda

Happy Halloween, Little Yoda,

who does not look too happy dressed up in such silly atire...

rather undignified for the son of Daniel and Tori.

Too young to overrule his mother,

reluctant arms and legs threaded through 

appropriate openings - 

ok, this year, next year, we'll see. 10/31/2021

 

apple pie for the family

an apple pie for the family

mimi and opa, mama and papa

uncle jacques and aunt chris

grandpa mitch

still warm, gently placed in my basket

for delivery to the big house on the hill,

mama and papa's house

the only one missing is little Owen

where is he

he will have to wait for the next pie.

a place to pray

the sun is getting low in the sky

blinding me.

I close my eyes to pray

to the Mystery, the Power, the Unknowable,

that we call God, I will call God.

The He, the She, the Infinite, the force of nature

that drives water and nutrients up a tree trunk to 

feed every leaf,

just like the blood from the heart should

flow across every alveoli to carry oxygen 

to the body

I think of that as I gaze up to avoid the

glare of the sun in my eyes, 

the reflection from the pond.

I pray for Owen,

for Daniel and Tori, for all those

who suffer,

especially children.

Let me rest

can't you see that I am sleeping, handsome in my new shirt...

and can't you tell that I don't want a new diaper right now...

and can't you give me a few days rest after the last insult,

pulling that horrible tube from my throat, and inserting

the cannula in my beautiful small nostrils.

Isn't is enough to be able to sit next to me and admire

my beautiful skin, my perfect lips, my large hands,

which will take on the world, 

when I am ready.

when I am ready.

I will decide. 10/28/2021

Mother and Child

Finally

she holds her child, this child,

our Owen, the one who danced with death,

twice.

the one who has challenged every obstacle

and come out,

perhaps a bit bruised and groggy,

but still with us.

this mother has loved and caressed her child,

this child,

every day and every night, willing

and praying, singing and reading,

holding him in her heart

until this day,

this day, she holds him in her arms.

Finally.

Classic Mira

well, she's worried, too, 

although perhaps not about her little cousin, Owen

this is, after all, classic Mira, assessing the situation

and finding "it" wanting, whatever "it" may be.

she may be urging her Mimi to take climate action seriously,

which I am planning to do, by the way,

or may be about to sneeze, maybe she is looking at 

her father with a look meant to alert him to his being

"inappropriate" - he may be making a big goofy smile

she would have issues with that.

We don't know exactly what Mira is thinking,

but I sure can't wait to find out. 

Spread the love

while Owen sleeps in his NICU bed,

this one needs a nap while his mom paints

colorful patterns on neighborhood streets.

this little one, warm under the borrowed blanket

of the infant next door, sleeps.

finally, after blocks of walking and singing,

finally in a leaf-covered quiet driveway,

he sleeps.

Joy

Joy is holding your son in your arms.

In that moment, the warmth of his skin

against yours, there is no greater joy. 10/23/2021

Back in Dad's arms

back in Dad's arms,

his skin against mine, I rest after

my surgery, how hard that was

but I am still here

in Dad's arms, warm in Dad's arms.

what road this has been, ejected so forcefully

into the world one month ago, sirens,

flashing lights, beeps and wires, 

tubes, oxygen

here I am in Dad's arms, my Dad.

My Dad.  10/22/2021

Our miracle baby is still with us!

Sucking on his ventilator tube, he

calmly returns to his NICU room,

ho hum, no big deal, no more heart-lung machine.

I'm here, I'm still here.  

I'm the miracle baby, the one who was signed

up to donate my kidney, about to be let go,

until my little echocardiogram showed "something", 

a shift of some sort and my trajectory did an about face.

and then

well, not so great, and about to give up hope

and 

I'm still here

sucking on my ventilator tube, contentedly even,

waiting for the next step.

I'd like to go home. 

We had fun and laughed, even when we may have wanted to cry

It's hard to imagine laughing when your

baby, your son, is on life-support.

Humans are amazing, in the most dire circumstance,

one can find joy, if one looks hard enough,

if one allows that feeling in, in spite of it all.

his hand in hers, he's making a joke,

laughing at it even if it's not that funny.

one adapts, as one has to, 

even knowing that in one second or one

minute, the game may be over and finding

joy may be hard to find,

until you do. 10/20/21

I'm still here with my rattle

I'm shaking it now!  one, two, three!

I'm still here with my rattle,

my mom and my dad, the nurses and the doctors.

late at night, with my grandpa and my grandma.

I'm still here, world.

We're waiting, world, to see if I can

take my rattle home.

The waiting is the worst, we all

want me to go home, I want to

go home. 10/19/2021

A bad day

 the tests did not go well.
the plans fell through.
long hours of talking with doctors
is there a path forward, a last push.
a couple or three days to clear an infection
a higher dose of drugs
but the window of hope is closing
and we push our love for Owen, push him
to keep going, keep fighting

but inside, I fear the light is dimming.

Owen's hands

Owen's hands 

will grab life by the horns -

I know this to be true.

the dials will spin wildly as his lungs

take in oxygen; the doctors will be stunned.

Our Owen, the fighter, will take on the world.

I know this to be true. 

At three weeks, he already needs his fingernails

to be clipped, the rattle is tiny in his grip.

Our fighter, Owen, will heal this week,

his lungs will expand to take in the

world.

This much I know. 10/17/2021

Update: Tomorrow is the big day when Owen will go through some stress tests by reducing the ECMO heart-lung machine to see his reaction.  I pray for him to shock everyone with his strength. 

Hey macarena!

mama and baby at play,

hey macarena, hey macarena!

his hand gripping the rattle, her hand

guiding his to shake the rattle,

singing to the tune, the rhythm of

hey macarena! 

then letting his hand go, he keeps

his grip and tries to shake the rattle

but it's a little bit too hard.

tomorrow is another day,

next week is another week. 10/16/2021

Owen update:  Lots of play today with his papa.  Starting Monday, the medical team will try to reduce the support from the ECMO to see how things look as far as getting him off that.  

I am so cute!

I am so cute! 

I open my eyes and gaze steadfastly at 

Myself!  

looking past the tubes and wires,

I see ME! 

Alive and fighting to escape this place

To not have to listen to bad karaoke

and the Alchemist.

I'd rather listen to Harry Potter;

Mimi told me it's better.

I understand it might be awhile,

but I will fight to get out 

as soon as possible.

I am missing Mimi,

as she misses me. 10/15/2021

Update:  Owen has a new infection, detected in his blood and urine; antibiotics will handily take care of that quickly.  Next week it's critical that Owen make progress in reducing the pressure in his lungs, so that we can get him off the heart-lung machine.  His team of doctors, probably the best in the country, if not the world, are increasing the medication to help dilate the capillaries in this lungs.  

Cute clothes - too small for Owen now!

so cute! a knitted sweater with matching pants,

onesies for newborns and striped pants, a little

red sweatshirt, some tiny sneakers on the top shelf.

All too small for Owen, our beefy baby boy

who gains weight over in the NICU, rapidly

outgrowing these adorable clothes.

we wanted him home, to wear at least the bigger ones.

happily we will go buy bigger baby boy clothes

when we joyfully bring him home

our little, beefy boy who we love.

and meanwhile

and as Owen is stranded in the NICU

amidst whirring machines and digital displays

this little one, Mira, is exploring the world. 

- dressed smartly in her new fall clothes.

Let's not forget the love and joy of 

the one who is happily in the world 

of sunshine and bike rides to the Y,

of stacking rings and friends.  

the world is a beautiful place

and, God willing, Owen will be

running in the grass, the sun shining

overhead

One step at a time

one step at a time, little Owen

no rush, we are here with you, as long as you 

are here with us

those little feet may be soft and smooth right now

but in time, your feet will toughen up from walking

in the tall grass, along rocky trails and chasing Bella

along the sidewalk as you race towards the park.

just doing things that children

do, I know it's true.

Day 19: No progress, no deterioration

he's on his own schedule

in a way, I'm not surprised -

he is the son of two spiriting parents,

one who climbs onto refrigerators at 10 months,

the other who put away his toys for 9 months 

when his sister showed up, how dare her.

he has taken two weeks to show that blood

can flow mostly the right way in his heart,

all while we planned to donate his kidney,

hold on, he says, I'm not done yet.

that said, every time I hear the ring of a text,

I brace myself for the worst.

Instead I will myself, tomorrow, to expect

the best news, or at least, no news,

as I wait, sometimes impatiently, for Owen

and his doctors to deliver the good news

of his impending homecoming.

The heart and lungs

The split, the shunt, the descending aorta.

on a boring day, thank the Creator for this boring day,

we can discuss over dinner how the heart and lungs work.

enjoying homemade apple pie with vanilla ice cream,

we watch a video on pulmonary hypertension, 

and follow up with sketches and annotations,

Susan asks for a copy; Karen says my handwriting is too messy.

I'll understand now when Daniel tells me about right to left shunt

(really bad) where de-oxygenated blood flows into oxygenated blood,

or left to right shunt (bad, but not as bad) when oxygenated blood flows

back into the de-oxygenated blood heading to the lungs.

and the split, having to do with valves not closing at the same time,

when they should, because pressures are wrong.  

I understand this now.

I hope for more boring days where baby steps are taken

toward recovery, that our Owen will be able to come home.

soon.

The Fighter

Hey, I'm not ready to go yet.

I see it in his eyes that follow me as I 

sing to him, 

rip up that paperwork to donate my kidney

forget that genetics stuff, I'm fine.

just started out badly...

time for you all to give me a chance.

Shock settled over the room when the echo

showed zero splits, blood flowing across his

lungs.

now we wait for tomorrow, for the big test,

to see whether Little Owen will show up,

little biceps bulging, eyes open, to fight

for his own life,

and for ours. 10/9/2021

Day 16: I love to go a'wandering

I love to go a'wandering

 along the mountain track,

and as I go, I love to sing

my knapsack on  my back

Val-deri, val-dera

val-deri, 

val-dera-ha-ha-ha-ha-ha-ha

val-deri

my knapsack on my back.

I love to wander by the stream

that dances in the sun

so joyously it calls to me

"Come, join my happy song"

I will always sing that song to you, my darling Owen,

and feel you in the wind, the golden aspen trees

that left us in awe on the drive up the canyon,

the thrum of the motor, my brother, the wind in my hair,

the sun falling behind the clouds, the rain,

all of nature in display, all the ways I will feel

you, when I go see Owen the fish, when I go see Owen

the turtle up where I would pray for you.  

I will go there often and we will talk

in that special language between a grandma

and her beloved grandson.

I love you, Owen.  

Opa shows up, in absentia

If he were here, he would  have been goofy,

if he could have kept himself from crying,

but he can't.

So wearing his Elmo hat and bringing his book,

I sub in for story time.

Opa loves You.

Opa, the goofy guy with the balding head,

the man who loves children and animals so much,

he cries readily at their suffering.

A good man.

But we can't be sobbing for our loss,

Let's celebrate Owen in our lives and dance 

and sing, tell stories and read books, let's make jokes

and do goofy imitations.

We have so little time, let's not waste it on tears.

10/7/2021

Happy Birthday, Owen!

It's time to celebrate!

All gather around for Owen's two week birthday,

come doctors and nurses, come mama and papa,

roll out the birthday cupcakes, and put on a hat!

Let's sing to Owen,

with all our hearts and lungs,

with spirit and love.

and for this special event, papa can hold

his son in his arms and look into his eyes,

feel the warmth of his small body against his

and feel thankful for these moments,

too short, but never forgotten. 10/6/2021

Let's dance until the day is done

Son,

Let's dance until the day is done, 

while we still can, 

let's laugh until the our bellies hurt

I'm with you, father with son, we're together...

I'll roll my shoulder and smile under the mask,

you'll suck on the tube, and furrow your brow.

Let's ignore the  machines and the whirrs and 

hums of machines, the steady dings of monitors...

It's just you and me, son, dancin' as long 

as the day, I'm smiling at you, son...

I know you are smiling at me.

Only when you are dozing in your small bed

will the tears and sobs wrack my body.  10/5/2021

Day 12: Its time to say good-bye

We are with you, Owen, in these last hours,

between sobbing and mute shock, we touch

your beautiful forehead and chubby tummy,

you suck hard on the ventilator tube, then your 

face relaxes, then your tiny eyebrows furrow.

I know you hear me singing, I know you

are listening intently to The Lorax, the book

your grandpa is reading, your parents are

there next to you, whispering sweet nothings,

I am here, our love for you fills the room,

you will never be forgotten

beloved Owen

our hearts weep.

Day 11: A hard day

a spinal tap, blood tests, a swab

another

and nothing shows up

the splits split and rejoin

we stumble along in an oscillating mix of hope

and fear, we are in a daze, there is only

so much we can take

I forget how to spell or my fingers

can't find the keys, there are no spaces

or too many, and words come out all wrong.

this is what happens when your heart

is in your mouth and you don't know

if you will swallow it whole or

drown .

A hike with Daniel

we walked through forest, through dry grassy meadow,

we talked and were silent.

he stopped, checking his phone for news, texting with Tori.

we were silent.

there is no getting away from the uncertainty, the dread,

the fear, the helplessness, we can only distract ourselves

and see the beauty of the fall day,

maybe a moment of spirited discussion about something else,

but there is no escaping that we are thinking of Owen 

with every breath, with every heartbeat, with every step

no matter where the foot lands.  10/2/2021

Thank you cards

I needed to write 16 thank you cards;

some doctors, some nurses, a Broncos fan

and one who has four dogs. another who studies

organic chemistry on the side, two who know Tori

from 5th grade and from college,  the big doctor

who directs it all.

we thank them all, deeply, with gratitude,

bottomless gratitude for all they do for 

our beloved Owen.

In gratitude, I control my trembling hand

so as to render my handwriting legible.

I want them to understand

each word of thanks. 10/1/2021