Marsbarn Designs...

Seeing beyond the squall and realizing you're good with the rain

There is life going on beyond the squall of
illness, but so much of it is difficult, I hate
to conjure it into words. 

Big E is on disability.  He injured his
knee at the beach with Little e, and has
been unable to walk for 10 days.  His 
recovery looks to be long, slow, and
dependant on time.

Our upstairs bathroom sink developed
first a clog, and then a broken pipe.
The plumber that was meant to come
yesterday did not, which means Big E
will limp up the stairs today to give
direction while I am meeting with G's
doctors. 

An underground nest of aggressive,
tiny yellowjackets lead to meeting
a lovely beekeeper, who came and
poisoned the nest for us (after both
G and I had been stung in consecutive
days.)

We roll with it all, like an egg on a
down hill slope.  

The plumber coming today is our
favorite plumber, and he'll do a great job.

The beekeeper was wonderful,
and our connecting with him was pure
kismet; his daughter happened to be
walking by when Big E discovered the nest,
and said, "My Dad can take care of that."
And, poof! He did. 

The hardest part of all of this is Big E's
knee.  Tincture of Time is total crap.
The "watching paint dry" of care. There is
nothing to be done, nothing to be helped,
no plan, no expectation, nothing but waiting.

Wizards, doin' it like the muggles

I saw a wizard on the bus the other day.
He looked like a Weasley cousin,
all red hair and beard, wearing muggle
clothes to fit in, of course.  

A once purple velvet dress overcoat,
now pale gray and worn fuzzless,
with ornate gold embroidery on the sleeves,
back and yoke, with a red cross centered
on the back panel. Pope meets 70's
Beatles.  This was over a long, straight
dress made of handwoven rectangles;
south American hand made in natural
tones.  Over both coat and dress, 
he wore layers of intricate, hand beaten
silver jewelry.  Panels of wrought silver
from clavicle to sternum, with semi-
precious gems. (No doubt brought back
from a dragon training session in India.)
Upon his head, he wore a hand beaded
headband in a Native American style.
Upon his feet, he wore sensible white
leather hightops, laced only at the base.

He Who Must Not Be Named might be gone,
but obviously there's still goings-on
in the Wizarding World. 

three weeks in

Today marks three weeks.

So long, so short, so much, so little.

Saturday to Monday

This past Saturday, Sweet G and I were home.
It was the first time in 17 days that we were 
able to be at home for 24 hours straight.
The first time in over half a month that there
were no doctors or nurses, no machines that go
beep, no hospital gowns, no food made by strangers.
Big E and Little e were off for the day, so the house
was ours and quiet.  It was SO nice. Bliss.

Most of the time we give.  We give time, energy, solace,
money, talent, and whatever else is desired. We strive
to give comfort or support where ever we can.  But 
sometimes, we must be on the receiving end.  If we
are lucky, a few of those good deeds come back
to us.  If we are very lucky, they return with interest.
We have been so blessed.  

Flowers, pick-me-ups, kind words, good thoughts,
cards, letters, emails, phone calls, small gifts that
make a person smile on a hard day, large gifts that
make a person blush, and cry, and feel warm.  

 These are the things that help us go from the bliss
of a weekend at home, to Monday's return to doctors,
nurses, hospital gowns, and the slow road of returning
to health.

(All photos taken by G in her hospital room before she
was released, a week ago yesterday.) 

what the tide brought in

The transition from healthy child to sick child 
has such suction. It pulls everyone with it; 
child, sibling, parent, grand parent, friends.
It is a ruthlessly demanding thing, illness.
All those wants and needs and imperious orders.
It's rude and grabby.  

We have moved now from acute to recovery,
which really means a move from allowing the illness
to dictate everyone's move to making the illness follow
our rules.  You sit. You stay.  You go away, and don't
come back.

This change in perspective makes us all more aware of
what we lost while the illness made the rules.  
G must sit, rest, and watch things she's never needed
to be aware of before.  There are things we didn't do,
things we won't do, things that are not allowed to be
done.  

G will not start school with her class in September.
I will act as go-between and ferry home what work
she can do here.  She'll have a tutor as well, and we'll
do what needs doing.  

I suppose the day will come when I start being angry
at her illness, instead of just being glad G's here with us.
I'm not sure I'm looking forward to that tip of the scales.
I think that anger will weigh more than the on-going
relief I experience now. 

Before diagnosis, G and I spent a morning walking along
a beach counting the different types of seaweed washed
up on the sand.

It was such a good morning. We knew we were going to
be entering a difficult time, but we just walked and
watched.  We counted more than 30 different seaweeds
(and one sponge).  

Setting down

We are home now, all of us.  And I am tired in a way
that I wasn't in the hospital. It's not the futile emptiness
of working a double shift or the grubbing tired that
dogs you with the flu, or the brittle feeling you get when
your sleep has been robbed by a car alarm that's run all
night.  This is a deep, warm, driving feeling of running
near, but not at empty.  It comes from loving and caring
and striving and doing what needs doing.   This is the
tired I felt when my girls were babies and sleep was
something other people did.

I remember the moment, when my younger girl was in 
first grade, and I had the epiphany:
I wasn't tired any more.  
Well, I might have been tired, but the tunnel vision of 
pulling through each day was gone. The fugue of sleep 
deprivation had lifted, and I was myself again.

I think that's how it will happen this time, as well.
I will continue to push forward, feeling my way through
our new routine, and then I'll be there.  Entirely there.  
And best of all Sweet G will be there too.
I have to remind myself everyday, that despite how tired
I am, she is the one doing all of the heavy lifting;
I am only the assist.  

 

calling names

Tony, Laurie, Liz, Maya, Sarah, Lynn, Sherrill, Elizabeth,
Jen, Maria, Kit, Emily, April, Kris, Aimee, Jill, Shirley,
Sarah, Pat, Ian, Trevor, Kendra, Liz, Dawn, Caroline,
Michelle, Mary, Caitlin, Ivy, Jessica, Jody, Jesica, Molly,
Izabella, Rachel, Trey, Kathy, Clem, Brook, Larry, Sarah,
Nicole, Jeannine, Kimber, Megan, Nazim, Kim, Laura,
Noelle, Yuri, Shannon, Emily, Patrick, and Megan.

And that's not all of them; the nurses, volunteers, techs, 
art therapists, physical therapists, occupational 
therapists, housekeepers, and general doers of good.  
You are touched by a lot of hands when you spend a 
dozen days in a children's hospital. Most of these people 
were amazing beacons of kindness, a few were detached, 
and one will remember us for a very long time because
she would not listen.  ("This is how new doctors learn.
And those patients we learn from, we remember."
Our doctor said to me after I complained, and she
assured me the resident would be spoken with.) 

You are no more at the mercy of strangers than when
your child is ill and scared, and the power to heal is
beyond your ability.   Nursing is a job akin to law
enforcement; their everyday is likely to be your worst
day. Their work-a-day is to be with those who would
most likely prefer to be elsewhere.  No matter how
marvelous they are, you hope not to see them again,
and when their weekend is over, and you are there to
greet them on their Monday, there is such a mixture of
bitter resentment and relief for a familiar face.

I called as many nurses as I could by name in an
impotent attempt to reinforce that they should want
to know my child by name and temperament, and not
just by room number.   There is a rather pitiful flicker of 
pleasure when a new nurse says, "Oh, yes, I've heard
she's working hard."  You have heard of my child. Someone
else spoke of her to you.  She is a blip on the radar.
Perhaps, just perhaps, I can relax a little. 

 

And then, it finally happens, and you are released back
home.  There are instructions and lists and packets and
follow up, but all of those people who held your child
in the palm of their figurative and physical hand are
gone. Poof. Or more correctly, that child you worked
so hard to impress upon them is gone, and they remain
to tend to the next small body in that same bed. 

Get rhythm

There is a point in a prolonged hospital stay
when all is rhythm and cadence. We have our
base line, and the nurses set the tone.   

We know the beat; vitals at 10 pm, 2 am, 6 am, noon,
and 6 pm. We start to tap our feet when the rounds run
late.  The nurses come and go, and we try to learn all
of the names and their particular ways.

I actually sleep better here, on my slide away shelf,
than I did at home.  I no longer wake at 3 am with
insomniatic thoughts, instead I'm up at 6 waiting for
the nurse to come for morning vitals.  That constant
whir of unordered thoughts has left. I'm not missing it.

We will go home soon. It's just a waiting game now,
as Sweet G's heart and bloodpressure get with the beat.
Then we'll start the new routine. 

transitions: it's not just a dead fish, it's a metaphor damn it

I've been looking through my photos, trying to decide
what images I want to use from our adventures earlier
this summer.  Some of these images feel like they are
from another world, or another time, which I guess is
technically true of anything not completely in the "Now". 

We were in a different place (metaphorically and
physically) when I found this pipe fish in the dry dunes 
behind the high water line.  I wanted to carry it back
to the beach house, to show everyone, but it was so
delicate and rigid I thought it would break apart in my
hands. I could not stand the tragedy of its breaking,
so I took photos instead.  It didn't smell, and
it felt like the finest blown glass in my hands.

This summer brought the kind of illness that doesn't
go away in a week, or a set of weeks. While we've left 
behind the feeling of frantic worry we had at admission, 
our Sweet G will need many, many weeks (or months)
recovery to be whole and strong again.  We are confident
that we will get there, but our immediate future is a
flow chart worthy knot of appointments set together
like timed dance routines. You go here, I go there, we
dosado  around the square.  

Which brings me back to the pipe fish, sort of.
Perhaps I'm stretching things, forcing connections, and
trying to make what I want to use (these photos) of
something cool, with where we are (someplace completely
different). We're going to have a lot of disconnect as we
move into the long term rebuilding phase. The routines
we used to promenade in and out of are on hold.  My
Etsy shop is closed, math tutoring is on long term hold,
trips have been put aside, and part of the house completely
reorganized to make room for the new patterns.  Most of
this will be returned, eventually.  

I'm looking forward to the unexpected bonuses.
That new rhythm that sticks and carries forward in a
good way.  And, I'm not putting aside those bits from
the "before" that at first glance just don't fit.  While
the photos of what is, in reality, a dead fish, might
seem an unfortunate image to pair with medical
recovery,  I want to drag forward the over flogged idea
that we can make of this what we want.  

We can see this creature as a dead fish, dried and 
desiccated, or we can see it as a gorgeous feat of
natural engineering and a bit of organic art.  
Similarly, we can see the transition from healthy to
ill to healthy as a hellacious unfairness, or we can pull
forward the indescribable joy that we can rebuild
and that eventually all will be better than it was before. 

Because this is where we are

I spent the better part of a day hoping to see Clem.
Clem the Clown. Yes. I know. So. Not. Me.
But, this is where we are.

We are 9 days into a stay at the Children's Hospital.
We are at the point where I can find good in a bus
driver tooting his horn.  Double punch day at the 
canteen's coffee counter is a hoot, and we hope
violently that we'll leave before my coffee card is full.

First it was, "Hey, the event calendar says Clem the Clown
is coming!" With the reply, "Oh God, Mom. A clown?!"

On and off for hours, we talked about Clem.
Would he be scary, would he be creepy, would he talk,
would I (hope against hope) get a balloon hat?

My girl moved from disbelief to laughter to resignation
that I've lost my mind, but she smiled and teased, and
her shoulders settled down.

Then, after 4 pm, I gave up.
"I think we must have missed Clem."   

 "Mom, um, I'm so, um, sorry. My heart bleeds."

"Hey, do I hear sarcasm? You wound me."

And then, about 10 minutes later, there was a knock 
at the door.  A painted face peered in and said,
"Can I come in?  I heard you might not want to see me."

My girl said, "Oh. I don't want to see you, but my Mom
does."  
"CLEM!" I cheered.

This is where we are.  
We build up anticipation for shrinky dinks and clowns,
hospital bingo, and rides in the elevator. 
We get more and more creative with the markers 
on the white board for half liters of water drunk. 
We watch the bruises from blood draws color, and each
night we save one 15 minute excursion to watch the sunset. 
Diversion is an art form; we are becoming masters. 

Clem was wonderful, by the way.  He was sweet and kind.
He made my girl laugh and smile.  That was the magic,
not the rope trick.  He left us with a peacock feather,
two red noses, coloring sheets, and another day we
could cross off the calendar.