Untethered at last
Not one thing they can think
to push into either arm, wrist
I keep the needles, just in case,
Dangling like a bracelet
but dance away from the bed
Close the bathroom door
Barefooted, hit the hall
Stroll softly to the end
and watch the old lady in the window
head wreathed in stars
No one I've ever known
now no way to deny
she's been there all along
Not ready for a polka yet
I do a bounce and a quick
small soft shoe shuffle holding onto
the end of the bed.
And clean the room,
and sort my clothes
and drink the smuggled Mountain Dew.
Pack my going away bag.
Smug. No way around it:
Just plain smug.
19 October 2011
Monday, October 31, 2011
Monday, October 31, 2011 2:10PM EDT
Today was scary...and not because of the holiday.
During the painful part of 3f8 Ally started hallucinating. She had crazy, wild eyes and kept saying she was scared of the beeping pump. There were no pumps beeping in the area. She even seized (or at least what felt like some mini seizures while I held her in my arms). She was able to refocus her eyes when we asked, but the whole thing was horrible. Even the nurse who was with us said it was scary for her. Ally is currently "sleeping it off" and seems ok. We are still at the hospital. I will try to update again tonight, with the better parts of our day.
Thanks for thinking about us today.
Posted by puddle at 10/31/2011 02:44:00 pm
Sunday, October 30, 2011
Sunday, October 30, 2011 6:50 PM, EDT
Let's call this one: Ally Rocks Again!!!
We are here in NYC. Our day began last night with the snow. Ally was very excited about the snow and the trip. We are pretty sure she did not get to sleep until around 11:00. The electricity kept going out throughout the night, and each time it woke Ally up; I think we all got about 4 hours of sleep. We woke up at 5:30 this morning, and by 5:50 Daddy was shoveling the foot+ of heavy, wet snow. By 6:20 Ally had taken her shot (which she is doing awesome with) and we were on the road with Grammy and Grampa. The drive to South Station was slow going, but we got there. Then we waited, and waited and waited. Our train was supposed to leave at 8:40. By 10:15, they told us trees were down in Connecticut and they were not sure they would even be able to run the trains today. Daddy went up to the bus station and got us 3 tickets for the 11:00 bus to China Town. Of course there was an accident on the highway, so we didn't get to the city until 3:45. We had some trouble finding a taxi, but we were able to make it to the Ronald McDonald House by 4:15. It was a long day, and Ally rocked it out. She napped a bit on the bus, was VERY excited as we started to pull into the city, and took the whole 3 hours at South Station pretty well. Even though we were starving (as we had only had breakfast) we let Ally play for a bit, and then headed out for some food. Ally and Daddy are currently making tiaras, and we are going to head down to the dinner that is being provided soon, so we can get dessert.
Tomorrow we need to be at the hospital for 7:45 AM. I'll update tomorrow afternoon or evening about how the day went.
Posted by puddle at 10/30/2011 09:22:00 pm
Thursday, October 27, 2011
The door buzzes, bangs back
the heavy steel doors
to help at last
How could that not bring you back?
How many times we played that game.
How many hours in bland beige rooms
waiting for those doors to open
waiting for that fifteen minutes
waiting for something like information
waiting for a decision
Finding back ways in,
sitting quietly, holding
your hand, praying
or something like it
And when the rules
No visiting hours
just go on in
And would you like us
to call the Chaplain?
And the cold
Until at four in the dark
some sweet unseen angel
drapes a warm blanket around
my shoulders, your fingers
turning black with cold
Sometimes during the long
I felt you, gently
curl up around me
offer me your presence
18 October 2011
Posted by puddle at 10/27/2011 02:01:00 pm
Wednesday, October 26, 2011
They ask endlessly.
How much? From one to ten.
Ten, worst ever.
If you've known ten
then nothing on their scale computes
You must be mute
Most of a lifetime ago,
watching my father turn blue with pain
The old question:
bearing pain well equals virtue?
In the waiting room hoping for help
Children running and laughing
Hours drag by
The witness leaves
But fear is not pain. Is it?
Terror will not kill you.
No subtle questions here.
18 October 2011
Posted by puddle at 10/26/2011 05:25:00 pm
Monday, October 24, 2011
At four, morning,
a young hippie,
past perfect, arrives to read
Real not memory.
So who was born on September 18, 1940?
Catharine the Great.
And Mary Queen of Scots.
And Lauren Bacall.
A great day to be born then?
The needle slips in, painless
for once. He steals away
with four bright bands of garnet
sparkling in the dark and quiet
18 October 2011
Posted by puddle at 10/24/2011 06:59:00 pm
Sunday, October 23, 2011
Takes weeks to make poems
out of pain and fear and hunger and thirst
The unimportant seeps away
Two nurses getting married within the month
Sparkles on fingers
One asks: What makes it last?
You answer, LOVE. And add, kindness.
Such a wistful smile.
The one who's wife to a dairy farmer
who takes blood wonderfully
saying, people are easier than cows
Who borned all but her first
Also easier than cows.
Meds in the early ayEm. Your name?
Laughter sounds so good at two O'Dark.
Saturday, four days without food/water
How fine applejuice tastes!
Day five! Puree: chicken, carrots and potatoes
No Thanksgiving ever better.
The last day, you ask for take-home
and the perky aid, white shirt/black pants and apron
brings black foam boxes. You say how good she looks;
she smiles: Some say too good! Like waiters.
True. But isn't that's what is wanted?
A red carnation would be nice.
The front spaces, foyer, halls, rooms
very like a mall. Upscale at that. What visitors see.
One could pray not to see the rest.
Or one could. And be glad.
17 October 2011
Posted by puddle at 10/23/2011 07:19:00 pm
Friday, October 21, 2011
Kind men and women
The doctors wear white coats
of armor, not to be confused
with those who wash you and
steal your vital signs
Though everyone listens to your
Or what they can find, hear, fear
And check your ankles
The movements in your gut
as well attended to as your mother
did when you were two
It's hard for them to tell you why,
though what is easy. You have to ask, and even
then they stumble a bit ~~
You have no uniform, no key
Your bum hangs out --
You have no dignity
Occasionally one. Brought
in from a back yard bar-B-Q, yellow shirt
black lead apron, going about biz.
Too bad I can't see.
He swings the screen in front of me.
You've seen that bird, then?
Oh, yes. But I thought it belonged to someone else.
Internet, eh? and laughter. That laugh keeps me
through the next five days.
A doctor in a yellow Izod shirt.
17 October 2011
Posted by puddle at 10/21/2011 05:40:00 pm
You sit, wrinkled in the bed
trying not to clutch at the tubes
feeding you pain
In fairness, they asked
explained the good cause
From noon, minute to minute
hour after hour
the desert of pain stretches
waterless, withering, bitter, burning
And weep, though you wish to howl
howling would upset the sweet keepers
who worry about you
Burning salt sand
leaks from eyes
nose, misery blocked
Holding on for life to the
softest bear in the world
gift of the softest heart
At four, they call it off
and go home
Tomorrow's good enough,
17 October 2011
Posted by puddle at 10/21/2011 05:03:00 pm
When the bone man comes
He brings a mirror
You recognize the likeness
He doesn't exactly ask
if you're ready
A whisper like the dry rustle
of autumn, leaves
The question hangs between
From spring into summer
summer into fall
the girl falters
the crone takes over
At night, after dark
the fingers explore
caverns under the ribs
cradle of hipbone
hills and valleys of the spine
knobs of wrist and knee
Flesh fled, face collapses
everything woman about you
going and gone
Almost ready bone man
Come again soon, tea's
nearly on the table
17 October 2011
Posted by puddle at 10/21/2011 02:04:00 pm
Wednesday, October 12, 2011
Saturday, October 08, 2011
Saturday, October 8, 2011 7:02 PM, EDT
We are all set to go to New York on October 30th. Mommy, Daddy and Ally are all going! Ally is actually excited about the trip...even though she remembers what happens at the hospital...we are very lucky that she has such a positive attitude.
The Wednesday before we leave we have to start injecting Ally in the leg. In the past she has been really good about getting her shots. However, the past 2 rounds have caused her legs to have nasty allergic reactions. The injection site gets very red, swollen and hard. We will be giving her benadryl around the clock, which will make for a sleepy Ally.
We have also convinced our neighbors to open their trick or treat doors on Friday, the 28th. We are hoping our friend Max can join us (it is just 3 or 4 houses). We will also bring Ally's costume to NYC with us.
We are still trying to help Ally gain the weight back that she lost when she was sick. It is very hard for her to eat a large quantity (although tonight she ate an entire avocado, a serving of egg noodles with parmesan cheese, a slice of turkey, a cup of Kool-Aid, and a bowl of popcorn....VERY unusual night for her, but hopefully it will become more common). We have a sticker chart to help motivate her.
Last night we went to a local theater and saw Jungle Jack Hannah. Ally LOVED the animals he brought (her favorite was the penguin) and she loved staying up way past her bed time. We have also gone apple picking, a quick trip to Canobie Lake Park, and Ally is still loving school.
That's all the news for now. I'll update again when we get to the Upper East Side!
Posted by puddle at 10/08/2011 10:00:00 pm
Tuesday, October 04, 2011
Grateful for 8 hours of uninterrupted sleep!
Slept from two to ten, solid. No one woke me at 2:10 to take blood. No one woke me at three to add a new drip or two to the IV. No one woke me at four to find a new IV site because the old one shut down and/or they needed two IV sites at all times. No one woke me at four to take vital signs. No one woke me at 4:30 to take blood. No one woke me at five to weigh me. No one woke me at six to give me a heparin shot. No one woke me at seven to introduce themselves and ask if I wanted a bath or a change of linen. No one woke me at eight to give me a vitamin B1 pill, four vitamin D pills, and half a blood pressure pill. No one woke me at 8:30 to offer me puree cream of wheat, puree scrambled eggs and jello. No one woke me at nine to ask me the last time I had a bowel movement. No one woke me a nine thirty to ask me if I had a history of high blood pressure. No one woke me at nine forty five to ask me what I felt like when I decided to come in to ER.
Posted by puddle at 10/04/2011 03:48:00 pm
How to have fun during hospital stays. . . .
Evidently because of some highly publicized incidents of medical screw ups, it is now vital to check who you are before giving medications, or drawing blood, or letting you have a test or procedure. As a consequence, you are asked upwards of fifty times a day to tell them your name and birthday.
Everyone's bored out of their skulls doing this. You are. They are.
Day three, someone asked who I was, and I said Susan Sarandon. Made her outright laugh. As for myself, that first time it was totally unplanned. Then I started working on it.
One two a.m. blood draw, the young man asked me whose birthday was on September 18, 1940. I said Catharine the Great. Also, Mary Queen of Scots. And Lauren Bacall. He said, "Well then, it must be a good day to have been born," And we both laughed, and I disclosed my *real* name. And protocol was kept.
In five days, I passed not only as Catharine the Great, Mary Queen of Scots, and Lauren Bacall, but as Monika Lewinsky, Goldie Hawn, Sophia Lauren, Barbara Bush, Jack the Ripper (after a *really* long, painful afternoon), and Hillary Clinton. There were others, but I forget.
Also, there's the "alert and oriented" drill. . . . Do you know what day it is? Who is president? If you say it's 1999, and Clinton is President, you pass. And two people grin. . . .
Posted by puddle at 10/04/2011 01:27:00 pm
Thursday, September 29, 2011 5:36 PM, EDT
We have lots of good news!
First: Ally's bone marrows are clear!!
Second: Ally is HAMA negative!!! They want us to be in NYC on October 31st for 3f8. We really wanted Ally to be able to trick or treat in Concord, so we asked if we could go the week after. We are still waiting to hear back. (It might seem silly to push it back a week just for Halloween, but some of you may remember we had to be in NYC for Halloween last year, and Ally missed trick or treating...except for some REALLY nice neighbors who let her come early, she is very excited for Halloween this year, so we thought...we have already waited 6 months for 3f8, what is one more week?) As soon as we have more details I will post again.
We have heard back: Ally has to be in NYC for Hallowe’en. :-( So, we are thinking of having a costume party before we go.
Posted by puddle at 10/04/2011 01:23:00 pm