Nothing = Everything

When there is just nothing where does one begin? My nothing is full of somethings that when put together seem to leave no time. When I clear out the clutter in my brain it just feels like a blank space. No witty observations, no real ideas for creativity just the mental equivalent to ... .

Create! my psyche screams and then I'm kicked in the belly by this new little one and my mind is back to the to-do lists and everyday. I am mildly obsessed with making "art" out of the everyday but sometimes its obvious that this point of view is just nothing special. Create! I look at her picture and then realize I do not care if its something to anyone else. She is the absolute love of my life the thing that makes my voice louder...steadier. I cannot go a minute without thinking about her or hearing her voice in my head; the perfect soundtrack to my day. She's here and there in her entirety constantly in my line of sight.

Beautiful, Droning, Tribalism

I was clearly the only pregnant person there. Not feeling old but like a weirdo out of place at a weirdo convention.

New To-Do List

1. Grow baby without growing my ass - at the moment only marginally successful at the 2nd part.
2. Make phone calls - car guy, tv guy, random computer that keeps calling us.
3. Get car fixed.
4. Pick out new car.
5. Return old car - good riddance. I do not like you anymore.
6. Worry about L.'s health.
7. Stop worrying about L's health.
8. Cry because I'm worried about L's health.
9. Write a to do list to help myself from crying.
10. Feel like an idiot for crying at my desk at work.
11. Cry more for feeling like an idiot.
12. Promise myself today is the last day I will cry.
13. Think of an excuse to explain why I am crying. It doesn't matter, they know.
14. Loathe life - then realize it is pointless because it keeps on moving with our without my permission.
15. ...

Predictability is the Spice of Life

We don't talk about those days much anymore. After it happened we used to sit around and reminisce in the misery, if you will, but as time passes we barely bring up those days in conversation.

Its a bright, sunny day out and L. was up early. In fact, I was still dreaming when I heard her frog-in-her-throat voice saying Mommy. We did our normal routine, eat, dress and then out the door. Our twenty minute car ride is pretty much the same each morning; predictability is my specialty these days. We were listening to her music talking and singing to each other and then I had a memory of those days last year. It made me sit up a little straighter but not pay any better attention to my driving. My phone rang and it was her daycare. We were carrying L. down to the CT scanner. I had gotten no less than 5 phone calls from the management and teachers at her school concerned about her. These days are a somewhat sleep deprived blur but I told her that L. may have cancer and the CT will check for any masses which might be the cause of her tremors. I have no recollection of her response to this news. I had to go and take care of my girl.

I looked back at her laughing and singing to the Wheels on the Bus and tears continued. Not a lot and they were not out of sadness but gratitude. I wished I had a glass of water or could do something to stop my slow trickle of tears but I just kept flashing back and forth between these bits of time. I continued to sing with her and tried my best to enjoy this predictably, perfect moment.

Feedback loop

Dear Amis:

I got your reply but have not found the time to post it on my blog. Maybe you will when you read this?!?

I looked at the tree you have been talking about in Wyoming. Aahhh, prairie wildflowers with the mountains as a backdrop - magnificent! I hope we get to visit this place together sometime; our gowns will be flowing in the breeze and L.'s little basket of flowers will cover the pathway. It's quite an image.

I've been thinking too much lately...nothing new really but I've found that if I really meditate on the thing that seems to be bothering me most I usually get to the root of my problem. This theory of life is a double edged sword...this psychological/intellectual journey makes me pretty unbearable to live with while its ongoing but once I've gotten through all the sludge to the core I really notice a transformation. I think this is the only way to live honestly with myself and others. I was listening to NPR the other day and they were talking about mindfulness meditation and focusing on ones breathing to keep centered. I've done this plenty during yoga but what he was saying just threw me for a loop! In his explanation, the purpose for the meditation was so the brain stays focused on the breath and all the little thoughts are ignored. I cannot ignore my thoughts and think it would be counterproductive. My thoughts about my environment and every day life are what make my day interesting. Here's my question...how can this idea of meditation enhance my search for truth in my daily life?

What do you think? Write soon.

Love,,, Janet

T.I.M.E. and M.U.S.I.C

Dear Amis:

Its been too long between letters and I'm sorry for not writing sooner. My voice feels strong these days but my body isnt. I'm stuck in this cycle of perpetual motion just moving in circles. Constant movement has its ups and downs. Time generally goes by superfast but once the movement slows there I am, still, looking at my calendar slowly turn. I don't wear a watch anymore. It is too tedious to look at the hands move about the face.

I'm listening to music a lot and my choices seem directly related to the weather outside. Sunny days are Jimmy Cliff, Lee Perry or maybe M.I.A. On wintery or stormy days I turn to Coil (of course) or other thinking music. There are many days that I just do not care to think about the choice of music so I listen to the 1,000 or so songs that I have on Itunes via shuffle. Its actually helped me to find some music that I forgot I had or to reconnect with songs I hadn't listened to in a while.

May seems to be a slow moving month. There are a lot of anniversaries happening this month, only one is particularly pleasant. After the year we have been through, I've decided that anniversaries and holidays are nothing...and everything. Explanation you ask?? Here goes - holidays mean nothing to sickness that require real treatment. It just makes you slightly more depressed when you think, oh its my birthday and I'm in the hospital getting my chemotherapy. Or reflection on anniversaries...comparisons to the year before, the passage of time and how you got to this moment. It is inevitable for time to be more valuable especially when it has occurred to you that the number of minutes, seconds or moments here are limited. As I've told you before this time thing has really sucked me in. I don't want time to move faster than I can handle but this month seems like its going slower than any and I wonder why? I cant help but take the most cynical view that I'm so looking forward to our little girl's birthday and 1 year anniversary of her clean bill of health that time is tricking me making it seem to be going slower. I guess the realization that its not time that is tricking me rather its my own mind is a good thing. I can remind myself to enjoy the hard days as well. Somehow...

I promise to write sooner next time. You are always so prompt with your replies. Do you mind if I post them so we can get a string going? I would love to see the running conversation.

Love,

Janet

For the record

Ugghhh…That was honestly the hardest thing I’ve ever done. Probably even more difficult than letting L. go for her surgery last May; I guess because I knew she would be coming back. The vet was really nice and very supportive and actually was in tears as well. She told me before and again yesterday that letting him go in a dignified way is really the best thing we could do for him. They took him back and put the catheter in and then gave us some time to give him treats and say goodbye. He was down in about 5 seconds after she started the infusion. I held his head and told him to be a good boy – I always say that to him before we leave. We stayed for a few minutes but pretty quickly I started to feel weird because he was gone. Weird gut feeling after he was asleep was that we didn’t do the right thing but I was able to pull it together and remind myself why we were there.

We cleaned up his things, and the house. There was definite sadness but also true relief. No more poop in the house, no more blood from him licking his legs, no more dog hair etc. It also gave me a lot of comfort to see how happy he was the moments before he was put down. He was excited to go for a car ride, smelled around the vet’s office, ate a bag of treats and a Snickers bar and was with us as he died.

L. came home around 7 and noticed his things were out of place but had enough distractions so it wasn’t a big deal. This morning she asked for him; she kept saying puppy and poop :). I told her puppy had to go bye bye. We didn’t want him to but he had to last night. You could see the wheels turning and she gave me a little shrug of the shoulders but she is easily distracted. It went from puppy very quickly to kitty then BUBBLES!!

Flaming Lips + Me = Love

I've listened to The Soft Bulletin about a million times but yesterday I literally stopped what I was doing to re-listen to this song.

It goes:

What is the light
That you have
Shining all around you?
Is it chemically derived?

Cause if it’s natural
Something glowing from inside
Shining all around you
It’s potential has arrived

Looking into space, it surrounds you
Love is the place that you’re drawn to
Looking into space, it surrounds you
Love is the face that you’re drawn to

What is the light
That you have
Shining all around you?
Is it chemically derived?

I immediately thought of L.; her light and potential have most definitely arrived. I began cataloging my experiences, moments of time and life really in terms of Flaming Lips songs. God Walks Among Us Now was listened to on repeat that night with him. When I was pregnant I sang Rainin' Babies for 9 months and it was the first song our little girl heard. Felt Good to Burn has the most subtle poignant lyric, "I wasnt waving goodbye, I was saying hello". The first time I heard it I cried and did not know why. The Yeah Yeah Yeah Song, is unfortunately on a Kraft salad dressing ad but the song still moves me and I've listened to it 100 times or more. Wayne says, "With all your power, what would you do"? The Flaming Lips have changed my mental make up. Wayne, Steven, Michael and Kliph...

How do you deal?

I used to watch TV with my mom and when we would see sad or inspirational stories she would always tear up. I never understood it. We didn't know these people and how could someone be so attached to a runner or a football player to tear up when they won the race or game? She would just laugh and tell me that some day I would understand the emotional expression. My mom is overly emotional bordering on kookybird so I just assumed her personality had been twisted in this way. I hate to say it but now in my own kookybird way, I understand it.

I figured it out when I heard that story on NPR where a woman's son was a normal active child then was diagnosed with Ecoli and in three days was dead; I understood and teared up for her. Those coal miners that died in West Virginia and China, I was engrossed in their story and felt genuine fear and grief for the families that were left behind. That gasoline platform that blew up in the Gulf...when I heard about the 11 men that were missing, my first instinct was that they were blown to bits in the explosion but when I heard the woman speaking about her missing husband I grieved, teared up and hoped that maybe he would be found.

Once your life is changed in an instant, it is a gut reaction to feel something for other people who have had this experience. On May 11, 2009 my family and I were skipping merrily down the lane dealing with everything life had to give us and trying to embrace each day but once the calendar turned a couple pages we reached a hairpin turn. Now when I'm faced with these personal tragedies I have some experience on how to deal with them whether I want to or not. I'm waiting for the day when L. laughs at me for tearing up at a run of the mill news story. Maybe her experience will teach her how to deal before she is my age.

Buddha on PBS

All things and I awaken together.

This moment seen directly, there is nowhere else than here, the only gate is now, the only doorway is your own body and mind. Nirvana = the quality of this moment.

Time Pie

In general, spring is my least favorite time of the year. The ground is still squishy and it could snow or rain at any minute. True, the birds are singing again, the rabbits are chomping on the clovers and the sun is out later making the days seem longer but it all feels like a tease. Spring can be summed up like this: the days warm up enough to trick me into wearing flip flops but by the end of it my feet are freezing!

This year after the snowbanks finally melted I feel like the change of seasons has been a real awakening. Compared to last year, I'm trying to make time stand still and savor every moment of the spring season. I even looked up the definition of the spring solstice on Wikipedia; it was way too wordy and technical for me to get anything out of it. I guess I should have known that Wikipedia is not the place to look when one is trying to define a feeling. I am constantly going back and forth in time looking at what I did before and after 5/14/09. I then compare it to the same day, month, hour, even minute the next time around. I inevitably feel more sentimental about my experiences; I even mourn slightly for the melting snow which means winter has ended. That season and moment is gone and I wonder what it means to now view my life in these pie-shaped pieces of time.

... !!!

Total and complete frustration bordering on exhaustion...

__________________________________________________________

Total and complete joy bordering on exuberance!!!

Does that require 3 exclamation points you ask {D&B}?

Yes, yes it does. Our girl walked today!!! 3 more - in your face Grammarians

Defiance Ohio in New Jersey

Lately morning feels like I'm not winning. It's like I know a lot...lots of missing.

There's a skyscraper take over on 34th and Civic Center Blvd, and I can't go explore out of fear. The same old fear and the same old doubts like why cancer scares the hell out of me.

This time, this year is bigger than us; it goes on long after we're gone! This cancer has taken it all out of us, made us look at our lives through new eyes...i love you in so many ways. You taught me to give, to lose, to love, to be lost and now how to want.

I held your shoulders. We cried when we got the news. Soon we can say, that was last year and we were so scared. Astrology says it will be fun to forget last year in the New Year. So when it becomes May, we'll all walk together.

This time, this year is bigger than us; it goes on long after we're gone! This cancer has taken it all out of us, made us look at our lives through new eyes...i love you in so many ways. You taught me to give, to lose, to love, to be lost and now how to want.

Thoughts - not fully cooked

At this point the idea of having our daughter at home in order to avoid a hospital stay is just laughable. Life lesson #1: Hospitals are unavoidable. In fact, hospitals and doctors can actually be a good thing. The disorder that our little one has affects 1 in 10,000,000 (that's 10 million right?) and somehow these people know how to treat it and get her better. Medical science is remarkable. I often wonder why in the hell would these doctors and nurses want to work in this field - pediatric oncology is pretty damn depressing but to literally be able to save a child is beyond life giving.

I'm beginning to think differently about all these drugs that she has to take. Everyone has told me as time goes on things will make more sense and it will get easier (--> see previous post about my feelings on time). Our choices are as follows: 1. give her these meds and hope the side effects are minimal OR 2. Don't give her the drugs and the OMS (1 in 10 million disorder) goes untreated. So the latter is not an option. We have to go on faith that these recommendations are correct and in her best interest. We do not want our child experimented on like a lab animal!!! Then I realize that experimentation with other kids is how we have gotten here today. I've gone from hating these drugs, being skeptical of them, and envisioning them killing my angel's insides to accepting them for what they are. A temporary cure to what ails her. We will wait and hope that in the future we will be less reliant on them but for now they are her lifeline.

T.I.M.E.

I asked him what quantity of time is smaller than a moment? He said a second...I've had moments that have lasted for hours. That thought made me smile because I understood and could relate. Time can be a real bitch sometimes. Its always there but constantly moving. There are all these different kinds of time to quantify and qualify existence here. I thought up a new kind of time that I'd never known of before. I've experienced it but never labeled it as such. Cancer-time.

Cancer-time makes moments hours and hours into brief moments. Its not all bad though; those really bad moments in Cancer-time tend to blur together. One year in Cancer-time goes by really fast. There is so much to do that you don't even notice the moments turning into hours, days or weeks then finally a year. Cancer-time does not move in a steady pattern like normal watch-time. Its swirls, turns and flips back on itself making the whole thing more unsettling. When Cancer-time takes over, I feel like I've just gotten off a roller coaster; I'm steadying myself, fixing my fly aways and trying to find my footing.

At night it is peaceful and easy to go to sleep even when in Cancer-time. The problem is when you wake up. Usually regular time tells you it is 2am and that means there is 4 more hours to sleep until the day begins. When Cancer-time is in effect, that 4 more hours is a distant vision that is intangible. Sleep = peace = time used wisely. Cancer-time really fowls up this equation.

I guess the worst thing about Cancer-time is that there is no end. It is always moving in its erratic way making those under her spell feel continually unsettled. I wish there was a cure.

Get out of my dreams

If a tudor style building could be made of giant tan and dark brown stones, then this place would be considered a tuder. It has a half circle driveway and is an historical building of some kind. I've been there 3 times now with different people. The first time we went it was us 4 travelers. We took a bus into German horse country. They let us off where the paddock met the road. The Hanoverians and other warm bloods were out grazing. We had to walk down the main road and take a right to find this German landmark that we came to see. The 2nd road is wooded and shadowy, unlike the open country from the 1st road. We see the building and we are here.

The next time I visited the tutor-stone-building I was driving in a convertible sports car with the top down (of course). I'm not a lover of sports cars, especially convertible ones but this is Germany and we had an opportunity to cruise the Autobahn. We drive by down the wooded road and pass the unnamed space but I go back. Not knowing how I got there, I get to see what is in the backyard. There are college students and other hipsters milling about the gravel walks past the small flowing streams. The last time I saw this place was last night. I didnt visit but I was telling some friends about this place. I realize that this is a dream sequence within a dream. I've seen this place so many times that it has to be real.

Todays to do list...

1. Wear make up to make self pretty.
2. Clean skeletons...I mean old clothes out of closet.
3. Run to make self thin again.
4. Make 21 month old walk.
5. Take out trash.
6. Nag husband out of inaction.
7. Clear files off desk.
8. Enjoy the sunny snowbanks of New Jersey.
9. Take a vacation from the sunny snowbanks in New Jersey.
10. Find new house to live in.
11. Call my sisters.
12. Get hair colored to make self pretty.
13. Get oodles of digital pictures developed.
14. Communicate with friends.
15. Hate work.
16. Love work.
17. Microwave meal for dinner.
18. Finish 800 page book.
19. Zone out.
20. Love my family.

Songs for her

Rainin' Babies - Flaming Lips
Mozart
Beautiful Boy - John Lennon
Watching the Wheels - John Lennon
Wild Flowers - Tom Petty
Day-O - Harry Belafonte
Baby Steps - Luke Vibert and BJ Cole
Death or Glory - The Clash
Greystone Chapel - Johnny Cash

TBC...

In circles

I've been observing her for months now...each visit i see her and wonder about her backstory. her baby has overly round checks and a hat to cover her thinning hair. I assume she is the child's mother. her hair is greying and her skin looks slightly tired. her dress looks as though she pulled out the most comfortable clothes she could find in the 5 minutes she had to get going in the morning. The closet light is too dim sometimes! Her little girl isnt so much a baby as a small-big-person. She is more put together than her mom today; her flowered overalls, cute little girl shoes and ruffley shirt distract from the tube she has that is attached to a back-pack sized pump. Although she can get around her mom carries the back-pack for her so that her darling can play with the wooden cars that slide around on the table.

It is clear that this little darling is sick but is her mom sick too? i delve into her backstory in my mind...I start with her getting married in a perfect ceremony. Nothing too fancy but she is clearly European so I imagine some castle in Austria or the Chech Republic as the backdrop (I guess a castle is pretty fancy). Then freedom of married life; a partner to explore and travel with. Mostly she now has someone else's mind to delve into and pull out the emotional matter; thats the best part, knowing what is in another's mind and being able to anticipate the thoughts, movements and other business of life. Here - today - she is alone with her baby girl, her noisy pump and the illness. Not even those cutesy girl clothes can negate that. backstory again: I figure she used to be an athlete maybe a swimmer or tennis player based on her physique. She seems intelligent so she must be well read and so caring to her little one so maybe she was a teacher. Yep, this woman did some meaningful things with her time as an individual. Has this girl's mom become a person of unfulfilled ambition, desires and personal goals? When you sign on to be a parent letting go of that marital freedom of castles, seas, exploration and intimacy is put on hold but once this sick child entered the family what happens to mom (and dad)?

Next month, they will be there again maybe Dad will come along as well. I hope so his backstory is already nearly complete.