I think we see the end of the Tunnel

I can see. 

I can hear it,

 I can taste it, 

I can feel it. 

The end is near. 

I am ready but I am not holding my breath.

When I was a law student, My parents lived in exotic locations… like Canada and Switzerland.  One of Dad’s benefits was that we could fly three times a year to visit our parents.  It was a pretty wonderful perk.  We would hop on planes and head out to great vacations. 

The thought of those times was pretty exciting and if I thought about what happened after the last final, I would lose focus.  So I learned to slam a door tight until I was done.   I knew what was behind the door but I did not receive the key until everything was wrapped up.

So…. The door is slammed shut…

So here we are the remaining tasks before we are given the key.

1.     Endocrinology

2.    Big appointments with SCCA

3.    Port Removal

Three things. Three tasks, Then we can look through the door.  Look at the other side. Look at the  world again.  Not confined by all the Bone Marrow Transplant rules.

She is already stepping out.  She has broken rules hard and fast rules……. She had sprouts on her sandwich and

Raw cookie dough….

More shocking and normal things live beyond the end of the Tunnel and we are ready

y.

                                                                                                                                                              

Hope and then....

Lulu Ysarua Martinez is feisty and fighting!! She has went day and a half no blood pressure meds fever staying at 99 she has 3600 white blood cells she has a 1248 anc which means she now has cells that can help her body fight the infection..she is moving her eyebrows shaking her head flaring her nose and coughed. ..her lungs are still bad but they do have ventilator turned down to 4 0 and she is fighting machine and breathing on her own.. her sisters and dad and close friends all got to see it but the best was her baby sister Rylee Ruth squealing SHE IS DOING IT....today we cry tears of joy and high fives around the whole icu unit...Lulu is a fighter



Lulu Ysarua Martinez had rough night oxygen kept dropping changed ventilator to normal breathe pattern which she needs to be on she has had no other movement so they moving her down for mri...doctors are concerned we are seeing reflexes and not movement.she has been off sedatives for 3 days...
Ugg.....3.steps forward and 2 back will post after mri


Who knows.  It is just what it is.  This fighting cancer thing is so hard. But then maybe life is schizophrenic for a reason. 

Every day, every moment, we have to keep focused on what is important in our lives.  Keep in the front of our minds the important persons we love and value. 

Life changes. Stuff is just stuff. Connections with people is what is important. 

Just saying. It is the little dots and squiggles that make our life whole.  

Hoping Status Quo is a good thing...

Meb is still working on getting better.  I am watching a very difficult recovery, even though it is a cold.  Like last time, it takes extra time for her to get better. 

Considering how much Lulu has been through, high fever, strep, full lungs, collapsed lungs, blown pupils, unhappy kidneys.  It is hard to know how her recover will transpire.   Very very slowly I am sure.  

Hoping today is a day of explosive ANC activity.

Lulu is still the same....pupils are responding but no body movement....her baby sister Rylee  and Payton have been by her side today...they have been talking and joking and crying out to their sister to give them a sign a flicker anything to show them she is there. This was hard to watch and hear...sisters fight...sisters bicker...sisters irritate the crap out of each other...today was humbling...sisters begging for their sister to survive to fight to live another day to go shopping.. fishing...and to braid their hair...they are here lulu waiting for you. ..give them a flicker...

Hoping

 for lots of rest and some stability for Ms. Lulu.  

World Cup is Like Childhood Cancer

Lots of player
Lots of teams
Lots of ways to win
No one really understands how it works
It doesn't happen that often but when it does it is all consuming
It comes back no matter how hard you try to avoid it.
Many people are there to watch and help.
Confusing 
Life Consuming for some and totally ignored by many
Needs a large group to cheer you on
Needs a large group to cheer you up when things are bleak
Needs constant fans to continue when it is over
There are Tee Shirts/Jerseys
It never seems to end once it has started
It can slip into the back of your mind for a while but there are always reminders
Some inevitable violence is expected



But most of all I don't understand it... at all. It comes with no warning and is a constant source of excitement and sadness. Some win, some lose there is no way to figure out who is going to do what. 

Sometimes it just "is" 

Just Give Me the Answer!!!!!

"There are no Answers only Arguments"

Famous words were spoken by Neil Franklin to his Civil Procedure class in about 1983.  One of the OCD CPA's that decided adding a JD to his name would be easy.  He wanted answers, he wanted certainty.  He was in the wrong world.  

Law is about change, pushing the envelope, finding new inroads to old systems.  It is about the creative expanding the boundaries of the old set rules.  Many things we take for granted were taboo and forbidden many many years ago.  Women voting, blacks voting, Asians and Whites marrying in King County, being able to marry anyone you wish, despite apparent gender designations. The law is giant amoeba and we are better for it. 

Medicine is very like law. Always learning, always changing, always developing.  Not that long ago the barber was bleeding patients and they were doing transfusions with goose quills and lamb blood.  Yes, we have come a long way but we still don't have all the answers. 

Childhood Cancer is a huge amorphous amoeba.   Every single person I have ever encountered has a Diagnosis Story.

We noticed _________________
We took the child to the doctor______ times.
We had___________ tests.
WE had ___________ scans.

They did not find it until________ months later. 

Common story.  Horrible stories. Great fear that if they had found it earlier something could have been avoided.  We know that if you catch the cold early the pneumonia won't come.  Wish that was the case with childhood cancers.  

Yes, early detection is good but boy I don't see it makes the treatment shorter or cancer is avoidable if you find it early.  It is sort of like being pregnant.  You are or you are not... 

There are so many times during this process that no answers are readily available.  Very few tests/scans/examinations or other woowoo magic give you the answer.  Most likely it is a process of elimination.  

Meb's sort of went like this.

Swollen Optic Nerves
Not high blood pressure
Not diabetes
Not kidney failure
Not leukemia (first blood draw)
Might not be a brain tumor
Mass sitting on the top sagital sinus
Maybe a brain tumor
Not metastasized bone tumor
Not a brain tumor

Oh, leukemia.  (second blood draw 2 months later in anticipation of biopsy of mass.

For years, yes years, Mary-E has had her blood cultured.  Only once has there been a positive.  They were used to exclude fungus, bacteria, lots of nasty things.  Only after something grows do they investigate further.  It is a long process and there are no answers, no easy answers. It is not TV medicine.  

We all want the easy answer.  Actually we would take any answer.  Even if it is a bad answer because the not knowing the answer is crazy making.  Not knowing makes me go to a dark scary horrible place. I meet many of my other peeps there.  The mom's waiting, wondering and hoping for a good outcome but we know. We know better.  We know it is bad.  
But then we think "It could be worse".  I remember sitting and waiting to see the brain surgeon at Seattle Children's.  We sat near the Hem/Onc desk and I watched the small bald headed children  being checked in. I said a little prayer and thanked God I was not waiting to see "Those" doctors.  Boy was I wrong...  

But we did finally get an answer.  We knew what the problem was and had a plan.  A way forward. It was a good thing.  

Knowing is always better than no knowing.  After you know you feel like you have SOME control over what is going to happen. It is a good thing.  Each and every time there is a levee in the road and you are frustrated and ready to pull out your hair and kill the next person who tells you "no we are out of blue berry muffin, you remind yourself that you know.  

Sometimes knowing has to be enough. 

Thoughts on Change

"Everything in the universe is constantly change and nothing stays the same and we must understand how quickly time flows by if was to wake up and truly live our live"

Jiko, from A Tale for the Time Being.

But how do we know if we are awake?  I guess that is only one of the questions.   Do our dreams prod us? Do our fears let us know we are slacking or we are awake?  I wish I knew the answer to all of that but I suspect the definition is different for everyone. 

I know we all expect to live each day to the fullest if we are that sort of person.  I think some are more bold than others.  Some are risk takers, some are risk avoiders.  I know for sure my daughter is a watcher and thinker and she does not make a move without much cogitation.  The whole menu is read before a decision is made.  I am more of an impulsive person.   Both methods are good things.

I suffer from a fair amount of PTSD from the whole cancer twice in a decade thing.  It changes you but I think it does so for the better in lots of ways.  It certainly opens you eyes to another realm.  I am entering the alumni role now.  We have graduated, so to speak.  It gives me time to reach back and try to help those in the midst of the process. 

I remember when MEB was first diagnosed and St. Joseph came to the rescue.  The school, the church, the families.  The first on our door step was Rick Boyle.  He has been at our side during all of it, the first diagnosis, the relapse everything. It was an amazing gift and will never be forgotten.  Not to say everyone did not do something of great value at the time.  He was part of my new tribe.  He knew in that way only one in the same situation can know. 

After induction to the tribe a creation of new part of your being happens.  Sort of like a growth.  Maybe it would be better to think of it as some sort multiple new neurons in your brain.  It can't be removed and it sort of becomes your friend.  That bit of growth gives you more compassion, more insight, more creative powers, the ability to help those in your tribe survive.  It makes you know things no one wants to know.

So our time in Cancer World keeps changing who we are and what we see and do.   I am trying to make it less of who I am.  I don't know if I will ever be free of the worry and anxiety it produces.  I find that if I can help someone else and focus on their journey, it helps. A lot.

Change is always changing.  Time is always moving forward. I have no control over much.  Mostly I think I have control but then I am very very wrong.   Everyday I try to do positive things for others.  Good things for myself and keep moving through life   Awake.

Euthanizing Children

Euthanizing Children

I could not type those words yesterday.  How do you type those words.  While I often think we go to far in Cancer World and don't step back and let kids have comfort before they re-boot, never did I think about letting them ask to die.  I never even thought about it. 

So let me process this.  So we have a child. They are terminal, they have pain that can not be managed with any amount of drugs.  They are able to ask to die and I have to agree.   

Can a three year old ask? I know a pretty smart three year old, Alistaire.  She has had cancer twice in two years.  She just wants to be a big girl. She asked her mom if she was going to be a big girl.  Does she even understand the word "dead".  Even if she asked would anyone be able to "agree".  She just wants me to upgrade my phone games.  Alistaire does not care about the License Plant Game.

Mary-Elizabeth is now an adult in the eyes of the law.  (She has been an adult much longer than that. )  More than once during the process she wanted me to make it all stop.  There were lots and lots of time that the pain was beyond what could be given to her safely.  Not just once but more than once.  Lots and lots of gut wrenching, "I am going to kill these people if they don't help her kind of pain." 
New Computer system, nurse on break, new codes, no one on the floor, no one responding kind of deal.  I was very very very very clear that I knew the code and I would administer the meds if they did not respond. 

Oh, dear, if that pain was constant, would I agree to her request to be done.  To die.  Oh, see it is good for me to write through.  Would I agree?  See.  It is possible to get to the point when it makes sense. 

But what if there was hope?  What kind of hope?  Hope for snow day or hope that Santa is real kind of hope?  This is certainly a topic for another day.  

Okay.  Enough.  Time to plan the activities of the week.  Walking, cleaning, job hunting, package wrapping. Waiting for the Christmas Cards to arrive.  The usual.

Oh, I better add Laundry...

 

Landslides and the little pebbles that follow.

Whidbey Island let go a couple of weeks ago.  In the middle of the night for no apparent reason.  Bits and pieces of it continue to slide.  I looked a the before pictures and it is clear this was not the first slide and won't be the last. 

The land below the cliff was covered in trees and well vegetated.  It had been 100 years since the last slide and everyone had forgotten.  Our memory can fade and we don't remember who put the big stone ups at Stonehenge or what happens if one group of people declare another should be wiped out of existence. (I am an old history major.)

But the important thing is memory fades.  On a conscious level at least. We as a group no longer see a saber tooth cat and have a flight or fight reaction.  We see it as novelty and empathize with our fore fathers and mothers.  Simple. But somewhere deep in our souls we carry the fear of the next cat attack.  We have transferred the fear to other things both big and small.  Cars, disease, asteroids hitting earth, choking on Cheerios, germs. 

Cancer Parents have another list of fears.  Scans, blood draws, MRD results.  It has one big word attached to it,  RELAPSE.  It haunts us and with good reason.  As a parent when the first diagnosis happens, we focus on Remission, then cure.  We work on getting our child out of intense treatment and into maintenance.  We hate being in maintenance because the visits and blood test that reassure us of continued remission are few and far between but it is a sign we are headed to cure.

But as parents living in Cancer World there is this niggling fear RELAPSE is living around the corner still.  It is alive and real and very present.  It is that small pebble letting loose from the slide signaling the big slide. 

It is not possible to live any sort of life in fear of horrible things happening all the time.  You have to let your life move forward. It is important to keep making plans for the future.  It is not mentally or emotionally possible to keep watch all the time.  It is necessary to keep the RELAPSE monster at bay.

We are not even close to the edge.  Things are beginning to firm up and it seems we are going to be on solid ground.  I am going to look away from the once crumbling cliff and hope for the best.  When I encounter a mom or dad with a hopeful story about how long it has been since the last dose of treatment, I am not sharing our story.  We never know if the cliff is going to present itself.

Plan Execution: Begin

We meet today at 3:00 p.m. with Dr. Chappie the "guy" that likes to drill on children.  I figured it would take at least a week to be scheduled but the gods are with us.... I hope.

 

This is a diagram of Hell.  I can't figure out where I am right now but somewhere in the miserable middle.

I am having compost being delivered to distract me.   4 yards... I need to be really distracted...

Here is My Plan.

See Chappy (guy that likes to drill holes in children) before the month ends. Make it very clear that she needs to return to school this fall come hell or high water.

Schedule surgery by Mid-May.  Keep doing the Pred taper and resist the urge to go too quickly.
(Prednison is the cause).

Figure out what to do with all my new garden space cleared by little Asian garden guy.

Finish Blood Sucking Fiends. Do laundry. Take a shower. Order those really beautiful begonias from Brecks.  No specific order designated.

Turkish News...

i'm not neutropenic anymore :) and the Mc test results: engraftment is %80-%90 okey..

 but i dont know that is that have to be %100 ? is %80 - %90 a good rate? i'm excited.. 

still have Bk virus :( and vomiting.. maybe when this problems end they let me go to home :)  it has been 2 months that i'm here..

So Guliany is the 4th person person in her country to have a double cord blood transplant.  She asks me these sort of questions and then I ask our docs and then they tell me and I tell her and then she tells her doctor. 

Sort of funny how that works.  Sort of amazing how the Internet works and what a great gift it has become. 

Good news from any part of the country is more then welcome.

Go Gonzaga and why are they not number 1?  Could someone please explain that to me.

  

Greed.... Level Four: We just want to be back to Norma

Virgil:

 saw multitudes
to every side of me; their howls were loud
while, wheeling weights, they used their chests to push.
They struck against each other; at that point,
each turned around and, wheeling back those weights,
cried out: Why do you hoard? Why do you squander?' "


 We live and die by protocols.  Long pages of stuff that determine what is next.  Dates of treatment, types of treatment, rules about when there will be treatment.  It is pretty amazing how difficult and complicated it can be for all involved.  More then once I got us prepared for a hospital stay and then the "counts" were not right.  Or we just went in for a blood draw and ended up staying for a week or two.

Oh Cancer parents are greedy and we hoard and squander like the best of them.  We pursue health and any small moment of laughter.  But most of all we want to be normal.  We want to look at a calendar and know that what we think is going to happen will happen.

We mostly want certainty and we live in the most uncertain of all worlds.  The world where nothing looks right.  Sort of what I imagine an LSD trip would be.  Everything is the same but just off.....  We are tired of not knowing what is going to happen or in some cases not happen. 

A hard part of level four is the isolation.  Most is self imposed but some comes from people being afraid to ask you what is going on....   No one wants to ask the question and find out how bad things have become.

My sister called and asked what was going on and I realized we have been doing nothing.  Mary-E is processing and in a dark hole.  She sees no reason to get out of bed right now.  It takes her a while to figure out things but there is an appointment next week about her GVH and she is worried.  She has failed to taper 3 times and really really wants off the prednison.  She knows it eats your joints and causes other mega problems.  So she withdraws, I try to tempt her with short forays into life.  It will be fine.  It is just a bit of a rough patch. 

For the record, I never took LSD and the day the guy that invented it gave it to the medical students at GW.  My dad was in the hospital recovering from appendicitis.  

A certain Kind of maddness Creeps in after a few Days at the Hospital

Being inpatient at the hospital when your kid is being treated for cancer is so difficult. It is impossible to maintain your sanity and sense of humor for more than 6 days.  Max.

First you have the worry of being there if it is not a regularly scheduled admission.  You are there because you child has some unusual unknown bug.  While you might be there for a fever, in Cancer World they are dedicated to finding out exactly what it is.  They draw blood cultures and bunches of Petri dishes full of lemon jello sit around and stew until something grows. 

Lots of times nothing grows and you are still stuck.  If the fever is high enough they put the kids on a broad spectrum antibiotic, sort of like a Z-Pack.  The shot gun approach.  These kids are then stuck until they finish 14 days of the stuff because usually it is IV.  You are already going to be there 8 days beyond sanity and it is just a bone they throw you and they don't mean to ever let you out. 

Then a few days in (3ish) they figure out what you really have and a new type of antibiotic is chosen from the shelf.  It has been pre-tested to see what works the best.  Then you wait again, sometimes the days start over.  

At that point you know for sure that you are there at least two weeks.  But.... it might be longer depending on how low the ANC is at the time.  If the counts are lower then 200 your are stuck like a bug on a windshield waiting some more. 

So you wait.  You wait for every blood draw. You wait for every temperature reading.  You wait to see what comes from the kitchen. You wait to see if she chooses "the dress".  You wait for rounds before a shower because they might have some news. you wait for the platlett YOu  wait for the other closet of shoes to drop. YoU wait for the next does of meds.  You wait for a pint of blood because the bone marrow is not working. You watch more  Dark Shadows and fold more crane. 

During the waiting you worry.  Why is the bone marrow not working? What do we have to do to get out? What did we do wrong? How could this happen to our child?  Did we make the wrong/right decision? Or my favorite:  Remember that day you helped someone put Round-up on their yard and two weeks later you found out you were pregnant and now your child has leukemia?  

When you know how long the admission is going to be 80 days for transplant or 4 for chemo, it is very doable.  You go in, you know the drill, you know the goal.  Because you are headed into a certain specific direction it is survivable   This is what we have to do to go home. 

It is when you have no idea, no control, no sense of when it is going to end.  If there is a bug then you have to be in isolation   (Not even able to use the on-floor bathrooms. I decided not to say "pee on the floor") Everything anyone brings you has to stay in the room.  Everyone has to gown up. Your secret supply of real food has to be heated by a nurse.  You cannot even go to the family room and fill your water pitcher.  It is a fresh kind of hell.  250 square feet with a bed, a chair beeping things and lots of other crazy stuff. 

The minute you hit the room after an eternity in the filthy and more then disgusting ER, you are fighting to get out.  

The other part of this whole thing is they keep talking to us about Shangri La, Or the New hospital wing.  Even though the Cancer kids raise millions in funding and their care pretty much carries the hospital budget, they are in horrible outdated rooms.  They are awful. I don't think they have touched them since the 80's  Mauve has gone there to die.

 The bathrooms are closets, the fixtures are falling apart. Because they get to move into the new part of the hospital, they quit fixing things on the floor about a year ago.  There is a room where 4 people stay that has not had hot water for more then a year.  "too  much to fix it" I was told by the plumber to just use Purell.  Hello!!! anyone read all the information about how HAND WASHING is the only really way to go?

Oh, dear, see I still suffer from Long Stay in the Hospital PTSD.  When I read about someone being there and slowly  unraveling as they wait and pace and try to maintain their sanity, I start to go to that dark place. 

Okay, enough.  Just know until you have done one of those hard long stays, you will never ever understand.  But thanks for trying...... 

My Rebbecca is on the East Coast

So Pam S. a parent from Seattle Children's thought I was talking about another Rebbecca being treated at Seattle Children's.  Seattle's Rebbecca is 18, had a transplant and then disappeared from the floor to the ICU. Kids disappear.   

It is another example of a subtle problem we have while in Cancer World.  The hospital won't admit there are ANY children at the hospital because that would violate HIPPA.  We live on the floor and many at Ronald McDonald House, chat in the clinic, Facebook each other and have a myriad of ways we ferret out information about what is going on with "our kids".  


I can remember coming out of Mary-E's room one night and there were a million people in the room next door. Doctors and Nurses and portable machines.  There was huge amounts of frantic activity.  The next time I was out of the room no one was around.  The room was empty and it looked like a war zone.  No nurses were around and it was just creepy. 

Kids just disappear and no one wants to talk about it. How sad is that.  Some one's child is critically ill or has died and we pretend nothing has happened.  Trying to "protect" cancer parents from what they know is a possibility from the moment we ask about outcomes may need to be reconsidered. 

The silence scares us more and it removes a very important support system from the family. 

Deep Dark Woods and Desolate Ice Flows

Quote of the Day

"Polar exploration is at once the cleanest and most isolated way of having a bad time which has been devised."
--Sir Ernest Shackleton


Betsy Hawkins and graduated from high school together.  She has moved over here and we reconnected in a nice way.  She has a great husband that loves to clean up my back yard.  But more then that she has been an emotional resource. 

One way she helped was to connect me to another friend of hers going through a Bone Marrow Transplant.  Roger is an adult, had a different kind of cancer but there is a certain sort of camaraderie among those of us in cancer world. 

Well things went well for Roger and then the Leukemia returned, with a vengeance.  He is coming to the end of his treatment and is struggling to travel from Salt Lake to Missoula where he lives.  There are lots of issues with transportation, insurance companies, sufficient oxygen for the journey, I can't even imagine.  None of it is good.  None of it is happy.  None of it is easy. 

I just happened to check in on their blog: http://bonemarrowboogie.blogspot.com and found the quote that starts this entry. 

I love it.  I reflects the isolation and desolation of this journey.  I had always pictured us in deeps dark woods with a myriad of paths and lack of good signage!

Maybe we are on an ice flow.

Say an extra prayer for Roger and Candie and they slide across this most of desolate places.  May they find a warm and welcoming shelter.

 

The sun is up, I should walk the dogs.

The Plan:

Water the yard.
And feed the birds.
And floss my teeth.
And fill the yard waste bin with something I don't want.
And do some more desk clearing.
And do some laundry and hang the sheets out to dry.
And rake up the irritating pine cones on the side of the house.
And do some gardening on that side and maybe plant a tree or two. 
And decide what outing we can do today to get Mary-Elizabeth to do some more walking.
And call my mom and tell her about the newest news on Featherville Idaho.
And look on E-bay for Ice cream forks lest I ever return to the 1988's.
Contact my newly found Barnes Cousins and send them some pictures of the family and plan a mini-reunion.
Go on an archaeological dig and find more pictures in the basement and everywhere.
Talk to friends.
Figure out something for dinner.
Finish War and Peace
Finish the two quilt backs so I can start a new one. 


Reality:
Some watering,
Potatoes dug,
The yard waste filled a little bit,
The Russians are almost to Moscow
My cousin Jane came over.  She is moving to Seattle and lots to say.
Trip to Snohomish in search of a desk for Mary-E
A lovely lunch at a Thai Restaurant,
Lots of walking around a cute little town,
Child not exhausted and would like to go again.

Sometimes the things you end up doing are much better than the Plan.

 I think the Spaghetti Nebula just happened without a plan.

Defining where you are and where you come from...

Facebook wants to know where my home town.  I don't have a good answer for that question. 

I have lived or my parents have resided in the following places since my birth 12 years ago. ( I adhere to a different calendar than the rest of you.)

In Chronological Order:

Born in Council Idaho
Riggins Idaho
New Meadows Idaho
San Antonio Texas
Parma Idaho
Moscow Idaho
Alexandria Virgina
Washington DC
Ogden Utah
Spirit Lake Idaho
Dalton Garden Idaho
Hayden Lake Idaho
Caldwell Idaho
Oxford England
Midland Michigan
Mt Pleasant Michigan
Dietrich Idaho
Walnut Creek California #
Moscow Idaho
Ontario Canada#
Zurich Switzerland#
Boise Idaho
Seattle Washington
Eugene Oregon#
Cancer World

# Only visited Mom and Dad.

Now how do I pick a town.  My favorite, length of stay, best memories. 

It is so hard to tell.  Each place made an impression. Each place was important in shaping the person I am today.  It is all such a jumble. 

I realized on these last few years that while I have lived in Seattle for almost half my life this is not my home town.  I claim it, I love it, I have been as happy as anyone could be but I don't think it is the last stop on my journey.  I am always looking for the next place.  Some think that is weird but then look at all the places I have missed in my life journey.

and we are here on this strange place called Cancer World.

Until we are off of Cancer World we will stay put.  I will water my trees and grow Grampa's beans.  I will re-purpose my life and will continue to think about what it next.  I guess this picture says it the best.

Day Forty.....

On May 30^th of this year. Ruby Smith, 17 left her body after fighting cancer for 9 months.  She has been gone from her body for 40 days.  I cann’t bring myself to say that she has died.  Her body is dead but she is so alive in so many ways for some many people. 

http://www.youtube.com/watch?v=iaFApfOw0GY  She left some great photo's for us to remember her journey.

We spent some time with her mom this last week-end.  During her visit I moved a small number of leftover beer in a container and dropped all the bottles.  They shattered on the concrete.  Her Katie said she seemed to be surrounded by shattered things.  Bottles, glasses, mirrors.  It was a bit disconcerting for her. 

I said that Ruby was trying to get her attention.  I was not joking. When my Dad died, I did some reading and was struck with the importance of the 40th day. My sister was reporting lots of weird events that made me think he was not really gone.

The 40th day seems to cross cultures. It is steeped in so many cultures. It is believed by the Buddhist that Siddhartha died and 40 days later finally transformed. Jesus ascended into heaven on the 40th day. 40 days and 40 nights, lent, the flood, Moses on the mountain. It is everywhere. Some think that in the ancient world time was calculated on nine 40 day cycles to make a perfect solar year.   It would make sense that after 40 days we would be more ready for our loved ones to move on to their next stage, or place or what ever we believe. 

I think this is Ruby's 40th day.  I know from talking with other’s that when a teenager is coming to grips with their death they are very worried about their moms and their dads.  They understand their death is going to forever shatter the life they have had with their family.  I cann’t understand how Ruby’s parents feel rifht now. I don't really have a clue.  I have only looked into that abyss but never entered.  I know they  are changed, deeply and profoundly.

There is no way to keep that from happening. The life with a child can never be put back exactly as it was before.  It will go back together but not as it had.  Maybe the "shattered" bits and pieces Kate has been seeing are a reminder of how fragile life can be.  A reminder of what happens when we lose the person we love the most to something as awful as cancer.  I know this is not politically correct but mom’s have a different relationship with our children. We grew them.  We felt them move, we felt them kick.  We have a connection with them that is unlike any other connection we ever experience.  Their loss is life transforming.

I have to believe that even though there are shattered pieces around us, we can, with time, see that the pieces can be put back together. No doubt they won't be the same, it won't look the same, but it will be functional and have a different kind of reflection. 

Ruby has been breaking things to let her mom know that she is ready to go but to help her mom find a new direction, a new reflection.  A new way to see the world.

Waiting Makes Me Crazy

I hate to wait.  I hate not knowing.  I wonder if I should push for an earlier surgery and totally screw up M-E's summer or if I should let it go as planned?  How important is her state of mind during all of this.  I can assure you her approach to all of this is great.  One hears that kids are in inspiration.  Maybe we should try to get back to that place where the situation is what the situation is and go from there.  No speculationg, no spinning of worse case scenarios, no deep and abiding fear of the unknown but rather a simple this is the plan.
 
I don't want to be wrong here.  Do I trust the bevey of highly educated professionsals that know what they are doing? Do I just worry and let the event unfold? Do I ask too many questions? I am going to try that trusting thing.  That "I am not in control of my destiny but rather I am here for a purpose and to learn some important and valuable lessons."  Don't fight it, just let it unfold.
 
Off to listen to a hearing at the Court of Appeals.  Mary-Elizabeth is off picking blue berries.