Oh My..... A Good Place To End this Journey.

June 17, 2004 was the beginning of what has been a long arduous trek though the Cancer World Mountains.  12 years ago.  Half of Mary-Elizabeth's life.  She is going to enter her 24th year in a day or so. It is time to let that new chapter not be about Cancer World. 

She was 12 when diagnosed.  Seems like such a long long time ago.  Seems so unfair and so sad and yet her last 12 years have been astonishing.  Mary-Elizabeth has grown into a special and amazing young woman with a deep understanding of the universe.  She is kind and loving and has suffered more loss than most her age.  

Many of her contemporaries have said good-bye to Grand Parents, even parents.  Few have had little people in their lives dies long horrible deaths. Few have drawn unicorns with five year old and not been able to build Legos with them a year later.  Few have seen contemporaries die. Few have had end-of-life discussions with their parents. Few have mentioned what needs to happen at their funeral. 

It is time to put Cancer in the back seat for a bit.  Find the future path. Find the place where plans can be made.  Try to learn how to say;  "next year" we will.......  

The writing will not stop.  It will reform in another universe.  It is therapeutic for me to put words on paper.  If they are on paper, they can be revisited when necessary.  Sort of like a dictionary.  It holds the words.  I don't have to memorize everything.  I can have a place, a basket, a drawer, a special mountain top, a piece of beach for things to reside. 

Mary-Elizabeth Sierra Lanham is a fully functioning human being with a bright future. 

She is leaving Cancer World Today.  I will be the repository and the guard.  She can move forward with only good things in her life. 

The END.... a good ending. 

Vigils....

We wait, we wonder, we watch, we fiddle, we pace, we glance over our shoulders, we wait some more.   We check our phones, we check our Facebook, we look for new e-mails, we look for new text messages, we look at Twitter.  Somewhere deep in our souls, we know what we are waiting for, and we don't want it to happen, but we can't stop it.  We can't change it.  We just wait.  

Two weeks ago Allistaire left Seattle Children's Hospital for the last time. Sometime early this morning she took her last breath.  True to Allistaire's sense of self, she fought for those last few breaths. 

Allistaire was not ready to go.
Sten wasn't ready for her to leave.
Jai never imagined she would have to leave so soon.  
Solve was certainly not wanting to lose her baby sister.

I don't even know what to say. So I will do the next best thing.  

The Allistaire I knew and came to love believed in magic..... She found it in her short life. 

The vigil has ended. 

  

Allistaire

Sad:  Me

I have been looking for the words to express the feeling when you know someone you have buried deep in the special places in your heart is not going to remain in the physical world.  To learn a six-year-old girl, one you have grown to love is dying, make me Sad.  

Sad. A simple three letter word.  A word with long meaning within our lexicon but still,  only a word.

So I look for meaning. 

Oxford English Dictionary Etiology of Sad

Old English sæd 'sated, weary', also 'weighty, dense', of Germanic origin; related to Dutch zatand German satt, from an Indo-European root shared by Latin satis 'enough'. The original meaning was replaced in Middle English by the senses 'steadfast, firm' and 'serious, sober', and later 'sorrowful'.

The original meaning of sad in Old English was ‘having no more appetite, weary’. The word comes from the same root as Latin satis ‘enough’, the source of satiated, satisfactory, and satisfy (all LME), and the idea was similar to our expression fed up (early 20th century)—of being unhappy through being too ‘full’ of something. The word then developed through ‘firm, constant’ and ‘dignified, sober’ to our modern sense of ‘unhappy’ in the medieval period. In the 1990s ‘You're so sad!’ became the refrain of every teenager in the land, often to their parents. This use, meaning ‘pathetically inadequate or, was not completely new, and had been around since the 1930s.



Shakespear:

sad (adj.) 1 serious, grave, solemn

sad (adj.) 3 downcast, distressed, mournful, gloomy

seriously, gravely, solemnly

“how sad and bad and mad it was - but then, how it was sweet” 

Robert Browning

Sometimes it is okay to sit with the sad.  The tears that come, the moments of pressure on your chest so heavy it inhibits your breathing, the need to eat something chocolate.  

I will take a deep breath.  I will light another candle. I will try to help in some concrete way.  

It is so hard when it is one of our own.  
Another Deep Breath. 


Every Moment of Light and Darkness is a Miracle.  Walt Whitman

Sometimes it is too hard to stay connected.

Sometimes it is just too hard to connect to Facebook or other parts of the Web. 

I would love to open the site and not see how many angels have been born. 

I would love to open to not see how many kids have been admitted for unexpected reasons. 

I would love to not learn some new and "special" side effect.  

I would love to be able to reach out and help a mother who stumbled  across an old Valentine.  Such a small item can mean a day of heartache. 

I would love to not read that a child is about to find a new set of wings.  I would love to have words or pictures or signs I could send to the mother and family. Something that would make a difference. b 

It is not an option for me.  I am either connected and life is hard and discouraging and terribly sad or I am blind to the hardship and suffering.  I walk away sometimes for a little bit but then we all need some shelter out of the meteor shower.   

Then I seem to be pulled back.  While I have the luxury of not being in the heat of battle, the battle and struggles are not far away.   It is like a haunting.  You catch glimpses out of the corner of your eye.  Just a momentary visit by a demon. Something that reminds you to be wary. 

I guess I will plunge back into Cancer World. 
Even though Seattle Children's does not like me.  Here is the most recent love note. 


I need to review with you both visiting standards and visiting protocols.  I understand you’ve done some remarkable work supporting both families and patients.  That said we need to insure that there are never any occasions where families or patients are visited without the needed approvals.  Simply said there can be no cold calling or spontaneous surprise visits to hospital families and patients.  I’d like the chance to review this with you and look forward to that opportunity



Just love these people sometimes. 

The Meaning of Everything.

Lent is starting.

Yesterday was my Father's Birthday.

The Rain is coming down.  

The planets are appearing to be very close to each other in the Morning Sky.

Trump is winning.

Hillary is not.

Plants are up too soon.

I don't know, I feel like I am on the verge.

Verge of Change.

Verge of Adventure.

Not sure what it really is but it is.  

Things have been over the horizon for so long. Hanging out there waiting to happen.  No real ability to grab on to something or to create any tractions to move one way or another.  There are moments of clarity and then they slip over the side of the mountain and disappear.  No matter what direction I head, the maze does not seem to open up in a meaningful way.  

My dear friend Alison told me once to "trust the motion".  One step, one rock, one inch.  Head in a direction and see where it takes you.  Trust in the motion.  Keep inching forward.  Know it is possible to plunge into a deep crevasse but sometimes there is something magical at the bottom.  

Cancer World put a stop to life as I knew it.  It kept me in suspended animation for an inordinate period.  In order to bring any sort of sense to live you have to step off the moving walkway.  Step away from what had been your trajectory.   

I have to keep moving forward and trust in the motion.... 

Bright Sides

"Look on the Bright Side"

I am sure I have said the phrase a million and one times.  I am certain I have heard it a million and two times.  It is sometimes said without thinking.  It is in our repertoire of things we say when words fail us. It is an easy thing to say but a hard task to accomplish in most instances.  It is okay to feel sad and afraid because sometimes horrible things happen.   But the gift of time often allows for healing, understanding, and acceptance of any bad situation. 

Sometimes there is no "Bright Side".  Sometimes both sides of a penny are dark and gloomy.  It is not always possible to happy about the fact your child has relapsed AGAIN, and the odds are similar to the odds of winning the Power Ball.  I know there are times when news hits me in the gut so hard, I can not breathe.  I am shocked in a time in my life I don't think I can be shocked by anything.  It is so hard sometimes to ramp myself up to see a friend, or break some news to the family or worse yet, to your child.  
I am not talking about our family.  Things are going great right now.  Mary-E is cooking along and will graduate after only four years of schooling.  She will do so being ever so close to graduating with honors.   She is ready to take on the world in one way or another.  

But day after day, week after week, I am holding my breath, knowing this will never be a solid state of being.  Many say to me "Look on the Brightside." "Don't dwell on what could happen."  "Don't be pessimistic."   While knowing each day could bring new cancer or a new side effect is not being pessimistic. A bit of well-placed pessimism is simply my reality. It is just that little niggling voice sitting on my shoulder reminding me to value and enjoy every day.  It lets me forgive myself for my many imperfections, my never organized house, piles of self-reproducing laundry,  my endless to-do list.   
It makes me try harder to do things that make a difference in people's lives. It makes me balance what I want.  I want to spend time with people that make my life richer and more interesting.  My house is not perfect, but six people are coming for dinner. The lamb is a bit spicy but then why did God make sour cream? 
The bright sides of my penny bring me back to this moment in time. This is where I stay, knowing the penny, no matter how dark, is still a work in process.  There is a good chance it there will shine on both sides.  

Sorting Chrismas over the

I think we have more than enough.  Let us all be honest, I have always been a Christmas freak.  I love things that are different, unusual and not ordinary.  Over the years, especially during the Cancer Years, there has been neither money or time availability to go and seek out new things.  We have had to have small trees, fake trees, dog and cat and kid proof trees.  We have not had everything out in a very very long time.

This year we are taking the time and going through everything.  There were years we did not take down Christmas and things were packed in different boxes and they were missing their buddies.  There were probably  20  "Christmas" boxes.  To be a Christmas box all you have to do is have one such item in your hollow space and you are thusly marked.  I have done some boxes over the years, and the labels don't make any sense anymore. 

I am surprised at the memories invoked by the ornaments.  Only one from my childhood remains. Several given to me by family and friends over the years. Some from my Teaching years, Thank-you again, James, John and Judy.  Some to Mary-E. Some to me.  Some from me to Mary-Elizabeth. Some from Mary-E to me.  

It is a strange power a piece of glittery glass or a piece of colored and glued paper can hold.  Each contains the spirit of Christmas past and the power to carry those spirits forward.   I have come to realize how powerful those memories can be.  Some from BC (before cancer) some AC.  It seems mind boggling.  A Santa, a small ugly scary as hell Nutcracker head, a beautiful tree, a small old little girl.  It is all good.  

Like all things, it is worth spending a few moments with them.  Pondering if they will remain part of the regular line-up or be sent away for someone else to enjoy.  There will definitely be fewer boxes.  I do know it has been a good exercise to pull them all out.  All of them.  I have found very few duplications. Only filler ornaments, placeholders, space fillers but basically, they are unique, special and filled with great power. 

Back to work. Nine boxes filled, inventoried and numbered.  Two are Mary-E's for her new home next year.  It is all good.