I really Really Really Tried to Stop

But I have decided I need to check in on occasion.  Basically, life is good.  She is five years out from transplant and if you did not know better you would never know she was sick. 

No one would notice the total imbalance of her endocrine system.  A tendency to have lung issues, a loss of fertility, a loss of hair, thyroid and a myriad of other issues.        

Her skin has tantrums as small rashes seem to come and go.  Never really letting anyone relax.  Pearl Anne is 5 years old and so like any young immune system she is unpredictable. She was unable to fight off the last cold. 6 weeks, two doses of antibiotics and prednisone and still a cough. 

She has a five year follow-up next year with her favorite, Paul Carpenter, MD.  They will banter, she will complain, he will ask her questions about private parts.  It will be good. 

I continue to feel lucky to have my child with me.  I mourn and grieve over the fact she continues to suffer due to the treatment.  Was it worth it, yes.  Would I authorize the treatments again, absolutely.  Do I know I am lucky?  of course.  

Yes, she is alive. Yes, she continues to grow and mature. Yes someday she can say she is a survivor.  But I always worry it will return in some form or another.  I wonder what live would have been had she not been radiated and poisoned and poked and prodded and tortured.  What she have done with her life had four and a half of her life been spent chained to a hospital bed?  What would my life had been?   I guess we will never know. 

We have a life.  It is a good life.  Progress is being made every day.   I really have no complaints.  

I plead every day that things continue as is....

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. 

Worry

As Mom would say.... is like a Rocking Chair, it never gets you anywhere. 

It is so built into my being now.  I have seen too much not to worry.  I know I can soon tuck the worry away but it just is sitting on my shoulders. I pound it down with a box of donuts but it creeps back.  Looking for a new way to manage it but I think I have to come to realize it will always be there and be more accepting and forgiving.  Sort of like Pope Frances suggested as a good theme for the year.  

I worry.  It sucks.  I have a lot to worry about given what has happened.  Time to acknowledge it is there and let it sit

on a shelf like that stupid Elf-on-The Shelf.  I will let the Elf record the worry and report to some cosmic being that is taking care of things.  I have to let it go and begin moving forward instead of waiting for the next shoe to drop.  

Next shoe? You ask.  Hasn't it already dropped like a big bomb over ancient and unreplaceable town centers?  Oh, you must think there are only two shoes.   Once you enter Cancer World, one discovers our monster is a long caterpillar with many many legs and matching shoes. 
Time has come.  Maybe that is my New Year's Resolution.  I will put Worry away. 

Christmas. Sometimes it is hard even if things are alright in your world.

Cancer is such a horrible thing.  Many ask why I don't just leave well enough alone.  How do you do that when people you have met, and some you never meet, have a child that is dying because they have run out of options.  Parents are making decisions to halt treatment.  Parents with children already gone.  Parents that know they will soon have to make decisions they don't want to make.  

I don't seem to be able just to walk away. Too many children and families are affected.  Not millions, but even one is too many.

This is one of those years that things are great.  Okay, so the dish fairies took a day off, the laundry is waiting. There are a million things to do but in shifting priorities to "Essential,"  other things have been accomplished.  Star Wars has been viewed.  Presents opened and appreciated.  Sharing an excellent dinner with friends and family.  Calls to and from people you love and enjoy.  
Dishes can wait, boxes can be cut down and recycled, laundry mountains are a thing of art.  

I am taking a moment to make sure the coffee is good, the house is warm, and  the dogs get a good walk.  The kidlet has the rest she needs.  

I also have to figure out when I am going to see

Star Wars, again. 

Christmas Card Dilemma

Perfect Cards
Perfect Stamps
Perfect Return Address Lables

No Idea what to Write!

I have tried several things over the last couple of months, and I can't write it.  As I look over the last year I don't see much to report.  No massive events. No significant problems solved.  Losses of several family members are a drag in a Christmas Card.  I hate those long whiny letters.  Maybe I should write a haiku.  

Year has passed quick-

ly. No real news, hope remains

For a great New Year.

That might work.  

Or my other thought:

A Picture is better than a thousand words. 

It's Tonsillitis, Mono, Strep or Mumps

But my reaction to this simple sore throat is not reasonable.  Just taking her to Urgent Care and then to pick up meds made me very very grumpy.  

She is currently in bed with a very sore throat, a fever and no desire to move. It will be fine.  I will make a quick trip over the mountains and through the woods but it will be fine.  She is having her first real nasty bug since being released from her transplant docs.  Her immune system is less than that of a 4-year-old.  She is now considered "fully vaccinated" but we don't know if she has titers to the vaccines.  Yeah, did you know they can run a simple blood test and let you know if you need a booster?  One of many secret tests we learned about during the last 11 years.  
What I have learned from this experience is that my "okayness" is veiled behind a thin sheet of wet tissue paper.  All of the fear, anxiety, irrational worry and the rest is held back by a few atoms spinning around a few molecules and fibers.  

The question will be, how long before I am able to bounce back.  How long does this gripping fear last?

Hoping it goes before the last turkey sandwich. 

Cancer World Christmas

So before I begin, let's remember this entire post is from only my experience.  I don't have any significant experience with other hospitals. Also, I love Christmas more than anyone. 

What I love about Christmas is finding the perfect gift.  I have never been one to set a certain price or a certain number of gifts. It just has to be one perfect gift. It has to be thoughtful, and the

person has to know it was not random or obligatory.  Because of those rules, I sort of shy away from the tremendous gift giving to kids with cancer at this time of the year.  They are doing just fine. Lots and lots of people step up, and the kids have a great Christmas for the most part.  We all know it sucks and is hard but at Seattle Children's, nary a child is forgotten.  

So, The Wishing Rock Project is not going to do anything for the children.  We are going to continue to be there to support the Moms.  We are going to continue to visit the hospital, seek out new families and try our best to visit as much as we can.  Deliver as many Starbucks Cards, reusable bags, windchimes, and beads of endurance and, of course, some chocolate.  
We think this is a good idea because as soon as Christmas is over, Cancer is still there.  Moments of forgetting are real and necessary but having the strength to keep going is also a requirement. 

Please. after all the Holiday Season chaos is over, remember Cancer World is still there. 

Getting It

I get it.  I understand it.  I have lived it. I have experienced it. I have witnessed it.  IT has changed me forever.  

I remember when one of my favorite mom's asked if living in Cancer World had changed me in any way.  I had not thought about the changes.  While your child is in treatment, there is so much else to think about; so many things to do; so much to worry about.  You are running faster than you ever imagined you could run.   It is overwhelming and more than you can ever imagine. Recently I have been thinking about it, a lot. 

There are lots of losses balanced by gains.  No one wants to hear about the losses.  I have stopped counting the times I have read the long slow creep towards death that many children make. Death is a reality for many children.  The longer you are around Cancer World, the more loss there is.  It makes me less than enthusiastic about the success stories.  When a family announces the last dose of chemo, the finish of radiation, remission, end of treatment, the end..... of __________. I shudder a bit.  I stick that bit of knowledge in the back of brain with a reminder to check back in a couple of years, and then in five years and then.... Relapse and the terror of a Bone Marrow Transplant. 

I just get it.  I want lots of remission/success stories.  I bet there are more than we know, but we don't hear about them. There is a group of families that just finish treatment, have a party and go on with life. They know they are lucky and are not bragging about it.  
The Relapse/Secondary Cancer Gang is loud and vocal.  It is necessary because if you believe you are scared the first time, the second time is over the top. It is not like a Relapse is getting a C. Relapse if an F.  It is hard to come back from it.  You need lots and lots of A's to make up for an F. Unlike college if you flunk you can take the same class again.  If you fail Algebra II, they don't make you take Calculus 4. 

In Cancer World, they bring out bigger and nastier forms of treatment.  Things they don't want to use unless absolutely necessary.  The Nuclear Bombs and other sorts of weapons of Mass Destruction.  Who knew there were so many ways to kill. 

As I sit here in year 11, I am beginning to forget what life used to be like when it was "Normal."  I don't recognize the landscape of my life in any ...way.  I see glimpses of it when I run into people I knew from before.  I am beginning to realize I have made an impact on people's lives in mostly good ways.  I was downtown and went to Cafe Zum Zum.  I walked in, and the owner looked at me and started to scope up my favorite.  He then chided me for my long absence, telling me he was still smoking because I had not been around to give him a hard time. 
It made me smile. While much has changed, change is part of life.  It is well past time I explore this new landscape.  When the

 Cancer World Asteroid landed in our laps, it forever changed the world we inhabit.

I get it. 

The "Giving Back" piece of Cancer World

If I had a super computer or a friend at the IRS, I would ask someone to figure out how many Foundations and other Non-Profit organizations are working to help those in Cancer World. My sense is that there are 1000's.  It makes sense because so many have been affected by this disease.  

After being in Cancer World, people either flee or feeI a need to give back.  One is compelled to try and return in some way the flood of what you have received.  It is important to shine a light on the path for those still in the dark place. Send something back to help those who are still climbing out of the despair which is Childhood Cancer.  

During the darkest times of our lives, we are given so much. It is impossible to meaningfully repay those that stepped in and lifted a burden from our shoulders.   The people that did our laundry took our dog, helped with trash, fed us, brought us groceries, prayed for us endlessly, and kept us in their hearts, never expected to receive something in return.  They were gifts.  Pure grace flowing from one heart to another. 

I have come to realize a small act. A small gesture. An instant of connection can make all the difference.  While I have a bit of frustration from not being able to organize folks and make things efficient, I know lots of people are making a little bit of difference, and a little bit is more than enough. 

Cliff Notes

They were useful in their time.  I know there are folks reading this blog that never used them and don't know what they are.  To catch you up, they were the precursor to Google, Wikipedia, and instant streaming movies.  If you didn't want to read Moby Dick, ( I read it all the way through and can discuss whale blubber with the best of them.) you picked up the little yellow and black book.  

It is how some people survived college and even high school. 

But like many short cuts, you often miss something important. 

In Cancer World there are no short cuts.  No easy way out. No way to skip a difficult chapter.  To make matter's more concerning, they add chapters and change the ending all the time.  I was reading an article in the New York Times Magazine about romance novels.  Judith Krantz pointed out there always has to be a happy ending.  Not so from where I sit. 

Today is just one of those days.  Allistaire is in the hospital with a blood infection. Her mom is by her side in stark terror of what this means.  Allistaire is supposed to be getting stronger, and Jai is training for Obliteride ( a Fred Hutch fundraiser).  Sierra is locked up in isolation because of a bad bug.  Jade is not in full remission. Violet is facing an MRI tomorrow. Alex keeps slogging through chemo and is a teenager that just wants to "BE DONE!" and there are a million other kids facing "Scans" 

We are hoping to be done with our Cliff Notes but only know that we have to be happy for "NOW".  As a Cancer Mom, I see

what cancer has taken from Mary-Elizabeth and worry but know I am not alone. 

Because our children are pure gold, September is Childhood Cancer Month.  Keep them in mind.  

Back and Forth

In and Out
Over and Under
Up and Down
Happy and Sad
Joy and Sadness
Fear and Bravery
Determination and Capitulation
Despair and Faith
Agreeable and Recalcitrant
Healthy and Sick
Life and Dead
Obstreperous and Tractable


This list is much much longer.  The one that we focus on is

Remission and Recurrence or NED and Recurrence.
I thought it was bad that we don't ever get to know if "Recurrence is going to happen or Remission Sticks.  It is such a roller coaster and so much happens in between.   We are close to the four-year Relapse mark.  We have passed the 11th Anniversary of being in Cancer World.  I am finally starting to breath again.  AND THEN.

She gets a stomachache, or she is really tried or her back hurts or there is a small weird bump or her eyes keep getting conjunctivitis or ____________ fill in the blank. I don't like to be a constant complainer or worrier but I at my core I am worried.  I am worried.  That little voice sits on my shoulder and keeps telling me to not let my guard down.  I am not out of the woods.  There is no exit to this genuinely secret glen.

I visit with families that have just entered Cancer World.  I spend time with them imparting secrets about hospital living and Cancer World survival.  I go to kid's funerals.  Those that Cancer destroyed.
On one day, I visited with a mom who's 4-month little girl was born with a tumor the size of an orange and the funeral of a fourteen-year-old.  Needless to say, I had ice cream for dinner.  It was all too much.

Many think I am just crazy to keep visiting and going.  I don't want to be one of those people that walk away from family and friends when it is tough.  I have seen that happen with many.  It is too much most of the time but in reality it is impossible to do it alone.  I could never have done it without those that stepped up and lent a hand and gave at the perfect moment.

Been Dragging My Feet

For reasons unknown, I have not been able to make myself go to Children's Hospital with Wishing Rock Bags.  I have them packed, I have sorted, I have great new People Magazines, but I have not been able to go.  I plan it and then when it is time to leave, I take to my bed to watch Keeping Up With the Kardashians.  Yes, it is bad.  It can be very very bad.  

I had a million and one reasons for not going.  I was tired, I might have the bubonic plague, there is a terror alert, and I am on the top of the list. They won't let me in. The Seattle Guild Society was right, these silly little bags are meaningless. 
Then I had to go.  I made myself go.  I told someone I was going.  I had to do it.  And I did.
I went.  And I remembered why I do this.  I let someone tell me their story.  I listened to them, told them hospital survival secrets and let them know about Midnight Bacon. 

Something about the act of giving back and listening and just being there is so potent. We don't even have to know each other's names we just know.  We know the deep-seated fear, the questioning of everything that might have caused the issue. The wondering "WHY" no one found it earlier. The realization that no matter what you do or what you let them do to your children, it might not be enough. It might not work.  It does not work sometimes.  It might come back. The treatment might bring more cancer and an endless list of long-term side effects.  Knowing the fear never goes away.  Knowing the future is something other's can focus upon because we have just this moment in time.  

Life is so much more than what we had planned and more about what we can do this moment.  It's okay to watch your friend's lives continue.  Plans being made.  It is part of your stepping off the path.  

When I was in highschool, I read a Ray Bradbury short story about a man that returned to Dinosaur times to hunt.  There was required path, and you were only to kill the appointed Dinosaur.  It had been determined it would die soon and not affect the timeline.  This man stepped off the path and upon return he found a small glistening blue butterfly on his boot.  When the doors opened to return him after the hunt,

everything seemed familiar but were slightly off.  It was not the same.  It is never going to be the same.  No matter how hard we try and no matter how hard we pretend and no matter how hard everyone wants it to be the same, We stepped off the path.  

The only thing we can do is help those behind us.  
So.... I will consider myself cured of the plague, be kind to security and keep at it.  Besides, I'm almost caught up with the Kardashians. 

Rest-in-Peace....... Really

I suppose if someone dies in a war. Or if they lived a life of hardship and stress.  If they are from a country where bombs drop all the time.  Rest-in-Peace would be a great thing to say.  Simple, life-affirming, considerate. 

But... you can hear "the but" coming can't you.  
 BUT  I certainly am not tired.  I don't need to rest, except for nap time some days.  I have way too much to do.  I don't have time to rest.  I don't want peace and quiet.  I want to make a difference in this world. I want to make sure it is a better place than when I entered.  I want to find out stuff and learn stuff and grow stuff and read lots of good books and make up countless recipes and have wine on the deck, and the list is endless.  

I don't want to Rest-in-Peace.  I want to RIP through life knowing it is a precious and limited thing. If I feel like this at 60, I am sure the children we watch die, day after day have other plans.  Seattle lost another one on Sunday.  Ahmie Njie was only 14.  She was full of life and cancer.  They don't go to well very often.  Cancer is atrocious at getting along with its host.   It kills.  In unthinkable, painful, sad and depressing ways.  It takes so much with it when a young one dies.  
Ahmie is another victim.  One that touches each of us.  I didn't understand how it all worked until I was reading a book that talked about a quantum physics concept of "Quantum Entanglements."  There are those that believe particles in far reaches react with each other even when they are far far from each other.  Cancer Moms have the same thing going on with each other.  We connect when we share our stories, and we continue to feel the story as it proceeds.  We react. We respond. We reach out. We recoil. We feel.  The empathy runs deeps and long and reaches across the boundaries of the world.  

Ahmie's Mom chronicled her story and shared the ending with the world.  I don't have the ability to understand or know what Gienna is feeling or thinking right now.  I would not presume to have words or answers or even know the right questions to ask.  I do know there is an ache in my heart.  A need to take many deep breaths.  There is an empty place in the universe.  A void was left by a child that was not ready to rest.  She had too many plans and too many ways she wanted to RIP through life.  

We have become "Entangled".  

She was Surprised and I was Relieved.

FOR IMMEDIATE RELEASE

Mary-Elizabeth Sierra Lanham Named to Dean's List at Gonzaga University

SPOKANE, WA (6/12/2015)—Mary-Elizabeth Sierra Lanham, a resident of Lynnwood, WA has earned placement on the Gonzaga University Dean's List for Spring semester 2015. Students must earn a 3.5 to 3.69 grade-point average to be listed.

Gonzaga University is a humanistic, private Catholic University providing a Jesuit education to more than 7,500 students. Situated along the Spokane River near downtown Spokane, Wash., Gonzaga is routinely recognized among the West’s best comprehensive regional universities. Gonzaga offers 75 fields of study, 25 master’s degrees, a doctorate in leadership studies, and a Juris Doctor degree through its School of Law.

Among her circle of friends, this is not such a huge thing.  It is something that kids do on a pretty regular basis.  She has always been a good student and sometimes even amazing.  But it is not easy and it is something she works so hard at doing. 

Every grade, every point, every single test and quiz and report is the result of hours of study and preparation.  Radiation and Methotrexate into her spinal fluid have robbed her of many things we take for granted.  She can't memorize.  She can't keep something in her short term memory if her life depended on it.  All those people that memorize, drop the info on the page and then forget have a skill she no longer possesses.  She has to do an extended solitary process of making sure she understands and learns the material.  

She does not believe she made the Deans list and even argued with the Registrar about the posting.  

I have watched her spend every bit of her energy on being a good student.  Lots of her fun time in life was spent in the hospital and then studying or getting ready to study.  

I think back to the first time I saw the 12 inch lead door closed her into the Radiation Suite.  I knew the damaging radiation was destroying more than elusive cancer cells.  I have come to appreciate how much was destroyed.  I think it is going to be okay.  It just made the hill higher, slicker, rockier, and more difficult.   

It didn't make it impossible.