More Than One Kind of Eclipse

Totality.  It really is a misnomer.  Some things are so powerful that even when they totally cover an object, the object can not be obscured.  It can be changed and altered, but it can not be obliterated. 

Totality is something that can not be explained unless you experience it.  Childbirth, seeing the 
Grand Canyon,  being with someone when they die, seeing a bird hatch from an egg, watching whales spout in the ocean, hearing a symphony play a favorite piece of music, walking through a museum and happening upon a favorite painting. 
Words are insufficient.  

But once you do have the experience, you are forever changed. 

We went to see the Total Eclipse.  The Total Experience is life changing.  During the hour and a half dozens of things become apparent.  

1. It takes a while to develop but seems to recede more quickly.  

2.  While the light remains eerie, it is still there.  It doesn't take much to light up the world.  Even a tiny bit is impressive.

3. The sun actually heats the earth efficiently.  Even when it is half-way gone, it becomes much cooler, quickly.

4. During Totality, it is possible to see the edges of the shadow of the moon.  You feel like you are under a bowl of darkness with dusk around you. 
5. Even at the darkest moments many of your friends provide much-needed support and light. 
6. Seeing the stars midday reminds you of what is in plain sight, if only you are in the right place to see them. 

7.  The Corona is much more than a flash of light. It is magical, powerful and the memory won't ever leave you. 

Sort of like having a Cancer Kid.  Parents can't ever explain what it is like. It never goes away. You live in uncertain darkness, not knowing if it will return.  The world looks the same, but there is a chill in the air. 

You are trapped under a bowl with no way to reach the edges and enter the light.  Even when Cancer "left" for good.  Despite how close you are to reaching the edge, they keep moving it.  The worry and long-term side-effects haunt your dreams and your waking moments.  There is no way to ever believe the monster will not return.  It is hiding ready to spring back if only we knew where to look and how to look for it.  

Both are an experience that changes your life forever.  

This is my Cancer Kid taking photos of Totality.  She had already been changed forever.  This was just one more thing and a great thing. 

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".  

Making Memories after Diagnosis

 There is a certain urgency when a child has been diagnosed.  We rush to do so many things. Memories have to be made and made NOW. 

What if these are the last of the memories? What if we don't survive long enough to go on our Make-A-Wish?  What if there is no time for  high school and college and marriage and the first job and the first car and the first broken heart?  What if? It is a panic that strikes the heart of each and every parent, grandparent, relatives and friends.  We have to make memories NOW.  We have to take advantage of this time, this moment, this......
everything. 

Well, take it from an expert, there are plenty of memories being made each and every moment.  Each day, each blood draw, each visit from the Child Life, Social Worker, Ukulele Guy.  Now granted not all the memories are good.  Treatment will erase many memories, but there will be memories. They will be a different kind and those that share them will be altered by the events. But  often there are bits and pieces of good memories.   

We are altered to our very core.  On a cellular level.  When your child faces amputation, total body radiation, red, blue, yellow chemo, and endless invasive procedures, bone marrow transplants,  it has to change you.  As you watch people you love perish and their loved ones writhe in  pain for moments, and hours and months and years, it is hard not to be transformed. 

Human beings are made up by the bits and pieces of who we are and what we learn and experience in life. We absorb things every day. We also are a product of what we remember.  Often we are a bit like Kimchi and need to sit about and wait until we are done.  But eventually there is a good end product.

The moment we hear the words "Your Child Has ____________________ we begin to incorporate the new "Memories" into who we are and will become.  

 It is a good reminder that we should value, treasure and work on this every single day....  

Journey Reality

so.... We are creeping up on the 3rd birthday of Pearl Anne.  She has been stepping up and working hard to be a grown-up immune system.  She did need some help and some re-vaccination had to be done.  Some times when you are two, you are so busy with life and saying "NO" that you forget to produce titters when you are given a little bit of a bad virus and are supposed to get to work. 

Anyway last week was a crazy, stressful and very tiring.  I, for one, am out of shape in the going to a million appointments at several hospital institutions in short order.  But we did it.  We have been excused from next year's appointment and are not expected back for the week-long trudge until 2017.  A very good thing.

So I managed to get myself pretty worked up and freaked out over the course of the week.  Mary-E looks great but then she did the first time Leukemia creeped into our lives.  She was in perfect health when I sent her off to college when she relapsed.  I know that with every blood draw, every bruise, every hair that falls, it could be a sign and not a good sign.  

Well this time what you see is what you get.  Thankfully.  

I asked Paul Carpenter (our favorite Aussie Bone Marrow Doctor) when I could stop worrying.  He asked Mary-E what she wanted to hear.  I said I wanted to hear the truth.  His reply to me was  "She is fine for now.  You will always have a reason to worry." 

That was not the answer I wanted.  I wanted him to say we were done. They had fixed her and we were released.  Instead, we have just been transferred from Pediatric Bone Marrow Transplant Service to the Adult. She will be closely followed for the rest of her life.  They are watching and waiting for something to appear, the next thing to be handled.  This journey is just going at different speed. It is not over. 

I, like a million families of children struck by cancer, want it to be over.....  Really Really Really OVER.  It is never over.  It is never ever really over. We don't get to go back to the time before cancer. I know this but there are moments I want to believe it is not the case.  

I think it is sort of like giving birth.  The pain of the actual birth recedes with time and more children are born.  So.... you ask. 24 months until the next big appointment. There will be some small check-ins.  She is essentially done.  But in reality she is not done.  She is done for NOW.  I wanted her to be done done.  I wanted to put away that knot in my stomach. I wanted to not wake at 3 a.m. in the morning with a start.  A deep chill of a horrifying dream. Over, I want it to be over.  

I am working on gathering the strength to go forward and constantly prepare for battle.  Even it is just by taking a few deep breaths.  I need to re-charge somehow.  One step, One moment. One thing at a time. 

Best use of my energy.  Putting away Christmas...... with a label maker as part of the process.  

We Are still here

She keeps spiking a fever. I tried to get us out of here on Saturday and failed, I failed on Sunday. We shall see how the day goes. I have some hope we can get her home.

She is very sad and depressed. She is just sick and tired of all of it. This was promised to us to be a good time and she can not see very many good times in the future. We were not ready for a 5 day hospital stay where every day she feels worse. Being forced to leave from post Turkey time festivities was just gut wrenching. I had wanted to get the tree up and I did not even have a chance to find or buy new lights. I just see my happy child leaving down a road I can not walk with her. She has gone to that awful place were I can not reach her.

Sometimes in the tunnel there is does not seem like there is hope. She is in a very dark place. I am going downstairs to see if I can spark her spirits. I am more worried now than I have ever been. She is so mad at me that we are here and feels guilty that she wants me here but feels bad that I have spend nights here and then cannot effectively work. What a mess.

She wants to stop treatment. She knows I need to work. She knows that if I don't work it is bad on many fronts but then she wants me with her right now. I hate that I can not be in more than one place.