One less Portrait of Dorian Gray is in the upstairs room.

Someone really really special left very very early.  I mean, lets be honest, when I first met him, 54 would have felt ancient. Now it feels young. Kirk never aged.  We knew there was a portrait somewhere!

Kirk Hadley, or Captain Kirk to many, made a quick exit.  He died.   He just up and died.  I don't know much but I do know he will be missed.  Not that everyone won't be missed but I will miss him and feel the loss for a long long time. 

He smiled, he questioned, he cried.  He was a whole person.  He was someone you could not see for years, maybe decades and then slip back in to the same easy place in your relationship. He was my friend and I loved him. 

In early May I was questioning the wisdom of taking a trip with my daughter across the country.  Cons:  No visible means of support, ancient car (with good tires), family members upset that I was not working.  All the grown up reasons we don't do things.  It did not make sense to drive 5600 miles on a whim.  

I received my call from Lori and then  I knew.  I could meet a sudden end or Mary-E could relapse again or have a stroke or a pulmonary embolism or be on a college campus and have some gun toting maniac come shooting.  

Pros: Time, I had time.  Mary-Elizabeth had time.  

Not everyone has time. Time is precious. Time is not to be taken for granted.  We all assumed Kirk had time.  More time. Lots more time.  His time ran out.  He doesn't get to see his grandchildren. He does not get to play another round of golf. He does not get to see his son's continue to grow into fine young men. He does not get to have his mom's pot roast.  

Time, not money, or jobs, or new cars.  Time is the defining factor.  Time is painfully limited but seems infinite.  

Time with someone is limited.
Time without someone is infinite. 

Capt Kirk.  You will be greatly missed.  You were loved and appreciated and valued.  

 

Slight Variations and the Twilight Zone

We grew up on the Twilight Zone.  I remember an episode where a women's house was invaded and she was trying to get rid of the tiny invaders.  They had little laser type things. They pestered her and it was sort of scary.  As she pounded at them and smashed them with a broom the camera scanned down and there, on their tiny little space ship was an American flag...

One of my first lesson's in perception..

We have been in the Twilight Zone for a long time.  Sometimes it seems normal and might look normal but that little pesky laser thing keeps hanging around.  You know it is there but just not sure where.

I am looking out my window and am looking at my amazing two trees.  Each is a Katsura, a Japanese tree, round leaves, early leaves on, early leave off.  Each fall the trees turn and are a little bit different.  One if more orange and red, the other is more yellow.  One is taller and more narrow.  Their bark is a bit different  They are not identical upon some serious examinations.   

As a species, we look for differences. We spend a whole bunch of energy trying to be "like" everyone, yet somehow different.  We want the similarities to be positive unless there is a problem, real or perceived, and then we want to differentiate.

  It sort of goes like this:

My child has the good kind of ALL (like there could ever be any good kind of Childhood Cancer.) 

They found three 10/10 bone marrow matches.   The cells are coming from Australia.

There are no cells we are going to have to use cord blood. 

We are in a trial. 

There isn't a trial but we are trying to get on one.

We have never had to miss a day of chemo because the counts are good.

We have missed whole doses of chemo because the counts were so good.

This is a relapse post Lymphoma Treatment.

This is a relapse three months off treatment. Six months, two years, 57 months...

This is a new secondary cancer.

All are variations on a theme but they are still the same terrible childhood cancer.  It just sucks.  No other way to put it.  It just is a bad bad thing.  

The good part is that we come together, we recognize the pain, we gather our resources, we help each other, we learn about how wonderful and generous the world can be. We find the strength and help of God, in all his/her iterations is ever present. 

I guess I choose to make my Twilight Zone look a bit less dreary....

Moms

Moms. They come in lots of different varieties and we have all had one or more in our lives. Women that share a special love for us. Women that tell us the secrets of life. Women that let us know when we have crossed a line or push us across. Moms come in lots of shapes and forms and sizes and ages. (More than once I have held a very honest 3 year old that has gently probed my soft stomach and said " Your soft and Squishy") I always hope they remember that warm lap.

The Moms I have been meeting are a very special kind. They are on a mission like no others I have ever met. They have had their worlds attached by words like Liiukkemia, Neuro Blastoma, Ewings Sarcoma, Aplastic Anemia and more. They each have a tale. A moment when it all changed. A moment when all they could see ahead of them was slumping presidents, exploding space shuttles, burning towers. A moment that changes the world in a way that only a mother could imagine. The moment when they realize their child could be the subject of the "We need to think about focusing on making your child comfortable" discussion.

The Moms don't think about that conversation. They think about the Road Map, the protocol, The New experimental drug. They find cavernous pools of positive energy and mine it like moles in the center of the earth. They keep bringing it to the surface and focusing it on accomplishing the next task. Can they find the right drink that will help with hydration? Can they find the perfect food to counteract the calcium loss? Do Dip & Dots really raise ANC? Can their child tolerate one more vital sign check before they simply loose it? Is a bath a possibility?

The focus is intense.

So is the resentment.

Why is Fortune Magazine doing a cover story on how Prostate Cancer is being cured? Would childhood cancer be cured if Lance Armstrong's child was stricken?

What about the little girl whose mother holds and rocks her while she vomits endlessly post chemo. The mother who had to hear that the reason her darling 2.5 year old girl started to stumble was that she had a brain tumor the size of grapefruit that needed to come out. The little girl with the port at the top of her bald skull. The port that takes the chemo directly into her brain. What about the quiet yet frantic walk of the young freckled woman endlessly pushing her 18 month old on the lilypad while she waits in the hospital, on the floor 10, 20 sometimes 30 days for the ANC to come back from 0?

What about the never ending frantic guilt and resentment that comes from knowing the kids want their moms to be there all the time and knowing that at some point in time, Mom's need to leave, if only for a shower and a cup of coffee.

What about the resentment that comes from being out of the hospital and realizing the world has gone on without you? No even notices how haggard and tired you look , or how very very sad you are.

The only ones that truly know are the other Moms that rock the children, get the ice, search the snackcart for an acceptable treat, call the nurses, make up the sleeping chairs and fitfully wonder if they will ever have to have "The Conversation".

While the Cancer Mom's are dealing with their world crumbling, there are the MOM's that are getting us through. They call and do laundry. They bring us coffee and listen to our endless ramblings. They tell us stories that make us laugh. They remind us that even if the world has gone on without us it is waiting for your eventual return.

I certainly could not do this without all the help from everyone. Thank you one and all.