Monday, February 25, 2013

compassion, love, forgiveness

I eat well during the day.  Then I get home and work on getting fat on crackers and wine.  Or I do yoga and wake  up to sweet and thoughtful babies.  I smiled a lot today.  It was so nice-although a little awkward and odd...

I just find my life so damn surreal right now.  John dreams of an adventure across the country.  I dream of finding a home.  Aiden is always mad at me.  I tapped with him tonight.  That helped him some, but then I was putting him to bed, he went to kiss me, and was too playful I guess and banged into my nose.  All I did was say "ow"  and before I could even be goofy about it, he had thrown his blankets over his head and wouldn't stop yelling about how he was sorry and I was mad at him.  There was nothing I could do to help him understand I wasn't mad.  I think he just needs to be angry, upset, afraid at and with something that he knows will always be there.

I don't feel like I asked for, dreamed for, hoped for, too much.  I most definitely have been blessed to receive, in many ways, so much more than I could have imagined. I think of all the stories that have crossed my path in the two years since John's diagnosis:  an 18 month of bundle of cuteness in little boy pants, suddenly and inexplicably bleeding out in front of his family; so many loving attempts to have a child that ended in heart breaking loss and emptiness; a child defiant, nasty, demanding, needy, destructive and hurtful whose mother read libraries of books to learn how to support her, even after her husband up and left her;  so many mothers who lost their own fathers too soon; so many awful stories of cancer and her devil minions...I don't think we should even use the word "fair".  It pulls at something in the center of me that feels like it could be my soul.  It  makes little tears and cuts.

I miss being the one who smiled almost relentlessly. I will do everything in my power to keep that part of me alive, because my babies will love that part of me best;  because that part of me is my favorite.

I will try to find a way to fight to focus on:

for me, for my kids,

in the hopes that I will always chooses the strongest path toward life, even when I am covered in anger, tap dancing with death in ways that make too-deep connections,if not invitations to enter the fray...

Tuesday, February 19, 2013

a hundred years of hugs

Sort of like "to be or not to be", but different.  It is just frustrating that the kindest, most sincere gesture, as well as the most generic statement screaming from the magazine cover, all speak to some simple answer or understanding of pain and grief, happiness and stress.  "Easy guide to daily happiness"!!  Excuse my french, but bullsh*t.  "Follow these three steps to daily bliss" if it were a simple thing.  The entire "religion" of Buddhism focuses on simplicity- yet when you play with learning about meditation and understanding what is behind that state of bliss, you learn about Monkey-Mind and how strongly it tries to delve into every effort to relax.  You learn about simplicity as you strive to accept that everything is impermanent, not easy.

Take your regular stresses, that are NO little thing believe you me I understand how that can be:  kids driving you nuts arguing over everything, dogs pooping in the house no matter how many times they went outside, a boss who makes you feel incompetent, unnecessary, maybe even idiotic...friends and relationships breaking down for reasons that make no sense and are full of lies, covered in fear and disrespect.

Now, add the thought of your best friend and partner dying.  Your story that was yet to be written got scribbled on like the bill you left on the kitchen table and your two year old found...after finding the big black sharpie pen.  Then the cats peed on it and knocked it on the floor, where the dog threw up on it...And everyone seems to have ideas of how to help.  I want to tell them how much I appreciate their efforts, and simultaneously feel guilty and ashamed that I just don't believe that "god" has a plan and that their dad will, necessarily, go to a "better place".  What place is better than here with us??

Besides, I believe we are energy that is bound to the earth, part of the earth.  It isn't new and it never goes away.  It just gets mixed together in a multitude of ways to make a myriad of different people and creatures and things.  And when we die, our energy goes back into the bowl of ingredients to get reformed, reconstituted, remixed and reborn.  Or remade.  But it remains.

And damnit, there is NOT an easy fix for happiness for this one.  I know that I can focus on the time we have had - the unexpected years without deficits, the way he has been here twice as long as the median GBM survivor.  I DON'T CARE.  I don't think those things are enough.  I know they aren't.

But I have to go to work because it is up to me to support the family.  I send our babies off to teachers that I hope are able to understand...that I hope don't have too many other imminent issues in the classroom so that my kids' needs have to be pushed back while the in-your-face issues are dealt with.

I hate cancer.  And please don't judge me but I hate the idea of heaven.  I hate easy answers and believing that "god has a plan" because I don't plan but there was a story I had a general outline of and that has still been screwed with, even as amorphous as it was.  And it isn't fair.  And it doesn't matter.  Because babies die, mommies and daddies die.  And we spend so much time in Western Culture trying to deny and ignore the fact that Eastern Cultures seem to build their understanding around:  we are impermanent; we are imperfect, and that is all part of what makes us and all things we love so delicately beautiful.  As the Little Prince says, "that which is essential, is invisible to the eye".

 I just wish what was so essential to me could have been visible for a bit longer.  Or that I could better embrace and find strength, rather than bitterness, in the idea that only disembodied love that swirls through coloring and warming the universe, is eternal. 

I guess I just wish I could hug him for a hundred more years. 

Monday, February 18, 2013

steam rolled and trying to dance

Squashed flat, beaten black and blue.  That's what it feels like.  And looking through some horrible twisted lens.  Why did I have to have a conversation with my kids about their dad dying??  About him not being there for all the things he wants to see.  Aiden asked question after question, he wanted to know what we asked the doctors, if he kept fighting if he could live forever...Cilly cried until she fell asleep in my arms.  There are no words good enough.  Maybe there are hugs enough.  But we won't hit that number of hugs for a long long time. 

John was amazing.  He has much to be proud of.  We want to make voice quilts with him telling stories to, about, and with the kids.  I think that will be a nice way to keep him close.  And we want to get cremains jewelry.  That's what it is called: cremains.  Sounds ridiculous to me but, whatever.

And tonight I put them to bed, tomorrow I go to work.  Cilly has dance class.  Hopefully she will not run another 103.8 fever like she did last night.  That was rough.  Rough is the status quo, though. 

I did not tell the kids that this is happening for a reason.  However, I did tell them that we need to honor dad by making there be a reason.  We need to find a way to make this awful, sad, scary thing something that brings us together and makes us better people. 

That is all I have the strength for now.  I wish I could fix this.  I wish I could make it go away, but not if that meant losing John.  I wouldn't change my relationship with him for anything, not even for the pain this part of our journey will bring;  has already brought. 

“You will lose someone you can’t live without,and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”
Anne Lamott

Sunday, February 10, 2013

Hot dog

Hot dog, in the sense that there are big things afoot.  Things like my stress level...

I have decided I need a caregiver for me in the evenings for a while because it took all my get-up-and-go to drag my sorry a** up from a non-sleeping nap after church to figure out what to get for dinner.  Ended up boiling some literal hot dogs, cutting up apple and finishing the baby carrots.  I was very proud of myself for getting that together.  I just wish I could figure out how that tiny event turned into a mountain of dishes spilling over the top of my sink!  I mean, it was just hot dogs and an apple for goodness sake...

John wants a wheel chair.  And to shave his head and be like Professor Xavier.  Which seems right to me.  And friends will let us use their RV for a cross country road trip and now we are going to try to fundraise for gas and other things along the way.  That is normal, too, right?  Even though he needs help getting socks on, and falls an average of at least once a day...Ach, we never played much with normal is over rated...

I feel like I am wearing a hat that is invisible, but projects nightmares that never end.  But the only way to keep them somewhat under control is to find a way to laugh and smile.  But also to be quiet.  John is so much more positive and hopeful than me, that I find solace in not saying anything.  I want his dreams to be reasonable.  I don't want to argue for more rational ones.

All I want to do is sleep but I am afraid to sleep because that brings us one step closer to the sh*t storm on the horizon.  The pirate ship Cancer that has attack and plundered my hopes and dreams.  And I cannot even post a picture of the bum who instigated it all to throw darts at, since Cancer doesn't wear a regular face.

Soooo, the other thing I am wrestling with is the idea of finding a way to make it through the day teaching.  Without crying in front of my second graders.  They deserve the best of me and I have to dig deep to find that right now.  Times like these, I really wish I had a less intensively hands on job.  I could cry in front of a bunch of widgets or a computer screen for a while and get over it and move on, but it does  not really work that way with 7 year olds.  Of course, my love for them and their high level of need may be the only thing to get me through the day...

Thank you, void filled with a few friendly faces, for listening tonight.  I feel a little better after sending this out there.  Now I want to roll over and hug my man.  Wish me luck sleeping and send him healing and strength.  Also, help us keep our hotline to humor open and flowing...silliness and giggles help immensely.  (reading I Love You Forever by Robert Munsch tonight, again, we added some toots to the song the mommy sings in honor of Cilly's musical butt...good times for all!)

Be nice.  Don't judge. Hug and tell people you love them.  Because that is as good as god.

Wednesday, February 6, 2013


well, we did it.  Today we talked about John dying. We have both been fighting off tears throughout the day.  I hate this more than I can express.  I hate cancer.  I hate how many innocent, kind, wonderful people are lost every damn day.  I hate that my family will be one of those statistics soon.  All I wanted was someone to love and grow old with.  I wanted John.  And now I have to watch him all I can do is try to be strong and make sure with every move that he knows I love him and would marry him a hundred times over...and that shouldn't  be hard, but I'm so damned stressed that it is, just because I am Snappy McSnappington...I need to breathe...I need to curl up in his arms.  But I sleep on his left side, and that arm can't even hold me anymore'

I want to ask Glennon at Momastary if she and the Monkees can help us raise money to take some sort of trip around the country to different National Parks, or maybe take a cruise...who knows, right?  A few friends have told me to reach out to her...her blog is wonderful...John keeps talking about making this his heaven.  I want to help with that.  I know I have the strength to do that, in small moments, but how do I sustain that when all I want to do is crumble and hide?  Break things and scream?  Dissolve, drift away, become something else.  Seafoam like the real little mermaid, not Ariel.  I want to say I would sacrifice myself for him.  I don't know if I would...if I could.  I just want him to stay.

Why can't the dream I live be anything other than a nightmare...I have had enough...

Monday, February 4, 2013

the story

Our reverand said, a while back, that even if John continues to live and do well, my sadness is not a betrayal of him.  I am mourning the story we would  have made together.

Two weeks ago, John started having a hard time moving his left side.  It started small but moved fast.  He can barely lift his arm and his leg drags, catches on things, and generally gets in the way.

This weekend, I had different people talk with me about what will happen when he dies.  About being prepared for it- financially and functionally.

Today he got his MRI.  Wednesday we have clinic where we find out why these things are happening.  John's entire being is focused on it being only due to swelling that is left behind as the drugs work on the tumor.  My whole being is focused on not thinking about it.  He didn't hear when the NIH doc's said it was unlikely that he would get any of these things back.  His left side vision is so off, Sokka has started trying to steal from his dinner plate on his left side because John can't see him.  Crafty dog...

I have to help him into the shower, get his underwear and pants on, lift his left arm through his sleeve, help him down and up the steps outside.  He can't help with any of the little things going on as the kids careen through the house, so I find myself in constant motion...

My smile comes less often than it ever has before.  I am getting better at faking it for my kids, though.  I wonder about my life after he dies.  It is so hard to think about.  It messes me up so profoundly, thinking of my coming years without him.  I think I need to find another coach to date or marry so they have access to those types of resources, to that way of thinking.  But really, it isn't the coaching, it is him.  So I tried to reach out to his good friend.  I made suggestions of ways he could stay in touch, but he bristled at each one, saying that he would do things differently than I was suggesting.  It just made me realize I can't force familial relationships.  We never see him now, so why would that change after John is gone?

I don't want to date again.  I was never very good at it.  How can I expect to be better with three kids and all this damn cancer baggage?!

So I just stop thinking about it because I can't control that anyway.  And we have no idea how long John will stick around.  He is one hell of a stubborn bastard, so he could surprise us all.

Sunday, February 3, 2013

2 days

In the last two days, too many people have talked to me about John dying. I would be an ingrate if I said anything other than it has all been said in love, support, and tenderness.   It was.  And it was taken that way.  And I feel myself change.  And quiet.  And, in ways, retreat.  We find out in the next three days what is happening.  He can hardly walk.  I have to dry him after the shower, help with his underwear and pants, lift his arm like a dead-weight...this man who got on a two wheeler at three years old, who you couldn't MAKE fall, now falls at least once every day.

I have three magical humans that grew from my body, three small people that fill me with more love than I thought possible, all a gift from the man of my dreams.  Who is dying now.  I thought I should write "probably dying" but he doesn't read this blog, so I guess I can be honest here.  Sooner or later, this will kill him.  And I will have to find a way to raise our kids alone.  I will have to find a way to enter the dating world again, something I was NEVER good at.  My friend, whose a**hole husband left her and her amazing two boys, left her an in, at least.  He left her accidental access to the husband of the woman he left her for...and that, oddly enough, worked.  I heard about how Maids of Honor and Best Men at weddings were basically marriage insurance back in the day...and to be honest, I was, at one point, attracted to his best man, I think that was the messed up, never work out, sort of attracted..and I couldn't go there regardless...

I want to hide my head in the sand, plug my ears and pretend I can't hear anything, squeeze my eyes shut...but I can't.  Someone has to be there for my babies.  And show them we can still smile in the midst of all this.

I want to drape myself in Universalist Unitarian jewelry and decorations... because the people we have met there are helping us and holding us up at every turn.  They are the family of my dreams.  One door closes and another opens.  I am grateful, scared, sad, and angry beyond belief. Except, I finally the inherent goodness of people.  Not that we are all good, but there are so many more good people out there than I ever realized.  Look for the heroes, big and small... they are out there.  And they are overwhelming.  Amazing. We have the potential...let's keep helping each other realize it...