Es ist ein sonniger Donnerstag in diesem kleinen Dorf.
Mein Gehirn denkt manchmal auf Deutsch und manchmal auf Englisch. Jeden Tag verstehe ich ein bisschen mehr. Unser Sohn spricht so viel Deutsch und ohne einen Akzent, es ist unglaublich.

I dreamt of you last night – or I dreamt of mourning you or of both, I’m not sure.

Magnus talks about you, that he misses you, that it sucks that you died and I agree.

Even though he has no real memories of you, even tho I’m the only active person in his life that knew you, that even in this entirely new life across the world from where you lived and died, you are still a part of his life in his thoughts.

C and I were talking today about the rest of our lives here, now that things are becoming more concrete, and when Magnus is older I want to take him on a trip to a place that meant a lot to you, or a place you wanted to go but never did, like Avery Island. I don’t know yet where, I have some time to figure out it.

You can navigate this.  This is within your abilities.  The deciding factor in this is not something intangible like luck or a bodies response to treatment.
You are the deciding factor.  You get to decide and figure out how to breathe, how to live in the fucking amazing moments of your life.  In the midst of this demanding, overwhelming semester you are there underneath.  And you’ve done this before, the anxiety has debilitated your actions and thoughts and you fucking figured it out, you reached out for help and you reached deep inside and you made your way through.
So stop and breathe and engage in the moments of this life, this life that you chose.

I’m stuck.  Food isn’t appealing, the daily tasks of life seem irrelevant and hard and I’m still looking for you, it’s been over two and a half years and I’m still looking for you, will I ever stop looking?

Today I don’t feel lucky or capable or determined.  Today I want to cover my body in layers of your clothes, crawl into the bed that I could swear you slept in with me, and wail into the pillow that I can hardly remember your head ever resting upon.

Today I’m a fucking failure and it’s too hard and I want to fucking quit.  I never do, I never will, but today I wish I could.

I’m tired of only surviving this life, I’m tired of having to make do with it being good enough.

I walked around campus in the moonlight after finishing my Chem test.  Headed towards the pond in an attempt to find space without the noises of people but there was no escape.  I could feel myself relaxing a little bit in the dark and the noises of night.  I remembered living on King’s Row in 6th grade and crawling out my window after midnight to walk around the empty streets, crouching and hiding whenever cars approached.  I think I felt safer in the streets than I did at home.
I thought about a different life, the possibility of finding happiness in a different context, not in school, not everything being so fucking hard.  I thought about the story of a different life in some small New Mexican town that I told Chris like a fairytale, like a promised dream while the immature lymphocytes slowly killed him.

I’ve been trying to care about doing this homework for circuits for the last 4 hours, last 4 days?  I don’t know.  I’m trying to care about shoveling, about showering, about doing dishes, about getting dressed.

I want to hide under the covers and sleep and cry for days.  I can’t find the focus or motivation, so I waste hours of time doing nothing, playing a mindless game on my tablet, looking at nothing on the internet.

I have a clutching in my heart that won’t leave, that is sucking me dry.  I need a schedule, I need outside tasks to pull me out of this grief.  I don’t want to be at home.

Grief has slipped under the covers, tangled itself in my hair, held my hand as it guides me so quickly, so effortlessly into this mire that feels impossible to pull myself out of.  How quickly it can turn from thriving to surviving, and back again, and then again and again over and over.  How I had forgotten what the unbearable weight of it feels like.

I can’t find motivation or comfort in the homework, in the studying, in the tasks to complete to yield the focus to my life.  I care in the abstract, I care about the idea of doing well on my test this week, about understanding and completing the homework due tomorrow, about doing well upon this course of my life, about providing emotional and financially for my son.
But today and yesterday and the day before that and and and I can’t feel anything but this unrelenting emptiness, this ache for his arms.
I want to cry in class, while trying to take notes, trying to engage my brain.  I miss being touched, being held, being loved, I miss the home that he was for me, when I let him be.

I know that it will pass, as it has before.  But right now that’s little comfort for the feeling that I have.  The unpredictable waves of grief knock me down.
Grief, like fucking cancer, doesn’t give a shit about my tests and homework and laundry and the list doesn’t end.
It’s 12:28 and I have no idea what I’ve done with this day, I’m so fucking tired.  I thought writing this out would help, but I’m more tired now.

I’m looking for you again, looking anywhere and everywhere for some scrap I haven’t seen before.  Or I’m looking at any white noise I can find, any nonsense to disconnect myself from everything because it hurts, again, it hurts.
It’ll pass but I’m in the thick of it, I’m here in the fog, sometimes clawing my way out to catch glimpses of me in this life.  But mostly this past week or more or so, or I don’t know how long, I’m going thru the motions again, dragging this body thru the paces of a day, dragging it around and finding little comfort, not giving myself comfort and rest, forgetting how, to just let this out of me somehow, fuck I want it out it hurts and I stay up too late and I procrastinate EVERYTHING until it’s last minute rushing and fatigue.  Fuck that early fatigue has crept back in.  I’m so fucking tired Chris, I’m so tired and I can’t find you.

I want to remember when he tells me he’s going to be a “whole hand” when he tells me his dreams of playing with pig pants or his friend in the Meadowlarks, Riley.  Or when he tells me he wants to study tigers/drive monster trucks/parachute from the sky or when he wakes up and tells me with a sleepy voice and eyes “I love you.”
That he wants to learn everything about the whole world. I want to remember the fleeting feeling of his curiosity expressed, his joy and love during the rush of our lives.  I want to bottle it up so I can open it and breathe it in 30 years from now when he is a grown man but still my baby, always my baby.

We got home a bit ago from Magnus’ birthday party.  He had many friends, both from school and elsewhere at his party.  He had such a great time, and so did the other kids.

On our drive home I just felt struck with how loved I feel, and have felt, from our new and old friends/family.  I feel lucky to be alive, lucky to be loved, and lucky to love those around me.

After thinking more about it, I think I realized a few things re: Magnus’ relationship with his grandparents.  Maybe in some way I was thinking that if they showed more interest in him, if they reached out, it would somehow change or makeup for them not being there for Chris.
But they aren’t there for Magnus, and they weren’t there for Chris.  And I can’t change either of those things.  They can’t make up for how they treated Chris, and I have no control over whether or not they choose to play a part in Magnus life.
I’m still really fucking angry at them.

Twice in the past day I’ve had moments of missing him sneak attack the cuss outta me.

Yesterday on our drive back from the grocery store Magnus commented on a shed that’s on the back of a truck on the road we were on: “that’s going to be there forever, it’s never going to move” (we’ve seen it sitting there the last week or so).
I laugh and say “so it’s still going to be there when you’re an old man?”  He said he was never going to get old and before I can think of what the words mean I tell him that of course he is, we all get old.  He asks me if his daddy was old.  I answer that no, his daddy wasn’t old and start choking on my heart.  I tell him that his daddy was young when he died, and he asks if I’m crying and I tell him yes, I am.  I’m crying because I’m sad that I won’t grow old with your daddy, that I’m sad I won’t get to see him as an old man with wrinkles and a head full of grey hair.  It’s strange to think that some day Magnus will be older than his father ever got to be.

Today I was looking at info for the town of Weston, MO.  It’s a small town about an hour from here, they have a famous old Irish pub that I went to about 10 years ago.  I have a few friends at the Irish fest there this weekend.  I was looking at the food the pub serves, the bed and breakfasts there and I start crying because my heart and my mind immediately thought of Chris and I there; the food, the beer, the small town – he would have cussing loved it all.

It’s a beautiful rainy fall day outside, Magnus is napping.  I’m going to wander around my house for a bit, drink some cider, and compartmentalize so that I can get some damn homework done.  I have so much due this next week and I’ve been procrastinating far too much.

Having spent most of the last week at home with a sick Magnus has been twilight-zonish.  When we went back to the doctor on Thursday there was a man with a mask on in the waiting room, it made me think of Chris.  Later when Magnus used the lobby bathroom the smell in it confused me and then I realized it was the distinct odor of urine from someone getting chemo treatments.

Tomorrow we’re getting family photos taken on campus and at the pumpkin patch so we can mail them to loved ones for the holiday.  This was the last family photo taken of us:

It was Thanksgiving day of 2010, 4 months after he was diagnosed, 4 months before he died.
We’ll have the two daddy dolls and daddy bear in the photos with us tomorrow.

Chris,

Magnus graduated from his Cottontails classroom today.  He’s so outgoing and has lots of friends, you would be proud.  It didn’t cross my mind at the time, in his room surrounded by his classmates and their parents.  But at home now as the sun goes down and I drink a glass of wine, I cry thinking of how you should of been there, you are supposed to be there to see your son instead of inside an urn on top of my dresser.  He misses you.  He tells me that he’s sad and he misses you.  He sleeps with his two daddy dolls and his daddy bear and tonight with the green bear that used to be yours.
I still can’t listen to most music without crying, it all reminds me of you and I break down fast.  I don’t want to finish unpacking, I don’t want to sort thru the only physical things I have left of you.  Your cologne, all of that cologne you had for over a decade.  What I want to do sometimes is spray it on your shirts and put them in zip lock bags and try to re-create and preserve your scent.  I saw a flyer for a local cooking competition and one of the entry categories was salsa.  You would have loved to do that. You would love living here.  I can’t write anymore.  There’s too much and not enough all at once.  I love you.

In January, in that hell at MDA when he didn’t know where he was most of the time, had that wild look in his eyes.  I would sit next to him while he drooled uncontrollably because his mouth was half numb from the cancer spreading to his spine and brain, and I would rub his back and tell him I loved him, tell him how good he was doing, how proud I was of him.  It calmed and soothed me too.

I would tell him a story, a story of us in the future.  A future without cancer and hospitals.  We would move to some small town in New Mexico and open a diner.  I would gaze at the stars at night and help run the diner by day.  We would live quietly, happily in the New Mexico desert and raise our son.  Our bellies full of the delicious food Chris would make and our hearts full of love.  I can see him in the diner, cooking food and exchanging smart ass remarks with customers, with a big grin on his face.  I can see us holding hands in the crisp night air, watching our son playing underneath the blanket of stars above our head.
Chris always wanted to move to the desert, always wanted to own a restaurant of some kind.

I haven’t let go of this dead future.  I can’t quite open my hand and let it slip away.  And so for now, I’m only half here in this house, in this body, in this town.  I’m dragging this shell around again these past few weeks, the inside is all scooped out and scraped clean.  I thought I had put it all back inside, I thought I had made a whole new set of guts but I can’t find them anywhere.

I’ve been feeling out of sorts for a week or so, two?  I’m not sure.  When did it start?  Maybe when I found the cards Chris kept, cards I’d written to him over the years.  I feel dugout and exhausted, so exhausted.  I feel like a fucking failure and I don’t know why.  Simple things are hard.  I haven’t unpacked my printer and I’ve been meaning to for the over 3 weeks we’ve been here.  I know where it is, it’s easily done.  I need to print out more sticker charts for Magnus, he hasn’t had one since we moved.  I should have kept that continuous, and I didn’t, why?  Why haven’t I printed off the application for academic forgiveness and dropped it off since I was finally able to last week?  Why am I letting it all pile up and slowly pull me down when it’s just simple shit.
I don’t know what I feel because I’m trying not to feel and it’s not working.  Is it always going to be this hard?  I’ve been asking that for over a year, since before he died.
I tried to write over this void, tried to will it away with words hoping it would magically fill up but it’s there.  Tomorrow all I want to do is take Magnus to school and then watch movies and lay around until it’s time to pick him up.  Motivation is a word and not a feeling.  I need to get groceries and do laundry and all the shit that’s always there to do.  And the unpacking, of course.  I don’t care, I don’t have the energy.
I haven’t fallen asleep easily in weeks.  Having to cajole myself, push myself, into doing simple things that shouldn’t drain me – that’s the part that I wonder if it will get easier.  The downward wave or whatever times like this it’s hard to remember when I didn’t feel like this.  It’s hard to remember how the fuck I’ve done this at all in the past 15 months since he died.
Raising our son alone is hard, so hard.

I can’t get my brain to let me sleep the past week or so.  I’ve been writing entries for here in my head for days? weeks?

I took off my wedding ring a few days ago.

Unpacking things that were last used when there were three of us is, is hard describe.  It peels back the layers that have formed over my heart and leaves me exhausted and restless.  I don’t miss him any less.  There is so much stuff, so many objects that I don’t have a need for, but am at a loss of mental and physical strength to sort thru.  I haven’t let myself make this my home yet, I’m weary of the things I haven’t unpacked, the remnants of a dead life.  Unpacking cd’s and dvd’s he bought before “us” – I don’t know what to do with that stuff.
I came across cards I had written him over the years that he had saved and I was done for the day.  Actually I have barely unpacked since coming across those cards, on Wednesday I think.  My mind has been a restless animal since then.  Pacing, breathing, stretching my long warm agitated neck, straining for something that will never be sighted again.
I don’t know how to get it out, how to push these little buttons with the letters on them into words, phrases, sentences that can possibly explain the lengthening turmoil.

I wrote this in 2007.

On the prairie
in the fields of wheat 
and in the pastures of cows 
my heart will roam.

The little girl will walk back to me
I will hold her hand
I will dry her tears
I will put her to bed so that I
shall rise to the sound of mourning doves
rise to the sound of my life sprung from
their lives in the Kansas prairie in the 
haunting wind in the sweat and the toil in the
blood and the earth.

I have less on my plate since school ended and yet I’m more anxious than I have been in awhile.  Packing, packing.  I delay it, I berate myself for delaying it, I berate myself for berating myself.  I try to figure out how to be kind to myself, try to figure out why I’m making something pretty simple into something anxious.
The last time I packed up a household was in Wichita, late October of 2010.  With my husband, with Chris.  It’s all the same stuff I’m packing up again, all of our stuff but it’s not us anymore.  I didn’t realize it would still be this hard, I don’t want it to still be this hard.  But it is.  I don’t miss him any less, it doesn’t hurt any less.  Most of the time I’m just more distant from it, like when I’m busy with school and classes.  Now it’s just me in this duplex full of the objects of our past, that I must pack up again in an effort to create a future without him.  It’s another change in life without him, another event that would we would have shared together.

I can reach out of this fog.

I can take care of the cleaning and cooking and chores and errands and school.

I can do this.

I can stop wasting time and stop turning my brain off and disengaging.

I can do it, I can keep moving forward and not fall down the rabbit hole.

I can do this, and I deserve this.  I can raise my son and go to school and have a household and make our own traditions and a life filled with joy and love and not chaos and instability.  I can make this life for myself, and I am worthy of this life.

I do not have to be defined by what my life didn’t and doesn’t have.  I don’t have to be defined as a person with terrible childhood and a dead husband, struggling to keep my footing everyday and figuring out how to create so many things that were never taught to me.

I am a mother, a student, a knitter, an observer and lover of this wondrous universe.  I am determined to give my son the best life possible.  I can make this happen, I can put one foot in front of the other everyday and do this.  Sometimes I’ll stomp and sometimes I’ll skip but I can do this, and I will do this.

seeing the young love start to branch out, the looks, the first electric holding of hands
seeing it as I walk across campus makes me want to cry out, tear at my hair and screech like a dying animal, tear at the ground as if I had hooves, foam at the mouth as if this grief inside is a rabies that can’t be contained
but i swallow hard, the knot in my throat, the hole in my heart feels like bile, and it leaks out in small tears, and I gasp and hope I don’t sob and with the sleeve of my jacket I blot the tears and walk to the truck and drive to pick up my son and go thru the motions of life
somedays I want to hold onto this ring as if it’s Chris himself, as if as long as I keep it then he’s not all the way dead and maybe if I eat it, if i scratch and gnash it with my teeth and swallow it whole i can make it stay inside me, forever ever ever
then it’s a weight that pulls me under and I want to throw it into the universe, as far from me as possible, as if its release would free me from your death, from the blackness, the darkness, the endless nothing

(it was here, and there was more waiting to get poured out but the boy needs his socks put on, his bedtime story read, and the test needs studying for, the life keeps demanding to be lead)

today little pieces of me are falling off all over the place
my mouth lurches to the side, muffling a cry out when i want
his arms here, around me
i want him here with the same raw and biting desire, as if no time
has passed at all, as if all the time is passing and
there is nothing left

oh emily the candle, the candle it’s burning and i’m afraid

Dear Chris,

It’s been an awful week.  The numbness and the fog and the restlessness are overwhelming.  I look at my phone constantly, somehow thinking you’ll call.
You won’t call, you will never call.  You’ve been dead one year and 7 days.

Alternative time units

373 days can be converted to one of these units:

• 32,227,200 seconds
• 537,120 minutes
• 8952 hours
• 53 weeks (rounded down)

The fog has rolled in again this week.  I’m fighting thru it to try and focus on physics, calculus, digital logic design.  So far not very much luck.  Oh and the 2 scholarship apps I need to complete, the lab report.
Monday I have 2 homework assignments due, Tuesday a lab report due, Wednesday 2 more homework assignments due and a physics test, thursday another homework assignment due.
And so far I just really don’t fucking care, it’s too thick inside my head and I’m too quickly unraveled and trying to figure out who the fuck I am, again.
I’m a widow?  My husband has been dead a year and 4 days?  Those last two sentences really describe me?  Really?  Fuck.
I keep writing lists about my schoolwork in hopes it will spur me into action.  But all I want to do is crawl back into bed and stare and cry and then get up and wander aimlessly around this duplex, around my brain.  The days have blurred together, food has no taste, sleep gives me no rest.
I’m hoping that class on Monday, that getting back into the routine, will push out the fog.

I want him back I want him back I want him back I want him back I want him back I want him back I want him back I want him back.

please

I’m quite manic this week, it’s been a much rougher ride than I thought it would be.  The words are few and the emotions, the emotions just keep coming and coming and coming and I’m exhausted and time, where has the time gone.  It’s been 3 days since the memorial?  What have I done in the last 3 days?  I don’t know. My house is still messy, I haven’t done any school work.  Fuck I don’t even care about school work, I just want this semester over with.

The anger returns.  I’m less torn up about the anger, more resolved and perhaps even comforted by it.

Fuck you, fuck you forever and always for not being there for him when he needed you the most, for not being there when you fucking should have BECAUSE HE WAS YOUR FUCKING SON AND YOU ADOPTED HIM, YOU CHOSE HIM, HE WAS YOUR FUCKING BROTHER THAT WAS THERE FOR YOU, YOU AWFUL EXCUSE FOR A FUCKING PERSON.

Dennis cried at the service and said something about how he was short-changed.  FUCK YOU.  You know who was shortchanged?  YOUR FUCKING SON, THE ONE YOU IGNORED FOR MONTHS BEFORE HE DIED, THE ONE WHO YOU ACTED LIKE WAS DEAD LONG BEFORE HE WAS.  FUCK YOU FUCK YOU FUCK YOU.  It’s a good thing you gave away those tools to your now ex-son in law, the tools that were meant to go to Chris, the tools he told you meant so much to him, that he wanted to pass down to his son.  And you gave them away, you gave them away as soon as he died.

I DON’T EVER WANT TO HEAR THE WORD BRENDA  AGAIN.  SHE’S DEAD TO ME.  AND I SURE AS FUCK DON’T WANT TO HEAR ABOUT THE TATTOO SHE GOT FOR CHRIS, THE BROTHER SHE NEVER FUCKING ONCE SAW IN THE 9 MONTHS BEFORE HE DIED.  BUT YOU SURE AS FUCK MADE SURE TO TAKE CARE OF HER DAUGHTER SO SHE COULD GO ON 2 FUCKING VACATIONS DURING THAT TIME.

I’ll probably have your clothes longer than we got to spend together, maybe longer even than you got to live.
Seeing men in their mid-30’s and older in public still transfixes me.  Eating lunch in Wheatfields I watched the couples, the men.  The man with his back to me filling up his cup with ice.  Noticing the gray in his hair scooped me out, broke me down.  I will never get to see you age into an older man, never get to see your head full of silver hairs, get to tell you how fucking handsome you are with it.
I remember you always noticing when you would get gray hairs, amazed at how fast they crept into your near black hair.  The memories of my fingers in your hair, the softness, my hands on the back of your neck as we embraced.  I miss the weight of your body, the weight of your life in my life, the sound of you, your laugh and those bear hugs, Magnus remembers those hugs you would give him, the tight strong embraces.
I hold you in my heart.

Today I turned 33, my first birthday since Chris’ death.  My 32nd birthday he was in-patient at MDA in Houston.
I’m in the Impromptu Cafe in the Kansas Union on campus.  I just ate one of today’s specials, the Guinness pork chop.  After I finished my calculus test at 11 I decided to walk over here and treat myself (read that as”treat yo self” in the voice of Tom Haverford from Parks&Rec).
They are playing an album of k.d. Lang’s and I mentioned to the waitress that it was my birthday so I thought I’d indulge myself.  As k.d. belted out her cover of Roy Orbison’s “Crying” two of the wait staff brought over a dish of chocolate mousse topped with whipped cream and a single lit candle.  It was so damn touching it made me cry.

It’s harder than I thought, juggling the intangibles of grief and a child trying to understand what it means that his dad is dead, the fear of dying himself someday, and the fear of me dying.
The academics aren’t too challenging, but it’s figuring out how to focus on the task at hand while fighting thru the sadness, the fog, the exhaustion of it all.  I usually want to cry before we even leave the house at 6:45 in the morning.
On the drive this morning he told me he doesn’t want to die, he just wants to be with me forever.
I’m angry and sad and I don’t know what to do with any of it.  I want to box it up and put it on a shelf because there’s not time.  I need to study my physics and calculus and digital design and do our taxes and look for a place to rent this summer, and get new tires on the truck, and get ready for the career fair, and go to SWE meetings and do my fucking living will because it’s outdated and FUCK FUCK FUCK.
The tension in my hands, in my mind, in my body is building building building.  I need to get an appointment at CAPS, I need to find the damn time if I’m going to get thru this without falling apart.  I can do this, I know I can, I want to do this, it will make our lives better.
Class starts in 2 minutes and I need to plaster on a mask when I’d rather just cry.  On the bus yesterday I smelled someone’s cologne and it made me want to sob violently, that smell of a man, for me that smell I will never smell again.

While talking about some of my friends and their kids Magnus said “I know their dad, they have a dad, why don’t I have a dad?”
He knows his dad is dead, but this is the first time he’s verbalized the understanding that all of his friends have dads, but he doesn’t.
Fucking rat shit piss fuck motherfucking fuck fuck fuuuuuuuuck.  Those are the best words I have.
I’m tired but there is no time for a nap or crying – I have so much to do.  Tuck the grief away for another moment, whenever that is.  Being busy is good, being busy is hard, it’s all hard.

He’s acting out a lot lately with me, since school started for me, makes it harder, makes me tired before we even leave the house at 6:45.  I can tuck my grief away and unfold it later in bed or in the shower or while driving but Magnus’ grief is a thing without edges, without words or understanding.
He can’t really verbalize or process the emotions and most of the time he doesn’t seem to focus on it and I can forget, I can forget that he is a little boy of 4 just trying to make sense of the world around him and his place in it and that his dad is not in his world, his dad is ashes and he can’t play with his dad or hug his dad or tell his dad he loves him or hear his dad tell him that he loves his son so much, so damn much.  

Waiting in the hallway this morning with 20 or so other students I looked at them, so young.  Probably none of them married, and I’m not either anymore, technically.  Technically my marriage ended with Chris’ last breath, from wife to widow in an ambulance on a Texas highway in March.
I looked at them and thought “I’m going to get a better grade than almost all of you in this class”.  And I am.  Digital design will be my easiest class by far.
It was lonely and impossible to not remember when I was a student before, when Chris was alive, when Chris would text me or I would call him when I was on campus.  When he was my heart and my home that I left every morning and came back to every night.
Magnus has been asking for more hugs and sleeping in my bed again.  It was comforting for him when he was sick and I think comforting for me when I’ve been sick.  My home is always empty when I open the door.
Today went better than I felt it would, feeling sick and exhausted.  Walking into the engineering library it was grey and so cold and brief flakes of snow swirled in the air and it made me smile, smile spontaneously, freely, and genuinely.

The conversation on the drive home:
Magnus: Mom what did you do at school today?
Me: Well I learned about digital design and converting decimal numbers to binary numbers and binary number to decimals numbers.
Magnus:  That is so awesome mom!
Me: Yes it is!  And I also did some calculus about parabolas and ellipticals.
Magnus:  Wow!  Can I do that too?
Me:  Yes you can, when you are older!

I fucking love him.

I’m angry that I’m alive and that I have to think about things like the temperature the thermostat is set to so that my alive body feels warm enough and angry that I have to eat and angry that I have to sleep and angry that I have to drive and fucking FUCKING angry that he’s not anymore and angry that I’m angry at something so fucking pointless and beyond my control and angry that my home feels like it died with him and angry that I have to carry on because I care, I care that my son has a happy healthy life and angry that I can’t just drink myself until I’m unaware of fucking anything at all or just walk out the door and leave it wide open and walk and walk and walk until there’s nothing, nothing at all, because no matter how good or shitty i feel every fucking day for the rest of my fucking life it won’t ever, EVER change the fact that he is dead and that it will always ALWAYS ALWAYS ALWAYS hurt, it will never not fucking hurt because I loved him and I still love him with a reckless abandon I’ve never known before and will never know again

Perhaps a trigger for this undoing today is also the event of taking Chris’ death certificate to our bank yesterday before picking up Magnus so I could take his name off the account.  At the desk next to me was a mid to late 20’s couple setting up an account and their bank rep was asking them things about if they had a living will and how neither of them did and how thinking about that stuff is scary and people put it off and who they would designate to get the $ in their account if they died.  What fucking strange bookends.

Today, this morning, I’m unraveling like I don’t think I have before and I’m so glad Magnus is at school.  I’ve thought about how manic these posts will look to me later, these three separate entries of losing my shit.

Today I wish I was a robot with an off switch until it’s time to pick up Magnus or I could lose my mind and break everything in my house, in this house that doesn’t really feel like my home because Chris was my home, but then it would magically put itself back together when I fall into an exhausted nap before waking to pick up my son (our son?  my son?  I don’t know)

realized on the drive home last night from our holiday support group meeting at solace house that the only christmas we (chris, magnus, and i) spent together was 2 years ago

Magnus’ first christmas he was in texas with Chris while I worked at the post office and saw my grandpa for the first time in many years (7?  I don’t know).  Grandpa died < 4 months later on April 18th 2009.

Magnus’ 2nd Christmas was at our house on Mona Lane, tamales made xmas eve, pj’s opened to wear that night, presents opened the next morning, he ate snow for the first time that day

Magnus’ 3rd xmas in georgetown, what an awful fucking holiday, i don’t think for him tho

and now, this christmas, with his daddy dead

it’s 9 a.m. and I’m drinking one beer, quickly, one boulevard nutcracker ale, it should be a fucking holiday cheer

745 dropped off magnus, dropped off trampoline @ Jessica’s, then to Walgreens for wrapping paper but it’s all too expensive so I just buy a toy for the toys for tots donation box.

I’m listening to WHY? in the truck and it’s slowly unraveling me but I don’t know it yet

I’m distracted in line at walgreens and when I’m across the street at the $1 store I remember the chapstick i meant to buy but unintentionally shoplifted instead, i laugh at myself

purchase purchase wrapping paper and the anger is building

return to walgreens and pay for previously shoplifted chapstick, decide I can’t deal with simply buying milk across the street at checkers, i’ve been meaning to make a real grocery list for weeks now

drive home, impatient, speeding a bit, and the anger makes me scream until i feel pain and it’s not enough, i’d like to break something with my hands until they bleed, until they break, i need something outside to match my insides, i need some fucking physical pain to try to balance this fucking inside horror rage devastation

at home, more WHY? playing loudly and drinking my one beer and trying to give a fucking shit about showering or wrapping presents or making a grocery list or doing anything else besides losing my fucking mind until it’s time to get Magnus

Today is a gaping wound that I can’t close, don’t know how to close.
Today I just keep searching hopelessly for him.
Today everything makes me weep.
Today it feels like I didn’t do enough.
Today I fell into the rabbit hole and please please PLEASE let me get out tomorrow.

WHERE THE FUCK ARE YOU, I NEED YOU HERE CHRIS.

Body, a sheet of newsprint on the fire
Levitating a numb minute in the updraft
Over the scalding, red topography
That will put her heart out like an only eye.


I’ve felt like that piece of newsprint these past few days, stuck in that suspension above the hot biting grief. 
His memorial is set for the one year anniversary of his death.  It’s hard to put out there, to expose the grief and ask for others to come where I am and celebrate his life.  It’s hard to be vulnerable, I want to run the track of my old habits, my brain wants to find refuge in the shortcomings (real or not) of others.  I push the track away, I try to find another, I try to find the energy again, I try, I’m here, I’m here.  He’s not.  He’s gone, for now and ever.  What lives on is the love inside me, that will always be inside me for him. 
He could be such an ass and he could make me laugh like no one else.  We were supposed to keep growing together, now I have to do it alone.  
It’s been a bit over 8 months since he died in that ambulance on that highway in Texas, covered in the blanket that covers me now in my sleep, with his urn of ashes next to me on the nightstand.  I don’t think it’s gotten easier, mostly just different.  
I can’t sleep the last few nights, I’m back to searching the tv, the ipod, the computer for fucking something.  I won’t find it.  
I was going to knit dishcloths for gifts this year, like I did last year.  But my fingers don’t want to, they don’t want to reproduce the knitting frenzy of last year, the packages sent in the mail.  I don’t have the energy/interest in even explaining that I’m not sending anything out, that I don’t expect anything.    
We (Magnus and I, instead of you and I) put the tree up the other night, finished decorating it last night.  The cranes we folded, some of the decorations of Chris’ childhood, his boyish face surrounded by a paper bell.  
It breaks me into pieces, it scoops me out.
I look at the pictures of Christmas from 2 years ago.  Last Christmas was so horrible, I re-read my entry on here about it the other day and it was awful, just awful.
I’m ready for a blanket of snow.

8 months yesterday.  In 4 months you will have been dead a year.

Today I have little energy or patience for the mundane tasks of living.  The preparing of food, the cleaning of a house, the continual and unrelenting negotiations with a nearly 4 year old.  In 2 months he’ll be 4.

It could be the wind, it could be the time of year, it could be that I’m typing on your laptop since mine is broken, it could be the sudden stress of maybe not having the money for school next semester, it could be it all or simply that you are still dead, and it’s so fucking hard and I miss you so fucking much.

there’s a jar of dip in the pantry that Chris and I bought at an HEB together, i feel I’ll keep it unopened forever

the hormones of my menses have left me feeling unraveled the last few days

I’m crying openly today and Magnus tells me it’s not ok to cry and that I don’t miss daddy, basically the opposite of what I tell him.  I dry my tears, blow my nose, and tell him that it is ok to cry and that I do miss daddy.  He tells me he doesn’t miss him, and that sometimes he does miss him and sometimes he doesn’t.  I say that’s ok and that it’s also ok that I cry when I miss daddy.  He asks me what would happen if I got sick and if I would die like daddy and I tell him that I don’t have leukemia and I’m not going to get sick from it and die like daddy did.

I want to crawl inside my grief today, crawl into bed and wail and wail and wail and sleep.  I’ve suddenly lost my focus on the day and I don’t care about emptying the dishwasher, about picking up the clutter, about about about I don’t know, my mind is trailing off.

I checked out Joyce Carol Oates’ book “A Widow’s Story” and skimmed it last night.  I think it’s also left me feeling a bit undone, her words that cut so cleanly thru the layers and leave me exposed and lost, so lost.  It’s a large book, and it was a long marriage, over 40 years; I don’t know if I can read it quite yet.

The streets I drove around the medical complex in Houston for those last awful months stick in my mind.  I’m knitting and watching tv, and images of the streets & businesses I drove by appear vividly in my head.

Dennis and Mary arrived yesterday for a weeklong visit; it’s going pretty well; Magnus is happy to see them.  I’m torn, I struggle.  I’m glad they came to visit us, they are spending time and money to be here.  Mary is talking about flying out in January for Magnus’ birthday.  I try to not let the memories of how horribly they coped when their son was dying, when he needed them, and they weren’t there.

In an email before their trip Mary asked if there was anything they could bring me from Texas.  The first thought that popped in my head was “bring me Chris, bring me my husband”.  He died in Texas, Texas was the last time he was with me.  This urn on my bedside doesn’t hold him, it’s just the ashes of his body.

Magnus tells me he misses his daddy, asks where is he now, what would it be like if he was here, that he wishes he could come back alive.

Last Christmas, and Chris’ last, I bought us matching shirts from Target that are from the Christmas Story movie, Chris’ favorite.  I put it on the other day and Magnus asked me about it, and I cried realizing that Magnus doesn’t get to share the movie with his father.  Chris doesn’t get to watch the movie with his son this Christmas, when he’s old enough to see it.

The living bodies of men his age, or older, still confuse and transfix me.  When I’m around fathers & their children at playgrounds I feel the urge to tell them, tell them what I don’t know.  Tell them to cherish the simple beauty of being a father alive with his children?  How completely creepy that would be.  I try not to stare, I try not to cry.

laying in bed with magnus at bed time with his new doll of daddy and he’s talking to daddy a stream of stories about his new life and things he remembers about daddy and in the middle is “and remember daddy you died?”

Magnus has been sick since Sunday.  The days are a blur.  His voice is coming back, his cough seems to be getting worse.  Little sleep last night – his cough & it’s pain awoke him frequently.
Nothing I can do can make him feel better and that makes me want to lose my fucking mind.  Too many memories of being able to do nothing to soothe Chris’ pain.
He’ll feel better, he’ll start school.  This temporary exile will subside.  But for now I feel like losing it.  I feel so fucking helpless and scared shitless.
I tried to imagine myself a year from now, what my life would be and I had no interest.
I need Magnus to feel better, I need to get the fuck out of this fucking duplex.  Tomorrow, tomorrow if he’s better we’ll go somewhere and do something, anything.  If he’s not I guess I’ll call the doctor.
He’s been sick 4 times since we moved here – how the fuck am I going to survive in school?  Next semester will be his birthday, my birthday, Chris’ birthday, then the one year anniversary of his death.  And when he gets sick and I miss class how do I catch up?  It all seems so fucking impossible.  I just want to turn my brain off, I want to run away, so fucking far away.
No matter where I look and no matter what I do I can’t find him, he’s gone.  He’s fucking gone and it’s just me left, the only parent left.

You were my best friend, my partner.  I miss having you to talk to about any and everything; Magnus, the neighbors,the lawn, dinner, music, news, movies.
I miss sharing my life with you.  I miss our life.
Sometimes I walk around this duplex and it doesn’t feel like it’s mine, that this is my home and I live here.  It’s so lonely without you.  I never could have imagined I would be raising our son without his father.

Today Magnus’ cranky tantrums wore me down and I think made me want to have one too.  I didn’t sleep well last night.  It’s been a hard week.
I just replied to an email Chris’ birth mother wrote me and I feel a bit better.  Time to attempt sleep.

I noticed quite awhile ago that the first thing my brain does when I look at a photo is categorize it as “dead” or “alive.”  Meaning that the photo was taken when Chris was alive or dead.

fucking sucks.

The busy daytime moments are fine.  The nights are tucked in with tears and frustration and and and insert whatever here: ________.

Filled out daycare paperwork today.  All the blank spots for other parents info.  The question about the parents relationship status and there being no “widow” option.  So I wrote it in and circled it.  The “what else do we need to know about your child” section filled in with words of death and separation.  Doesn’t get easier.

The saying is that it will get easier.  That this first year of anniversaries and birthdays and holidays are going to be the worst but it will get better.  But it’s not years from now, it’s today.  And in 2 days it will be our wedding anniversary.  Knowing that years from now I probably won’t cry as much as I am this week doesn’t really help me feel better now, doesn’t make it hurt any less.

Somedays I wish I could temporarily abandon responsibility and drink and drink and be beholden to no one and nothing.  But I know that I wouldn’t feel any better, I’d probably feel worse.  But it would feel good for a little bit to unravel.  The scales tip more towards it being beneficial that my son prevents me from losing my fucking mind.
Somedays I really wish I could pile his grief and my grief into a sack and toss it over a bridge and walk without the weight for just a bit until going to the banks to gather it up and shoulder it anew.

At the support group last night the facilitators asked us what things we think about that our dead spouses are missing out on.  Everything, he is missing everything.  Our son was barely 3 when he died, he is missing everything.
Magnus planted a flower in a small pot for us to take home with the kids in his group.  On the drive home I asked him about it and he told me “I planted this for momma and daddy but daddy is dead so I can’t give it to him so it’s for momma and Magnus.”
There is a blog I read from time to time written by a woman who has a daughter Magnus’ age who has Acute Myeloid Leukemia.  She is doing well (after a transplant) and has a wonderful writing voice.  Anyway I looked at blogs she follows and picked one and it turned out to be the blog of a woman diagnosed with ALL back in 2007.  She had a stem cell transplant and is doing well.  She went straight to MDA for treatment and had a consultation about a transplant during her first round of chemo.  I had to stop reading it, my brain doing down a path of shoulda coulda woulda’s.
(what if Chris had gone straight to MDA?  He had 3 rounds of chemo in Wichita and they never checked to see if he was in remission, they never discussed transplant for him after learning he was adopted)
It’s totally unproductive, I KNOW.  He didn’t initially have leukemia, he had a lymphoma version of the ALL leukemia so checking for remission isn’t as cut and dry as bone marrow biopsy results.  But mostly it’s unproductive because he’s dead.  He’s dead and that isn’t going to change no matter how many blogs I do or don’t read or no matter how many times I do or don’t re-think choices we made.
When he was diagnosed I didn’t think “why him?”  But now that he’s dead I do think that, I think why didn’t he get to survive?  Why not him?  And there is no answer because that’s just the way things are.

Some words from the book “I hope you have a good life” by Campbell Armstrong:
“In grief we look for the spaces left by our losses to be filled; we seek out similarities, coincidences, omens, signs.  We want life to have meaningful alignments, because otherwise the death of our loved ones are random cruelties in a cruelly random universe.”

*Edit*
I read more of the ALL woman’s blog.  She had a transplant, went into remission, relapsed, and had another transplant.  Her and her husband’s lives where spent off & on between MDA in Houston and where their home was in Louisiana.  They sold their home, were a day away from closing on a new home when she relapsed and they had to move temporarily to Houston again, and had to go back to MDA countless times.  Most adults that achieve remission with ALL will never lead a “normal” life.  I don’t quite know how to express the feelings.  He was taken in 8.5 months.  If he had achieved remission we would of had to relocate to Houston.  I don’t know who would have cared for our son long term, his parents wouldn’t have been able to.  He was diagnosed and 10 days later he was in the hospital and our son was in Texas.  I wouldn’t be able to live with my son again until he died.  There were 3 of us, then two (Chris & I) and then two again (Magnus & I).  He’s been dead over 5 months but it’s been over a year since it was a family of three together.  After he died and I was back with Magnus it was horrible, feeling like I only got to be back with my son because my husband died.  I need to stop and get us out the door for a swimming lesson.  Chris is missing everything.

5 months today, I can’t find anymore words.

I avoid a lot of music to since Chris died, it’s too painful.  Tonight I played Jesu’s Ruined and it has left me feeling a bit undone.  

Magnus is sick with strep.  He awoke frequently last night crying out in pain – the meds not giving him much relief.  Today it has caught up with me, remembering Chris in so much pain and being able to do little about it.
I’ve looked thru his wallet a few times since he died, somehow expecting to find a note from him.  I remember once in the weeks before he died when he told me he loved me and kissed me on the lips.  His eyes weren’t focused and he seemed only half there.  Sometimes he would look right thru me with his eyes.    He changed so much at the end, the last months of hell at MDA.
I remember his eyes before, how they danced and laughed.  How much he loved to try to make me laugh, how much I loved it when I could make him laugh.  I remember the year I gave him his birthday presents weeks early because I couldn’t bear to wait and hold in the surprise any longer.  I remember how he would bug me when I would try to read before bed, and if I started to read my book aloud to him it would annoy him so much.  I remember how one of us would ask the other before cuddling “do you want to be the big spoon or the little spoon?”  Sometimes I can look at his chair sitting in front of the computer and almost see him sitting there, almost imagine myself putting my arms on his shoulders, kissing his cheek.
Magnus watched the original Star Wars at Logan’s house and now he loves to play it at home, he was playing with his little figures that Chris picked out for him last Christmas.  This morning he played with them and his little dolls that represent him and his daddy together.
I read in books that someday it will feel different, someday I will feel alive again.

After listening to some stories at the support group Tuesday evening I decided to put his ashes next to me on my bedside table.  They had been sitting in the closet wrapped in the blanket that I covered him with so many times during hospital visits and that covered him when he died.
I’m going to wait to spread them in Cimarron, New Mexico until Magnus is older and can understand what we are doing.  And even if he was older now, I’m not ready to do it yet.

Waiting in the Donut Whole parking lot for Soloman and his parents to meet us Magnus asks who is going to sit in the front seat of our truck.  I say nobody is sitting there, who does he want to sit there?  He says Daddy.  He says “remember when daddy was alive and he would sit in the front seat and you would drive?”  And I say yes, yes I do and I cry.

I was reading that book to Magnus for the first time and had to pause for a bit when Alexander is complaining about the kissing on tv and how he hates kissing.
It made me think about how Magnus doesn’t get to grow up seeing his mom and dad loving each other, showing affection.  He doesn’t get to learn about love thru seeing it first hand between his mom and his dad and this breaks my heart.

I can’t stop crying today.  Magnus asked me not to cry, I told him it’s ok if I cry, that it’s because I miss daddy and that makes me sad but that it’s ok.   And that it’s not his fault.
I was starting laundry and he got a stool and was helping load the washer and was saying that if he helps me maybe it will make me feel better and I won’t cry.  That made me want to cry more.  So I explained again that it’s not his fault that I’m crying and it’s ok if I cry.

I made him a tent in the living room – Chris loved making tents.  I remember in the house in Littleton he made a tent in the living room.  I remember we set up a camping tent in the living room in the house in Denver on 23rd St I think that was the name of the street.  Or we’d have “sleep-overs” and pull out the couch bed and sleep on it in front of the tv in the living room sometimes.

I miss that he’s not here to complain about how my hair gets everywhere, that he was always trying to make me laugh.  Most of all I miss sharing the joy of watching our son grow and change together.  Everything is so fucking bittersweet now.

It’s hard to believe that someday this pain will not cut me to the quick on a daily or hourly basis.  I’ll never stop missing him.  It’s so heartbreaking to wish so desperately for something I can never have – him alive.
Today I don’t want to be a mom – today I want to lay in bed and cry all day.  I wish it was cold outside so I could wrap myself in layers.

I want the weather to turn cold so I can wrap myself up in his clothes; wishing it could somehow spur feeling into my cells.  I want to spend days wrapped up in his heavy white robe.
How strange it is that I have every article of clothing, his shoes, his wedding ring, his sunglasses that he is wearing in a picture but I do not have him; the only thing I don’t have is him.
I can’t listen to most music anymore; it breaks me down into a crying mess in the blink of an eye.  I can’t stop looking for him.  I understand he is dead, I watched him die.  But my heart, my heart is lost and can’t stop yearning.  How can someone I loved with all that I have be gone?
He was diagnosed a year ago.  Just one year.
This duplex doesn’t feel like home; nothing feels like home.  Sometimes I see glimpses of it words that Magnus says, or his laugh.  But mostly it feels empty.
The auto-pilot I was on until getting here seems so long ago.  I don’t recall or understand how I was able to move us here.  I had plans to visit friends in different places but now the thought of leaving here is terrifying.  The thought of having the energy and money to travel, the ability to focus my brain to plan a trip seems completely out of my grasp.
Life feels completely out of my grasp because his life slipped away in that fucking ambulance on that fucking highway in Texas.
How am I supposed to live without him?

I can’t stop looking for you everywhere.

Last night I heard one of the guests at the party talk about his wife: “my wife says . . . . .”

I will never hear you say that again, something so simple.  Of course I’ll never hear you say anything again.  You are dead.  I am alive.  I don’t feel very alive.  I’m a stranger in my body, my clothes, my (our) bed, my house, my (your) truck, my head, my life; especially in a room or house or party full of couples.  I don’t know who I am anymore.  You are dead and everything seems absurd, empty, and so very full at the same time.
How can I believe in nothing and everything at the same time?  How can I be alive and feel so dead?  How the fuck can you be dead?
I feel like I’m losing my mind and I guess that’s normal, from what I’ve read.  Every single thing reminds me of you.  When we drive into Lawrence nearly every day we pass a John Deere store and Magnus says “When I be bigger maybe I can ride one of those with you, maybe.”  And every time he says that I think of you, and how much you would of loved to hear him say that.  But you will never hear him say that, and he will never get to see the smile it would have put on your face.  You will never get to see your son grow up and he will have no choice but the cruelty of a childhood without his father.  He asks me why you got leukemia and I tell him that I don’t know, that nobody knows, nobody knows.
I don’t know anything anymore except that you are dead, and most days I have trouble trying to possibly understand that simple horrifying fact of my life.

You are everywhere and nowhere.  All around this new house are pieces of you, objects filled with memories.  But I can’t find you anywhere, you’re gone; for now and forever.  I can’t escape your death.

It’s hard to feel anything; with the exception of love for Magnus.  Without him I wouldn’t care at all, about any of it.
I go thru the motions of life.  I don’t know what to do with myself some days, some hours, some moments. I get lost in the emptiness; other times I can set it aside.

I can’t decided what to watch on Netflix.  I start shows and stop them half way thru; I don’t care what happens.
I finished a library book today and I feel lost, what am I supposed to do now?  All the other books I have are about widowhood or grieving children; I’m tired of dealing with death.

It’s only been 3 months and 7 days since you died; never-ending and lost 3 months and 7 days.  The 18th of every month will signify a length of time since your death.  And the 18th of January was the birth of our son; he will turn 4 and you will have been dead for 10 months.

I should find a sitter for Magnus for a few hours a week and do something on my own.  But I don’t know what to do by myself.  All I can picture myself doing is driving down country roads, clutching the wheel and wailing as I wait to return home.
I need to propel myself forward, find a knitting class, find any class to get me out on my own.  I’d never thought that I could possibly be this scared of life.

I look at this photo of you from Christmas of 2009 and you are so handsome.  I look at this photo and your body and think how is it possible that your body is burned up into ashes sitting in an urn in a container in my closet, swaddled by the blanket that kept you warm until your dying breath?
I’ve started putting Tabasco on my eggs.  I had no idea I could ever feel this lost, this empty.

Today was harder than I thought it would be.
Maybe because I was up during the night with Magnus and his fever and it brought back painful memories of the many, many times I had to do that with Chris.
I feel like I’m out to sea today.
I miss him so fucking much.
I feel so alone.
I hung up his heavy white robe on the back of my bedroom door when we moved in.
I hug it and cry.

Today was a good day.

Picked sugar snap peas w/Jessica and sons , they are delicious.  Magnus helped with the picking but probably not so much with the eating.  Met up with J & sons early afternoon for swimming at the south park wading pool.  Magnus had so much fun.  We’ll be going there a lot this summer.  Plans to meet up with some other moms there tomorrow night.
Had a good dinner with Magnus at home, sitting at the table and not in front of the tv.  I relaxed a bit today; I’m starting to feel connected to life again.

Today was a good day.

Magnus is watching Ponyo for the 2nd time today.  Or rather he started it before falling asleep for his nap.  Today fucking sucks.  I’m emotionally exhausted and cry easily.  Unpacking the kitchen stuff is horrible.  Finding the photos and magnets that we had up on our fridge and putting them back up, but it being just me is awful.  All of this is awful.  I’m not motivated to do anything, I’m doing this because I’m supposed to because I have to take care of my kid.  
But I don’t want to do any of this, I don’t want to be doing this alone.  I don’t want to be a single mom.  I don’t want to empty the trash I don’t want to take a shower.  I don’t want to eat dinner and I don’t want to unpack the contents of a life that was once “ours” and is now so horrifically only mine.  I don’t want to share my bed with my son I want to share it with my husband.
I will do all of these things I don’t want to do, the days will build and time will pass and I hope, I hope I start to feel alive again.

Your bottles of Tabasco are in the cupboard.  I don’t know where to put most of the kitchen stuff; that was always your domain.  I’m going to finish unpacking it today; we need utensils for eating and cooking.

Unpacking a box from our room in Austin I find the plastic container holding your incense and hug it and cry.  I really didn’t like when you lit it; the air always felt so heavy.  Now the smell and memory makes me sob.  Magnus came into the bedroom and asked what it was and smelled it and agreed that it made him think of you too.  I put it in the closet shelf so I can smell it and remember.

Most of the things that made up our house, now my house, are in the garage.  It’s less overwhelming with them tucked away.

Remember how I asked you once if you would consider me to be clumsy and you said yes?  I fell hard on move-in day; watching Matt back up the Uhaul truck instead of where I was walking.  I have a huge bruise on one shin and a bruised and scraped knee on the other.

I still can’t believe you are gone.  I can’t believe in less than a year you were diagnosed and dead.

I try to think of things in terms of today or the next few hours.  Sometimes writing a list of what I want to  do in one day can be too overwhelming.  It’s so hot and gross outside.

I don’t know quite how to describe how the passing of time has completely changed.  Lengths of time like minutes, hours, days, weeks, months can seem almost equal.  Fuck I can’t articulate this very well.

On bad days I wake up and wonder how I’m going to possibly make it thru the day, or make it until Magnus is asleep for a nap and then for the night.  His energy and questions are endless.  Sometimes I can pull myself out of it and enjoy the moment I am in with him, other times I am going thru the motions, or letting the tv entertain him for far too long so I can escape to the other room and do nothing at all.

It gets better I’ve been told.  I think it’s going to get worse first, with the unpacking of the life I used to share with Chris.  Of the house we packed up together, the house that was so full of him and our lives as a family.

This grief is like nothing I’ve ever come close to feeling in my life.  I can’t quantify it; it seems endless, without shape or description.

8 years can be endless or short.  Most of our 8 years together we fought, we didn’t know what the fuck we were doing.  It was less than a year before he was diagnosed that we were finally figuring out how to fully love each other and let ourselves be loved.  Less than a year.  I had so much more love to give him, to show him.
I was crying and now I’m laughing.  Magnus has climbed into my lap and is asking if he can please smell my butt.  Then he points his butt in the air and asks me to please smell his.  Where did this come from?

I get stuck on titles for these things sometimes.

Chatted with the mom next to me at Jiffy Lube Thursday morning, she had a 3 year old and a one year old.  As I was at the counter paying and about to leave she came over and put some money in my knitting bag to help with gas on my move.  When I got in the truck I saw it was $100 and I cried at the shinning generosity of strangers.

I found your crane necklace when I finished packing our room up at Gary’s on Thursday.  I remembered how you told me I could wear it when we were in Houston.
Chris it’s so fucking hard to understand that you are dead, that I don’t get to see what you’d look like at 40, 50, 60.  That our 4 year wedding anniversary is this fall, would have been this fall.  I have to keep correcting verb tenses these days, I fucking hate it.
I smelled one of your bottles of cologne as I was packing and it knocked me down to the floor crying.

I worry about Magnus, I worry about being a mess and crying too much around him and it making it even harder on him than it already is.  He’s getting so big, it’s so cruel that you aren’t here with him.  When we were in Wichita at Little Saigon with Sandra and her daughter Magnus pointed to the Sriracha sauce on the table and said “daddy liked that!”  It had to have been something like 8 months since he had seen you eat that stuff, it made me so happy he remembers things like that about you.
It’s so hard without you, I never could have imagined how hard.  I’ve never felt a void like this, I don’t even know how describe it.  I can’t quantify this grief, no words seem capable of representing this devastation.
I love you.

I started packing up our bedroom in Austin today.
I packed your shoes, your coats, your shirts, your sweaters.  I used boxes with your handwriting on them.  I packed the shirt you wore when we got married.  I packed your underwear, your socks.
Questions like do I keep or throw away your half used bottle of body wash?  Is this ____ of yours something I want in the garage or in a box to be unpacked at the new house?  I can’t just pack everything together, because all of it is not going into the next bedroom, fuck I almost typed our next bedroom.  It’s my bedroom.  It’s going to feel so fucking empty without you.
It was only one bedroom of belongings, there is a whole household of belongings to unpack, sort, organize once I get to Kansas.
I’m going to cry all day everyday for awhile after the move.  I’m going to cry and unpack, cry and make food, cry and watch cartoons & movies with Magnus, cry and pee, cry and poop, cry and bathe, cry and cry and cry.
There wasn’t enough time Chris, we only got 8 years together, 8 years is not enough fucking time.  I’m so scared I’m going to forget everything I know about you.

Dear Chris,

Bluebird

Charles Bukowski

After the wonderful 3 mile walk this morning with Magnus I told Mary at the breakfast table that the reason I wanted to go out to dinner with them or at least sit down for a meal together last night was to tell them we are visiting KS the end of the month and moving there in June.
Dennis was out of the house for a Dr. appt.  Mary took the news just fine – no drama yay!  I thanked her for letting us stay in their home and that calls, skyping, and visits were available.
We finished breakfast and took a shower, Dennis came home when we were in the bathroom.  I’m assuming she told Dennis but who knows; I’m sure she told Brenda.
When we left for Houston Magnus said goodbye to his grandpa who was in the kitchen and to his grandma who was in the bathroom.  Dennis walked out thru the garage too to throw something away as we left.
In the past when it has been me and Chris and Magnus leaving or when Brenda and her family left everyone gathered out front to wave goodbye.  Dennis shut the garage door before I even started the 4runner.  Whatever.
They know we are leaving now and it’s coming up quick, wooo hooooooooooooo!!!!!
We are in Houston and Magnus & little Phil are playing – it’s gonna be a great weekend!

The day started out ok.

• Notify nearly all the people who are sending medical bills that Chris is dead.  
• Reserve Uhaul & loading help here in Austin for June 2nd
• Go to my counseling session & Jerald helps me work on how to phrase the move to D&M.  Even tho these people have been fucking dicks and piss me the fuck off they are Magnus’ grandparents and he is going to miss them.  Mary did take care of him for 8 months.  They have let me stay in their home.  So to make it easier I figured at dinner I would say “thank you” for all that shit.  
• Leave counseling, call Mary & invite her and Dennis out to dinner.  She seems unsure, that Dennis is having stomach problems but she will ask.  I tell her I have been thinking about plans for Magnus and I and wanted to tell them.
• Go back to Georgetown library and fax copies of Chris’ death certificate to those that requested it.
• Go back to D&M.  Magnus is asleep so I wake him up & he is happy to see me of course.  Mary tells me her mom is back in the hospital and I tell her I understand if she wants to be near a phone instead of going out to eat.  I figured we’d eat together at the table and I can just tell them here.  I want to tell them so I can tell Magnus & he can talk freely about it.  Magnus wants to ride his bike so we go outside and when I come back in it appears that D&M have already eaten in front of the tv.  
• Magnus has a fit about helping Mary vacuum.  I heat up some soup for Magnus.  He then has a fit about wanting chocolate milk and dessert with no dinner.  He re-groups after I take him to the bedroom and goes back to eat.  
• This whole time they are watching TV and Dennis hasn’t said a word to me since I got back.  Mary doesn’t ask one word about me telling her I wanted to talk to them about our plans.

Jesu – ruined

I fucking just LOVE how my former father-in-law (former because with Chris’ death I have been thrust from married with in-laws to widowed without in-laws) doesn’t speak to me when his wife isn’t around.  She is currently playing Mah-jong at the neighbors.
Magnus and I were just in the kitchen with him having a late lunch and he was cooking something.  He totally ignored both of us.  Ok he had to briefly acknowledge my existence when I was right next to him rinsing dishes out to put them in the dishwasher because he also was using the sink.
FUUUUUUUUUCK YOUUUUUUUUUUUUUUUUUUUUUUUUU.

I won’t show that his complete rudeness pisses me off so instead I want to cry but I don’t want to cry because I don’t want Magnus to see me upset.  So instead I’m typing about this fucking shit on here.  FUCK.
We are leaving soon, we are leaving soon, WE ARE LEAVING SOON.
Tomorrow we’re spending the night in Austin to hang out with Paul & Magnus has counseling on Wednesday in Austin.
Thursday I’m leaving in the morning to attempt to finish calling all the fucking medical bill people and maybe start writing thank you cards to those that have sent them.  Then I have counseling in the afternoon.  Today I’m going to invite my former in-laws to dinner Thursday night to tell them we are moving to Kansas.  I don’t know how they’ll react.  They’ve assumed that I am going to get an place here in Georgetown.
This Friday Magnus & I are going to Houston to visit Lori & her family for the weekend, yay!!!!

We are leaving soon.  Soon we will have our own house, our own bathroom, our own kitchen, our own bedrooms, our own living room.  Soon soon fucking soon.

Dear Chris,
Our sons 3 year-old brain is struggling with the concept of death.
He’s asked me if daddy is going to get better and if he is at the hospital.  I re-explain that daddy is dead and what that means.
Today he was playing with the stethoscope you gave him, the yellow one from one of your trips to the Austin hospital.  He listened to my heartbeat and I listened to his.  I explained that when someone dies their heart stops beating and they stop breathing.  I’ve told him that you were cremated.  He of course asks what that means and why you were cremated.
I told him that he and I will be moving into our own house in the future and he’ll have his own room and so will I.  He asked if daddy will have a room.  And I say no, daddy is dead.  We don’t get to see daddy ever again.
I’ve learned and read that it’s best to be as direct as possible about a death to a child his age.  He tells me he misses you a lot.  I tell him that I miss you too.  He told me today that he wants to grow a silly mustache like you had.  He makes me laugh.
It’s looking like Magnus & I will be moving into a nice duplex in Eudora around June 1st.  Unpacking our belongings is going to be hard.  Remember how you insisted on it being your writing that labeled almost every box and plastic tub?  My hand-writing is pretty wretched.
There have been such strange coincidences since you died.  Well first remember when we were waiting for the judge to marry us and I looked at his docket and the guy before us was “Christopher Crane”?
Dr. Lux is the name of the doctor that signed your death certificate.
A week after you died and I had to go to the ER and they admitted me for 16 or so hours and I was admitted to room 318, also the date of your death.
The address of the duplex is 1318 Ash street, ASH also being my initials.
Magnus is snoring softly next to me with his hand resting on my arm.  He worries that something is going to happen to me too.  He says he is going to miss me too.  I tell him I’m not going anywhere, that it’s me and him from now on.  It will take time, he lived away from us for 8 months.  And now the “us” is him and I, not you and him and I.
These words I type to you are still so grossly inadequate to describe any of this.
I love you,
boks

I’m having trouble organizing my thoughts.  My brain wants to wander off and stare into nothingness, into the vast blankness.

I’ve been reading a book my dear friend Emily sent me called “Here If You Need Me” and is a true story written by a woman who lost her husband and father to her 4 children.  Some of her wonderfully articulated thoughts cut me to the quick.
Like this:
“And in all the time that I shall live without him – time roaring and tumbling at me like some merciless, black avalanche – I will be able to tell myself that I bore our love with my own hands all the way to the last hard place.”

A life without him feels like some black hole that will suck me into a nothingness if I think about the loss all at once.
I slept in our bed, in the bedroom we shared in Austin, last Sunday and Monday night.  It knocked me from shock to grief, sadness, to a vast blankness I have no words to describe.

Today, today April 7th I picked up 12 copies of his death certificate.
Death certificate.
So fucking final.  So sterile and cold and final.

Cause of death: T CELL LYMPHOBLASTIC LEUKEMIA/LYMPHOMA WITH THYMIC PHENOTYPING

In bold letters, just like that.  I looked up “thymic phenotyping” & it basically means the mutation to his t-cells originated in his thymus.  Nobody told me that before.

And today, today April 7th I picked up his ashes also.  He was cremated March 29th.  He wants his remains spread in Cimarron New Mexico where he went hiking in his youth as an eagle scout with his dad.  There is a large urn and 6 smaller commemorative urns.  When I went to Neptune Society the Monday after he died to fill out the paperwork I selected the beautiful urn and decided that I also wanted two smaller ones with the same design so that after his ashes were spread I would have one for me and one for Magnus when he is older if he wants it.
Dennis & Mary went the next day to pay for the cremation and also ordered commemorative urns for themselves, Chris’ aunt, Chris’ uncle and his wretched sister.
I can’t stomach passing out urns with his remains to people (his parents & sister) that weren’t there for him in his horrific illness.  I can’t stomach even explaining that to Dennis & Mary.  So I picked up the large urn and the two small ones for Magnus & I and took them to a friends in Austin for safekeeping.  I told Mary that I was not ready to pick up his remains but that if she wanted to pick up the other urns she could.  I told the woman at Neptune about the situation and she understands that I’m pretending I haven’t picked up his remains.

Even tho I feel his loss much more now I still don’t feel like it’s really hit me yet.  I don’t have a safe place to express my grief.  I keep my emotions under lock & key in this house that I temporarily live and share a bedroom with my 3 year old son.
I know that when we move to Kansas and have a home of our own and I start to unpack our belongings it will knock the breath from me and I will have days when I won’t even want to get out of bed.

I’ve decided to keep my Ford Ranger pickup for now and bring it back to Kansas.  I’m not ready to deal with selling it.  And it has less than half the miles on it that the 4-runner does.

I wanted to write more, to wade more into the infinite space where he used to be and will never be again; but I can’t, there isn’t energy or privacy.  My son is next to me watching Toy Story and needs interaction from me instead of me typing on my laptop.

Dear Chris,

I’m sleeping in our bed tonight.  The last night we slept here was January 11th, when you couldn’t sleep and stayed up starting to write a letter to Magnus before we went to MDA.
It’s late and I’ve taken a sleeping pill so I can sleep.  It’s so strange being here, in this room, in this bed, in our bed without you.
I cried and now I’ve shut off my brain, it’s too much to be in this room.
I heard a story on NPR today, on This American Life, a read version of the newlywed wife of a first responder to the scene at Chernobyl and I broke down crying so fast in the car.  Her words, her words were how I felt about you and her actions would have been my actions.
I love you.  I love you.  I love you.

Dear Chris,

Magnus still loves Buzz Lightyear & runs around with his arms reaching back like Buzz’s wings and says “space ranger!” and “to infinity & beyond!”.
I’m daunted by the task of not only raising him without you, his father, but also the task of telling him who his father was, and how much he loved him.
I’m listening to the Bill Callahan station on our Pandora and it’s mixing in stuff I don’t want.  I want stripped bare Bill Callahan, not poppy Postal Service.
Magnus tells me he misses you.  I tell him I miss you too.  He asks me why I cry and I say because I’m sad and he says he’s sad too.  I tell him it’s ok to be sad.  He asks why you died and I tell him you had leukemia and he asks what that is and I tell him.  He asks why you got leukemia and I say I don’t know.
I’ve slept every night since you died with the blanket that covered you in your last weeks and your last breath.  I remember tucking you in before I would leave the hospital and it would make you feel better.
The words to describe the void escape me.  My sorrow and grief can feel like a shadow that lurks just behind, a shadow I could fall and fall and fall into.  Or maybe more a black space cut jaggedly and abrasively from the landscape of my life that I can’t look directly at yet.
Magnus’ counselor told me that even tho many people will say it, time does not heal all wounds.  Time will just change the wound.  Magnus will always have to figure out how to deal with your death and your absence from his life, as will I.  But I knew you for so much longer than he got to have with you.
We’re going to move back to Kansas and I will go back to school and study my beloved physics and math.  And because of the money you put into your social security when you worked Magnus and I are going to be just fine with money to pay for the cost of living.  You fretted those things and you don’t have to baby, you don’t have to.
Angie and Brian came to visit.  They had hoped to see you.  They didn’t get to see you with our son.
I can’t write anymore baby.  It’s too raw and I need to sleep.
du bist immer schwarz
love,
boks

from facebook:

Jerald says to write.  To write.  To say.  To type.
I don’t like night time.  I watch over Magnus & keep worrying about fevers; I’m so used to watching Chris instead.

Should I write at the anger towards his parents and sister, the horror at their absence when he needed them the most?  Or the anger that their absence also stole precious time Chris could have spent with his son.
I don’t think I can ever forgive them, but to move myself forward I will have to figure out how to at least move past the anger.  For now the anger scares me, it could leave such an ugly permanent mark if I let it.  How dare they fucking wake up and not look at themselves in the mirror with anything but guilt and shame.  How dare they even think that they did all they could.  How could they, how could they, he deserved so much more from them.

The pain of having to share a home with these people from the moment of leaving his body at the mortuary.

The pain.

I watched the world out the back window of that ambulance.  I saw it when my husband still breathed and then when he no longer did.

We didn’t even get to say goodbye.  He wasn’t lucid enough to have a conversation for at least a week before he died.

I held onto his body and wailed after the EMT confirmed that yes, my husband was dead.  Then I stared numbly and mutely out the window or at his body for the rest of the 2.5 hour ride.

Oh fuck Chris how can you be gone?  How?  We haven’t even been married 4 years, our son just barely turned 3.  There was still so much I had to learn from you, so much for you to teach our son.

I realized today that when Magnus & I get our own place I will have to set up a bedroom for just me.  That was a strange and stomach churning realization.  My mind can’t process living in a bedroom that I don’t share with you.

I don’t like night time.

Jerald was right about writing.  I keep a lid on my emotions in this home & my son is by my side nearly every step I go.  Writing this has allowed me to grieve.  I don’t even like typing that word, grieve.  I don’t want to fucking grieve.
I want you back.  I don’t want to be a fucking widow at 32, I don’t want to change my marital status on stupid fucking facebook to widow because that’s too fucking real.  I don’t want to be a single mom.

I know I’m strong and I will be even stronger now and that I can and will do this.

But I don’t want to.  I want you back.  I want to rewind the time to us in our home in Wichita and our cookouts and our late night drinks and our talks and our play time with our son and our so many things I can’t even put to words.
I look at the pictures and watch the videos and I can’t believe that’s it.  There won’t be anymore of you, of us, of us with our son, of you with your son.  That catalog is complete, your life is done and I can’t fucking believe it.

The last picture I took of us:

Widow. The word consumes itself —
Body, a sheet of newsprint on the fire
Levitating a numb minute in the updraft
Over the scalding, red topography
That will put her heart out like an only eye.

Widow. The dead syllable, with its shadow
Of an echo, exposes the panel in the wall
Behind which the secret passages lies–stale air,
Fusty remembrances, the coiled-spring stair
That opens at the top onto nothing at all….

Widow. The bitter spider sits
And sits in the center of her loveless spokes.
Death is the dress she wears, her hat and collar.
The moth-face of her husband, moonwhite and ill,
Circles her like a prey she’d love to kill

A second time, to have him near again —
A paper image to lay against her heart
The way she laid his letters, till they grew warm
And seemed to give her warmth, like a live skin.
But it is she who is paper now, warmed by no one.

Widow: that great, vacant estate!
The voice of God is full of draftiness,
Promising simply the hard stars, the space
Of immortal blankness between stars
And no bodies, singing like arrows up to heaven.

Widow, the compassionate trees bend in,
The trees of loneliness, the trees of mourning.
They stand like shadows about the green landscape —
Or even like black holes cut out of it.
A widow resembles them, a shadow-thing,

Hand folding hand, and nothing in between.
A bodiless soul could pass another soul
In this clear air and never notice it —
One soul pass through the other, frail as smoke
And utterly ignorant of the way it took.

That is the fear she has–the fear
His soul may beat and be beating at her dull sense
Like Blue Mary’s angel, dovelike against a pane
Blinded to all but the grey, spiritless room
It looks in on, and must go on looking in on.

My heart, my husband, my best friend died with me by his side yesterday March 18th.

I can’t believe he is gone, it happened so fast.  I am glad he is not in pain anymore.  The doctors told me Thursday morning that there was nothing more they could do for him.  He died close to 4 p.m. the following day.

I’m numb and heart broken and I’m so many things that words can’t express.  I wasn’t ready.  Time seems to have stopped and be going in fast forward all at the same time.

CT scan came back normal.

This recent chemo has left Chris weak enough that he is unable to walk unassisted from his hospital bed.  Even with assistance he can’t walk very far.
He is too weak to go to the Rehab floor at MDACC so he will be getting transferred to a hospital a few blocks away (Kindred) so he can work on getting the strength back to walk, dress, and shower on his own again.
Right now he is too disoriented to be discharged from MDACC.  The staff & I are working together to figure out how to re-orient him.  The doctors are adjusting his various meds and I have a list of things that help keep him calm.  He doesn’t know where he is much of the time, the day it is, the month, or the year.  When he does know those things he isn’t able to articulate it to me and medical staff.  He has trouble finishing sentences.  He is anxious and scared.

With his physical capabilities as limited as they are he can’t stay at the trailer/rv I moved us into last week.  A few days ago I got a call from one of the organizations I put us on the waiting list for housing, Aishel House.  Here is a link to their website:
Aishel House Mission statement

I can’t even begin to express how thankful I am that we have this studio apartment to stay in at a reduced rate for the next ___ months.  This will be the 5th place I’ve moved our belongings to in Houston in less than 2 months and it’s such a relief to know we have somewhere to stay that we can afford and that meets our needs.  I’m within walking distance of MDACC.

I’m exhausted and trying to figure out how to fill my empty tanks up when Chris needs someone by his side that is strong and there for him everyday.  Everyday is roller-coaster of emotions and events.  I’m hanging on as best I can, it’s a lonely road.  I’m thankful for the new & old friends that are helping me thru this.

If you want to help don’t wait for me to ask.  I have only enough energy to bathe, feed, and clothe myself so I can give Chris all my strength.  I’m sobbing in the hallways but I have to hold steady in his presence.  He needs strength.  If you can come here and be strong for him then please come.  He needs it and I need it.  Having me be the only person that has consistently been here for him is wearing us both down.

When I can get a strong enough wifi connection at the hospital or at our apartment I skype with Magnus.  I have to make sure he sees me smiling and strong too.  I may be crying before and after the call but I can’t let my husband or my son see me sad and worn out.

We will be here for at least 6 more months.  IF he responds to his current chemo then he’ll need a few more cycles of it.  IF they find a stem cell donor he’ll be in the hospital for a month.  Then he will have to  go to appointments everyday for 100 days after his transplant.  Throughout this whole process he has to have 24/7 care.  I’ve been doing this for over 7 months with him; I and we can’t keep doing it alone for the next 6 months.

Moving here is my goal for us in the next month to two months.  There is a lot of planning and figuring of logistics out but it’s doable.

Chris is near comatose today, from drug interactions (chemo & other meds he must be on).  It’s been a rough day and I’ll need to be by his side for awhile – I’m planning on staying here until he’s more clear and that could be a day or two or more.

State budget cuts mean that they don’t have staff available to watch just him, MD Anderson is a University of Texas institution.

His balance is very bad – he needs help getting out of bed – he’s had some severe diarrhea today.

I found out sister-in-law is back from Vegas because her husband sent me a picture message of my son this morning.

I’m still beyond upset with them and feel more and more isolated with his family – his aunt and uncle (his mom’s siblings) aren’t communicating with me much either.  I don’t know what his mom has or hasn’t told them about things.  After the latest blog update neither of them commented or messaged me.  I’m feeling frustrated and ganged up on, no idea if that’s real or imagined.  Because of some of the chaos (primary parent was alcoholic)  from my childhood I tend to doubt my perception of events around me.

I realize that I tend to share some of the more dramatic moments of my life, like recently the situation with his family, because I don’t trust my view of events and use outsiders as sounding boards.

I’m trying my best not to lash out anymore tho – I texted his mom this morning and told her happy birthday.  Not too long after I got here and saw what bad shape Chris is in someone came in the room when me and other staff were trying to get him out of bed and said someone was on the phone thru the nurses station and wanted his room phone #.  I told them to not give that out because the last thing he needs is his room phone ringing when he can’t even keep his eyes open or control his bowels.

I’m guessing it was his mom, I have no idea.  I’ve stopped texting his sister and dad since they starting ignoring my texts on tuesday.

I texted his mom and told her that Chris would call and wish her happy birthday if he could but he is near comatose from med interaction and having diahrrea problems and asked her when Magnus is returning to Georgetown, she replied they are going back Sunday.

I feel betrayed and because of their joint deception I’ve lost trust and my tendency is to want to put up tons of barriers between us, that’s my defense mechanism.  But I’m fighting that destructive instinct because they are taking care of my son and I am taking care of their son.  I can’t and won’t let this discord between his parents and me effect their relationship with my son.  He loves his grandparents and they love him and their home has had to be his home for 7 months now.  His mom does not know I’m making plans to move us to Houston in a month or two and that my hope is to bring Magnus to live with us.  She will initially view it as me retaliating and I don’t need to introduce even more emotion to this situation.

Realizing that our apartment options will be even more restricted and him being in the condition he is today has been tough.  I’ve been crying in the hallways here but pulling myself together when I’m in the room – the last thing he needs is to see me upset when he can barely process his surroundings or stay awake.

I started writing this nearly 5 hours ago.  I’ve been typing in between helping the nurses care for him.  It’s so cruel that when the meds leave him with the lack of awareness and strength to even get out of bed is when he has frequent diarrhea he is retaining too much fluid from what they are pumping into him so they had to give him something that makes him pee a lot and frequently.

End of rambles shambles.

Despite the days events seeming to get worse I’m feeling better than I was this morning.  Which is good because it’s going to be a long night ahead.  I have no idea how long he’ll be out of it like this, could be days but I sure hope not.

I woke up today exhausted and frustrated with his family.  I texted his mom to ask about magnus and she texted me back this lengthy explanation basically saying she was waiting for me to tell her if Magnus could go to daycare or not.  So I called and explained once again, that is not what I asked her to do.  I let my frustration and exhaustion get the best of me and yelled and cried on the phone with her.  Realized that was stupid and got off the phone.

His sister & father stopped responding to my texts after I found out she flew to vegas.  None of them have texted, much less called, words of support to Chris since he has been here.

I sent this text to all three of them:

“Your son/brother isn’t stupid and he is very aware that it isn’t a priority to call or text him or visit him.  His condition could turn critical overnight whether you care to face his reality or not.  Your actions are not showing him love or support.  His experience is horrifying and the fact that his family is choosing not to be here for him is cowardly.  We have had friends drive 11 hours to see him and you who are in the same state have only excuses for why you are not here for him.”

His parents are both retired – there are no job schedules to juggle.  I sent that this morning and of course his sister & father did not reply.  His mom replied saying that her doctor told her she couldn’t visit him because of her sinus infection – the one she had 4 weeks ago and doesn’t have any longer.  These people are beyond my understanding.  She then told me that where exactly did I expect them to find the money to come visit us – hotels are expensive!  REALLY?  But it doesn’t cost money to drive 8 hours to watch Brenda’s kid so she can go to Vegas?

I just have to realize that communication with these people isn’t possible and trying to rationalize with them isn’t either, so I will no longer look to them for support beyond taking care of my son until I can get him here after Chris and I find a place to move and get settled in.

So after today’s nightmare with his fucking family I’ve hatched a plan to look into moving to Houston and having Magnus come live with us.

Choosing Houston because of course that’s where his care is and he will probably need to be at MD Anderson on a daily or weekly or monthly basis for the next year.

It would be wonderful to have a home to go to when he isn’t in-patient.

We could have Magnus stay with us.  I know that he can only stay with us if we have a support system to help out with him.  The wonderfully fantastic Lori Mustachio that I’ve mentioned before said she’ll look seeing if Magnus can go to the same daycare her nearly 3 yr old son does.  She said she could help out & watch Magnus when we would need the extra care.

She’s also a native Houstonian (is that how you’d say it) and so she can help me look for a place to us to live.

I’m also going to talk with one of Chris’ friends from childhood that lives here in Houston.  He’s come to visit Chris at the hospital, at our hotel, and he texts me frequently to see how we are.  I’m going to see if he is able to be a support person for Chris’ care if we move here.

I know if I add  Magnus to the mix that I will need support for Magnus and Chris in case/when it is needed.

What I’m asking from Lori and Chris’ friend is no small favor.  I’m so lucky to have met Lori recently and have her support.

So if Chris’ friend, who is coming to visit him tonight at the hospital, thinks he can help out sometimes with Chris then I’ll move forward with plans to move us here.

It probably won’t happen for a month or two because there are things to plan – find housing that is located near the medical system that meets our need and that we can afford, apply for state aid, move our belongings from Austin to here, move Magus & his belongings from Georgetown to here, unpack a household.

It will be a lot to juggle and figure out but it will be worth it I think – his parents taking care of Magnus is NOT working and it isn’t going to magically get better.

I’ve had some people (Sandra, Alex, Sol, & anyone else) ask me how they can help us out.  If this move ends up happening I will need help getting our belongings from Austin to Houston and unpacking them.  Obviously I’d give advance notice of that date for anyone that could help out.

This is kind of stream of thought.  The events of the days since we were told that he isn’t responding to the chemo have all blurred together.  I’ve been so incredibly distracted with the shit storm of trying to get his parents, really his mom because his dad simply does not respond to texts, to communicate with me about basic things.

His mom starts sending me these long text messages listing out the 3 different options that can happen tomorrow with Magnus and how that will effect her being able to take care of her mother’s stuff ( what the fuck is Dennis doing????).  So I end up having to call her to get her to stop sending me these texts about things that are not my decision to make.  If that’s the case then I should just be taking care of Magnus myself right now.  I told her in a text earlier today that I don’t ever want her deciding what I should or shouldn’t know about my sons care.  Her response is to then send me these long texts asking me to make every decision because that’s what I asked right?  UGHHHHH

Phone call doesn’t go well, she brings up things that have nothing to do with what we are talking about and does not listen to me when I say I don’t have the time to deal with this shit.  She tells me that she lied to me about Brenda not working the days at the daycare that Magnus is there because she thought “I couldn’t handle it and would go ballistic”.  No fucktard I will go ballistic when you LIE TO ME ABOUT MY SONS CARE.  Then she starts crying and talking about my life is not the only one that has changed and she has no life now but that’s ok because she loves Magnus.  Uh what?

1 – that has nothing to do with her & all of them lying to me

2 – ask your husband to help out more or take your wonderful neighbor up on her offer to watch Magnus so you can get a break.  Mary refuses to ask for help when she clearly needs it.

3 – I’ve never ever said that our life has been the only one effected.  At least she still lives in her own home.  Taking care of a toddler is a fucking cakewalk compared to what I’m doing.  Chris did what she is doing before he was diagnosed and he didn’t describe himself as having no life.

Fuck I’m still so pissed off at them and I don’t need to be spending my energy on this bullshit when things are the way they are with Chris right now!!!!!!!!!!!!!!

I’m DONE making sure I update them via text message daily when they can’t even fucking respond to my texts.  I’m definitely done trying to play nice with his sister.

As furious as I am with his parents, they are still Chris’ parents and Magnus’ grandparents.  But I’m distancing myself from them.

Hopefully it works out to move us three to Houston and we can attempt some sort of family life again.  I can’t deal with only randomly seeing Magnus anymore.

I’m flabbergasted that my sister-in-law flew to Las Vegas this morning with her husband to celebrate their honeymoon, leaving her parents to watch their child and Magnus. Hence the reason for a trip to El Paso that Chris and I were only told about a week ago.  Obviously this trip had been planned for awhile – plane tickets were purchased.  Today was my son’s first day ever at a daycare facility and I was ok with this because it’s the daycare that sister-in-law works at. But all parties involved decided to lie to Chris and I and neglect to mention that she wasn’t even going to be there. I was told the only reason for the trip was for Mary to take care of crucial things regarding her mother’s care that can’t be done long distance. TOTAL LIE.

That’s so fucking wonderful that Chris’ parents can travel 8 hours away so Brenda & Jason can celebrate their anniversary.

We are 3 hours away in Houston and have been here since January 12th – no visits from them.

Our anniversary, Christmas, our sons birthday, my birthday and Chris’ birthday were all spent in a fucking hospital. We struggle to figure out basic funding for our lives and sister-in-law has not ONCE offered financial or emotional support. She has not seen her brother ONCE since his diagnosis in July. I’m fucking over it. I bend over backwards to communicate with them about Chris and I get no responses to texts I send about Chris being in the ER and disoriented.

I’m not even being told basic things like what time Magnus is going to daycare, what days, how long will he be there – I have to ask repeatedly.

And there isn’t a fucking thing I can do about it right now because I HAVE to be by Chris’ side – there is so much going on that I haven’t even updated his blog!

My brain cannot even begin to process why they are acting like this.  But they are, and I have to deal with it on top of everything else.

I’ve come to realize in this horrific process that a lot of people, including some close family, have no clue how to handle an aggressive cancer diagnosis with a poor prognosis.  It’s hard for me to be understanding when I don’t get a choice about whether or not I can deal with it – no matter how hard this is for me it’s harder still for Chris and more than anyone HE needs support.  I must be and will be by my husband’s side to get him thru this nightmare.  Our lives will never be the same.  Basic questions like “where do you live and where do you work?” can bring me to tears at times.

We have no home, our belongings are in storage.  My job is unpaid and it is by far the hardest job I have ever had to do.

The leukemia Chris has is incredibly aggressive and two different chemo protocols are not slowing it down.  We don’t know yet what they are going to try next, maybe a clinical trial.  If they are able to get him into remission he will have to have a stem cell transplant.  The odds of this disease not killing him are not good.  This is our grim reality.  There will be no point in his life that he will be cured.  All we can hope and work towards is getting him in remission and keeping him there for as long as possible.  Because he has relapsed while in treatment his odds of relapsing again after remission has been reached are very high.

Chris spiked a fever and the hospital says I can drive him straight back to Houston and to the ER. Dennis and Mary are at the hospital with him and I go to their house to frantically pack my bag.

Magnus follows me around asking “momma why are you leaving?”

I tell him I have to take care of his dad he says “momma don’t you want to take care of me?”

This is breaking me into pieces.

Chris turned 36 today – in the hospital of course.

I suggested to Dennis that maybe he could bring Chris some lunch since the hospital food there sucks. He laughed.

I took Magnus to visit his dad. Magnus didn’t want to wear the face mask to protect Chris from his germs so Chris wore one.

Will this ever end? Will we ever get to be a family again?

An hour after getting to Georgetown Chris started running a fever so we are now at the ER here. Leukemia is an asshole.

Got about 3 hours of sleep. Chris is in the ER still, don’t know the plans for him yet. Waiting again, how surprising! His parents brought Magnus in to see him this morning while I was catching a nap at the hotel. I’m going to stop and see Chris and then head over to see my Magnus!!!

The results of yesterday’s bone marrow biopsy show 86% blasts, not good news. Dr. will decide by next Tuesday what the next step is – odds are a completely different chemo and maybe clinical trial. Then once he gets into remission a stem cell transplant. We will be in Houston at least another 3 months. I planned on updating the blog with more info but we were given a day off so we are heading out tonight to see Magnus and then we’ll be back by Saturday morning for his labs, IV meds, and blood transfusions.

So tired of the endless waiting. So fucking tired of being away from my son. I haven’t seen him in 45 days, I haven’t lived with him for over 7 months. This is a fucking shit show and it’s not ending anytime soon. And my fucking mouth is killing me from a tooth that’s half missing in the back corner of my mouth. Dentist you say? I’d love to if I had the money/time/insurance. Who takes care of the caregiver? You do Amanda, you do. At least the chest pains that sent me to the ER are nothing to worry about. Dr. if they happen again perhaps consider beta-blockers.

Our friends Alex and Sol drove all the way from Wichita, KS to visit Chris. We went out for a delicious dinner at Ragin’ Cajun and the oysters and crawfish were fantastic . We followed it up with some dessert at the House of Pies. Chris ate more than any of us! Good night indeed!

He’s pretty tired today and was grumpy with me for persisting in getting him to get out of bed for his 11:30 appointment.
Newly prescribed anti-seizure med Levetiracetam:

What side effects can this medication cause?

• drowsiness
• weakness
• unsteady walking
• coordination problems
• headache
• pain
• forgetfulness
• anxiety
• agitation or hostility
• dizziness
• moodiness
• nervousness
• numbness, burning, or tingling in the hands or feet
• loss of appetite
• vomiting
• diarrhea
• constipation
• changes in skin color

The shaking of the bed translated to something in my dream until it pulled me awake, the abrupt transition to quick understanding that something very wrong was happening.  The events blurred together, a series of reactions.
Turn on the light call out to him, call his name and he’s shaking/thrashing/jerking so hard and his eyes are wide open with a desperate look focusing on nothing and his fists clenched so tight and he can’t respond to me.  Call 911 and rush out description of him, of hotel address, try to listen and understand to what the operator is telling me.  Make sure he is breathing, turn him on his side if he is not breathing.  During call he stops shaking and jerking and foam comes out of his mouth and then blood drips out the corner of his mouth but he is breathing and they are loud strange breaths I cry out his name and he can’t respond and I go closer so he can see me and tell him if he can understand me to blink his eyes once and he doesn’t blink.  His is still breathing ok and I don’t move him at all.  I quickly put on clothes while talking to him and wait.  I look out the door and down the hall waiting.  I cry.  5 EMT’s crowd into our small room and some gather by the bed and I answer questions and i go next to him and hold his hand, now he seems able to talk and answer questions and he is confused and scared.  
No he’s never had a seizure before.
They take vitals and check his blood and recommend a trip to the ER at MDA and he wants me to take him instead of taking the ambulance and I help him change his clothes, he lost his bladder during the seizure.  They walk with us down to the truck and I take him into the ER.  We stay there for 14 hours or so.  I’ve had less than 2 hours of sleep before he wakes and he thankfully sleeps a lot while we wait and wait and wait for someone to tell us what the fuck is going on.  




I’ve started thinking about his leukemia as a black hole we orbit.  It’s gravitational pull shapes the path of our celestial body, our lives.  It’s such a massive force it has changed the shape of our surface and we are slowly adjusting.  I don’t have a good enough grasp of astronomical concepts to fully articulate this correlation in my mind.  


But I also think of the concept of graviational lensing:
A gravitational lens refers to a distribution of matter (such as a cluster of galaxies) between a distant source (a background galaxy) and an observer, that is capable of bending (lensing) the light from the source, as it travels towards the observer. This effect is known as gravitational lensing and is one of the predictions of Albert Einstein‘s General Theory of Relativity. (copied from http://en.wikipedia.org/wiki/Gravitational_lens)

This leukemia being the huge cluster of galaxies at position 2.  Position 1 was the life we saw planned out for ourselves, was the life we had.  We are here at position 3 and our view of the light from the young, star-forming blue galaxy near the edge of the universe (position 1) that used to be clear is now skewed from the sheer gravitation mass of the cluster of galaxies (leukemia) at position 2 and we are left with multiple, distorted images of the background galaxy.  Throw in the consideration that what is at position 1 in reality is a view of something that happened a long, long, long time ago in the past and that adds an interesting level of physics philosophy that I am not fully able to understand or articulate the little I do understand now.  The universe, holy fuck this giant massive universe is the most magical beautiful mystery.  The universe is my god and I worship it.  I think of it’s vastness and it goes on forever and we’ll never know most of the things about it.  I never wanted to live forever until I thought about the fact that if I did, that would mean I could be around for all the mysteries that we will unravel about it.  
Chris and I had a discussion awhile ago about what we’d want done with our ashes.  I said I really didn’t care because I’d be dead.  Then I thought wait, if it were feasible to release my ashes into space I’d take that.  


Recounting the horror of the seizure was hard but thinking and reading about gravitational lensing has calmed me and distracted me from this present.  We are at MDA in a room at a trans unit where Chris is getting his daily IV dose of his anti-fungal and he’s snoring loudly and I’ve been typing and listening to the Bill Callahan station I made on Pandora.  We’ll leave soon and I’ll tuck him back into bed to rest for the day, it’s a long week of tests and procedures and results and possible admission back into the hospital wing of MDA for chemo to get that fucking huge cluster of leukemia lymphocyte galaxies to shrink the fuck down and let the light thru without bending it.

Card in the mail from Chris’ Uncle Patrick and his mate, Rosie.

It is simply perfect and means so much to me.

I never wear hats, thought I’d try this one out.  It works well for the days that I need to wash my hair.

It’s going to be a 10 hour day at cancer center today, a 14 hour day tomorrow.

Arrived there at 1 today and will hopefully be back at the hotel around 11.

We need to be back there at 6:45 tomorrow and will be there until 9 or so tomorrow night.

I came back to the hotel to get the package of mail Gary  sent us from Austin and I am overwhelmed. So many bills and the medicaid Magnus was approved for almost 2 months ago but hasn’t even used because I have no time to find him a dr. is being canceled unless I reapply with info I don’t even know where to find. At least I have all the stuff to file our taxes. Chris is calling from the cancer center in pain needing me back ASAP by his side. FUUUUUUUUUUUUUUUUUUUUUCK.

We were at MD Anderson 10 hours yesterday and will be here for a total of 13-15 hours today. We have 5-6 hours left and it doesn’t even feel like the same day anymore. Tomorrow we should only have to be here for 3 hours, woo hoo! We have been here everyday for the last 34 days and have at least 9 more consecutive days of appts here to go.

what is this what are you doing amanda is this helping?  is there even any way to help this?

alone in a hotel, tired of fucking hospital rooms, tired, fuck that word does it no justice, tired tired TIRED of missing my fucking son of seeing him over skype on a fucking computer.

I want to hold him in my arms, I want him to bury his head in my chest when he wakes up from his nap and is cranky.

I used to know my little boy better than anyone and I don’t anymore and I can’t describe that feeling, it’s fucking horrible.

I don’t know how to cry on anyones shoulder, even when I probably really need to.  I don’t want to call anyone up on the phone and explain any of this, I want to glaze over it, past it.  But I don’t know how far, how long that is.

So for now I will drink some wine, skype again with my son, and keep the pieces of myself together another day to get up tomorrow and figure it out again.

I’m in a place at MD Anderson called “the learning center”.  It’s full of stuff for resources on cancer along with computers and printers.  I stopped bringing my laptop along – the network is usually too full to get onto.
There is a guy sitting 3 computers down from me smacking his lips or something and its making my ears itch on the inside.
I’ve been writing entries for this blog in my head for weeks, but life has been too busy and on my downtime I’ve chosen to not spend it in front of the computer.
I started a scarf for Chris’ mom in lime green before we came down here.  I didn’t knit at all the 2 weeks Chris was in the hospital and started knitting again recently.  I’ve grown impatient with it and want to finish it already.  And now that Chris is considered to have leukemia (awareness color orange) and not lymphoma (awareness color lime green) I can knit another scarf in a much more tasteful orange color and give both of them to his parents.
I want to knit some more dishcloths for Lori & her family, whom I stayed with for about a week here.
Chris has a bone marrow biopsy scheduled for the 15th at 8 a.m.  As the date nears my stomach will start to bind itself in anticipation of the results.  We might get preliminary results back later that same day, or maybe not.  He has a PET scan scheduled for the 23rd.
If his cancer still isn’t responding (termed “refractory” in the medical studies I’ve read) then his doctor will be looking into investigational treatments. I’m not sure what that means, maybe clinical trials. 
Chris’ whole mouth is numb now.  The left half went numb a few days before we left for Houston.  A week later from my own research I knew that it was an indication of the cancer in his brain before it was confirmed.  Because his mouth is numb he frequently drools and has no clue, then he’ll realize it and feel “like a retard”.  I don’t view Chris differently or see him as being weak, to me it’s as simple as his mouth is numb so how could he know he’s drooling?  I tell him that I don’t view him any different and I hope it reassures him in some way.
Thank fuck for the internet and all of the medical data available on it, researching much of this stuff on my own has helped calmed me in moments of sheer panic.
Chris is up on the 10th floor getting his IV infusion of “caspofungin” an antifungal med and some platelets before his lumbar puncture around 1 p.m. today.
The facilities are much less busy today, the coating of ice Houston received has thrown the city into a winter hazard level of operation.  Schools, roads, etc closed.  Patients haven’t made it in for treatment and many medical staff are unable to get here as well.
I’m hoping we’ll get back to the hotel around 3 p.m. at the latest.
Chris’ white blood cell count is 0.2 today, I’m daily amazed he doesn’t have a neutropenic fever.
Him coming out of his mental fog has helped calm me.  And sleep, glorious glorious sleep.  I don’t remember being this frazzled when Magnus was a newborn.  In many way Chris has reminded me of a newborn, but a much larger and sick newborn.
It’s hard to imagine anything but how things are right now.  It’s almost just as hard to imagine him dying as it is to imagine him in remission and done with maintenance chemo years from now.
There is no cure for leukemia, he will always be at risk for the disease to come back.  Because it is so aggressive just one hidden immature lymphocyte cell can develop rapidly and threaten everything again.  Our lives will never, ever be what they were before his diagnosis.  There may be stages at which some of the breath I have been holding can be let out, but there will always be a cause for alarm.  And that’s if, IF, he gets into remission.  He should have been in remission months and months ago.  It shouldn’t have fucking spread everywhere.
How horribly strange that it is now hard to imagine living in a home with my husband and my son and I.  A week without a hospital or doctor visit would be utterly bizarre.  A life, a routine, that I couldn’t have grasped a mere 8 months ago is now something I can’t see out of, that I can’t picture my life operating without.

I have been trying to find the words for symbols and images that give me comfort.  When this life starts to feel like a weight pressing my face into gravel until I’m spitting blood and tasting the flat empty rock in my mouth, I think of  a rope, a strong thick rope and it is coiled around my arm and I’m anchoring this life, I’m holding myself and my husband up above the surface of despair and pulling us forward.

There’s something empty, something clutching

How do I feel, what do I need?

I need what I can’t have, I need my husband back.  I need him to be able to keep his eyes open for more than a minute and to speak clearly and hold a conversation with me.  The fact that he can’t do this has scary implications I don’t want to think about.
I want the fucking tests done NOW and the results back NOW and a diagnosis/prognosis/treatment figured out NOW NOW FUCKING NOW.

I want whatever it is that is strangling my heart to let the fuck go.

I want a few hours of life with a healthy husband.  I want the mundane problems of life back.  I want my eye to stop randomly twitching.
I want to know what is in my husbands body and how to get it out, how to kill it without also killing him.
I want my husband to play with our son and run around the yard laughing and laughing.
I want to grow old and gray and saggy and cranky with my husband.