floating isn't as great as it sounds...

I should be studying. I have a test that I'm ridiculously underprepared for in about three hours.

Instead I'm sitting at my desk staring across a space of about four feet at the pictures covering my husband's work space. One picture in particular, Damon. He was about a month old, wrapped in a blue baby blanket, fast asleep. I was holding him in this picture. You can't see me but I remember. I remember.

I remember feeling like I could protect him. I remember believing in a future.

I often am overwhelmed and frustrated by a world that refuses to acknowledge pain and most ardently refuses the reality of death. It this world of happy smiling people I am a spector floating in blacks, whites, and greys while everyone else can see color. It is a lonely, lonely way to live. There is a chasm between me and you... always.

While I am certain that people in general could and should (there's that word I hate but there is no way around it) pull their heads out of themselves and insist on an awareness of the suffering and reality around them I also understand the refusal. Living in this place where nothing is solid, where I know that my son's, my husband's lives could me yanked out of my grasp at any moment, where I know that I can not protect my children is... there is no word for what it is. There is no air. There is no ground. There is nothing to orient myself, no way to get a grip. It's horrible.

The death of a child steals a child's life. It also steals security. It steals comfort. It steals certainty.

I am sure of almost nothing...

Until next time.

It's my birthday

And I'll cry if I want to...

I turned 34 this week. I look at aging differently now. I think we all know how our culture abhors aging. Wrinkles? Sagging breasts? Cellulite?!! Dear Lord, certainly there is nothing worse!!

It's an all out war to consciously reject these perspectives. I am determined to embrace aging. Damon didn't get to age. His wrinkles and age spots were stolen from him, and from me. 

Yes I'm 34, damn straight I'm in my mid 30s. I'm aging. It's a PRIVALEDGE.

That being said, the actual day is brutal. I always relive, over and over, my last birthday when he was alive. My incredible fullness on that day, my thought "this year is going to be the best yet," smack me hard across the face. So, while I insist on embracing aging I hate my birthday. It may be the most painful of all of the gut wrenching holidays. I don't think I have to tell you what I spent most of last week doing.

But Friday I did this

That's 5 bands, permanently announcing 5. There are 5 of us, always, whether the world can see him or not he is one of us. It's another silent scream and it eases the ache. It makes me feel like no matter how uncomfortable his death makes people the world can't make him go away no matter how hard they try. He is mine.

No one told me

Good things scare the holy living hell out of me. Bad things seem par for the course. In an emergency I function fine, well in fact. In an emergency I kick ass.

When my rainbow was born premature I was all business. Six hours after his birth I was standing next to his bed in the NICU in another city throwing a barrage of questions at his doctor. I didn't crash until he came home.

When I had to epipen my eldest and spend the night calming him in the hospital I rocked. 

But give me birthdays, milestones, accomplishments, happiness and everything crumbles. I don't know what to do. I don't know how to handle the fear that a day playing at the park spells immanent death for one of my children. I don't know what to do with my fervent resistance to accepting moments of peace because I will pay for them so dearly.

C.S Lewis wrote that no one told him grief felt so much like fear. I think grief feels so much like fear because death leaves behind the enduringly cold shadow of fear. It takes away the illusion of safely and forces the bereaved to perpetually grapple with an exposed reality and I have no idea what to do about it.

Until next time...

I lived

The vast vast majority of my life I am surviving. I am holding it together for the next five minutes, just get through the next class, just keep breathing for one more day. I survive. That's not to say that amidst the survival there aren't shafts of light, breaths of clean air... moments. There are. There are moments. But most of the time I'm surviving.

Today, I lived.

I lived and it hurts so much I can't breathe...

I spent the morning in the lab, believe it or not that's really fun for me. I worked and researched and figured things out. More pieces of my puzzle fell into place (or rather, I wrenched them into place with blood, sweat, and tears). Then I tagged out with my man and spent the afternoon contentedly donning my mommy hat. We had snacks, ran errands, made enormous messes and some dinner, giggled... it was thoroughly mundane and the most beautiful perfect afternoon I could have asked for.



A crash has been coming for a while... You know, I run. I'm so afraid. I'm so afraid of the pain, of the gaping maw inside of me. Afraid of the way it sucks me in and I'm completely helpless to stop it. I just endure until I'm finally strong enough again to wrench the doors closed and collapse in front of them sobbing. I'm afraid.

Tonight as I got ready for bed, walking the edge of a crash, hoping that I will last one more day, my husband sent me these words:

"I Choose You"

Let the bough break, let it come down crashing
Let the sun fade out to a dark sky
I can't say I'd even notice it was absent
Cause I could live by the light in your eyes

I'll unfold before you
What I've strung together
The very first words
Of a lifelong love letter

Tell the world that we finally got it all right
I choose you
I will become yours and you will become mine
I choose you
I choose you
(Yeah)

There was a time when I would have believed them
If they told me you could not come true
Just love's illusion
But then you found me and everything changed
And I believe in something again

My whole heart
Will be yours forever
This is a beautiful start
To a lifelong love letter

Tell the world that we finally got it all right
I choose you
I will become yours and you will become mine
I choose you
I choose you

We are not perfect
We'll learn from our mistakes
And as long as it takes
I will prove my love to you

I am not scared of the elements
I am under-prepared, but I am willing
And even better
I get to be the other half of you

Tell the world that we finally got it all right
I choose you
Yeah
I will become yours and you will become mine
I choose you
I choose you
I choose you

I have two beautiful living children, an amazing job that I love, and the kind of romance that most people only read about in books... and at the end of this perfect day I am filled with pain and fear.

It seems so unfair that the black hurts less than the light.  Maybe this is why people hide. Why those deeply devastated never emerge from the dark. I get it. I so so get it. 

Maybe someday I'll learn not to run.

Until next time...

“What are my hopes for 2015?” Thompson wrote. “That we all stay healthy and don’t die.”

Often, other bereaved parents say it best. This time its Seth at Smiling Through Tears.

"I’m bitter and jaded and resentful, but I’m not the only one. And that’s okay."

... And you'll always be entertained?

You have to learn to laugh at yourself, right?

It's been a rough week (in case you didn't catch that from my last post. I've been hella sick.

We thought it was pneumonia... Normal white count. It's bronchitis. Antiinflamitories and antibiotics.

Yesterday I was curled up on the floor I was hurting so bad. Then, just for kicks, my body sent ice water down my left arm. Oh geez

This morning I had the "CALL YOUR DOCTOR!" order from the hubs.

An EKG, bloodwork, ultrasound, UA, chest X-ray, two diagnoses, and my dignity later...

"Maybe it's heartburn"

I feel like an idiot. And my entire left side hurts. And I really want to go to sleep.

I'll try laughing a little later.

Until next time...

This one has the "F word" (in the link anyway)

http://abedformyheart.com/blog/happy-f-ing-new-year/

A friend sent me this link. It pretty much sums things up.

It's been a wicked couple of days. Panic attack induced asthma attacks and oh, turns out  I have pneumonia. Last night my eldest had an allergic reaction that sent him to the same hospital, the same emergency room... I was wrapped in worry for my living child and torn apart with the memories, the flash backs of my dead one.

I'd like to think I'm not the pity party type (maybe I am) but ARE YOU FREAKING KIDDING ME?!!!

Everyone is home. The big boy is ardently resisting our efforts to make him rest while all I want to do is sleep.

Right now the "F word" is the only one I find appropriate.

Until next time...