It's about me....

Parenting makes me uncomfortably conscious of my flaws. No one can adequately express to us before we, in our complete ignorance, cross that threshold to become the protectors and guardians of the people who are more precious to us than any other thing in all the world, how daunting that task will actually be. They try... they try to tell us that our hearts will beat outside of our bodies, that we will have to teach them everything, and that they will learn everything from us. That last one is a biggie, not that the others are not, but seriously, these little humans learn who to be from us. To quote Marty McFly "that's heavy."

My eldest has to face things on a daily basis that most adults couldn't even imagine. Most people couldn't deal with flashbacks, with panic attacks, or with profound anxiety, with debilitating separation anxiety... He does and he's only nine. He's nine and he's seen his brother die and his mother completely disappear. Now he looks to me to try to navigate the pain and the fear.

Honestly, this may be the only thing that would ever make me deal with my fury. Anger is where I go. Anger is "safe," anger is the huge, vicious, black protector of pain.

I see anger in my son.

There is so much I use to rely on that just doesn't hold for me anymore. My parameters for morality were based entirely on religion... none of that works now. I've had to rework my frame of reference. Here's what I've figured out. The way I behave, the way I choose to react to the world is about me. It isn't about society, or Jesus, or Budda, or Vishnu, or Allah... it's about me.

Who do I want to be?

This is the question I have had to put to my son at such a young age. Yes, life isn't fair. There is no caveat to this. You've been cheated. You've been viciously wounded and that is NOT FAIR. Denying this to someone so deeply hurt only exacerbates the wound. Yes, you have every right to stew in your anger. Yes, you have every right to hate the world and all of the people with intact families, healthy little brothers, and parents who are not afraid of crowds and sometimes just disappear inside themselves.

But...  is that who you want to be?

It has taken me years to get to this place, to get to a place where I am even willing to consider this seriously. Who do I want to be? Sometimes I'm infuriated by the question. Sometimes I just want to be pissed. Sometimes I want to be a jerk. The world doesn't even come close to comprehending the pain of a bereaved parent, not the fear of a moment when my mind wanders, not the nightmares, not the constant, deep, resonating ache. Sometimes I just want to stew in my resentment... Sometimes

But most of the time I want to be a person who can be trusted. Most of the time I want to be a person who is invariably kind, a person who makes someone else's day a little better, even if I don't know it, someone who is an advocate and defender of those who are not yet strong enough to defend themselves. Ultimately, I want to be a healer, not a destroyer.

Being mom makes me battle this dichotomy of grief. It makes me actively choose. Am I going to teach my son to choose to continue to open his heart to inevitable pain and live a life of healing or will I teach him to close his wounded soul to the world and suffocate in his own pain and anger?

One minute at a time I am asking myself, is this who I want to be?

Until next time...

Tired, sad, and feeling quite sorry for myself... (and apparently pissed... pretty damn pissed)

I said to someone recently "It is odd to be so closely aquatinted with terror." We live it, we breathe it, we eat it, some days more than others but still, always.

My kids are sick, both of them. It's scary for me when my eldest gets sick. I remember the first fever he had after Damon died. He slept in my bed with my hand on his chest for two days. Terror. In my mind fevers mean death. Logic has no place here. The mountains of knowledge banging around in my brain have absolutely no chance against the one in a million time the unexpected happened. MY baby died...

We've lost our second baby sitter in six months. Most people would say "life happens" or "it's no big deal" but to us it's enormous. Beyond enormous. These people represent my son's entire world and I fall in love with them, how can I not? The break is an vast wound that I can't reconcile. On top of that news from his immunologist that he just can't do childcare; its too risky.

I was despondent with fear and worry, for my child, for my job... my relief at the prodigious grace willingly supplied by my PhD advisor when I finally broke down and told him the situation was swiftly deflated...

He got sick. It's always terrifying when he gets sick. He had a high fever, on a weekend, naturally. He was diagnosed with an ear infection and given (more) antibiotics. All in all I think I handled it pretty well. I was scared but didn't completely freak out. Then after a day completely fever free it came back. This is the thing they tell you to freak out about... this isn't normal... this isn't supposed to happen. His doctor was out of town and sent us to Urgent Care. His daddy has been sicker than I've ever seen him in the midst of so much turmoil and just couldn't go with me. I went alone. The Urgent Care PA treated me like I was making things up, or perhaps just stupid.

"It's just a virus"

I was told those exact words two days before Damon died...

I was dismissed with the same damn diagnosis that is handed out like candy on Halloween to every single kid for whom another cause for fever is not apparent.

Forget the fact that the child is IMMUNE DEFICIENT, or that research has demonstrated that a normal WBC (which he had) doesn't rule out infection in SEVENTEEN PERCENT of cases, or that the last time this happened he had occult pneumonia which is only diagnosable with X-ray, or that I happen to be a highly educated scientist and HIS MOTHER. She didn't ask, she didn't care, and this is exactly the kind of dismissive bull shit that killed my child.

We celebrated this morning when he woke up without a fever and were crushed when an hour ago it was back.

So back to tired, sad, and feeling quite sorry for myself... (and apparently pissed... pretty damn pissed)

I tell myself a lot not to feel sorry for myself but I am and I do. I feel defeated as if whomever runs the universe feels some kind of offense at my rising after each beating and is damn determined to see me bleed.

So here I am, holding my breath... as always it seems and, in case you didn't catch it, feeling quite sorry for myself.

Until next time...

My children

First of all this short on empathy... is pretty perfect. I've already posted it on my FB page but, you know, a second look-see wont hurt anyone.

So... life, right?

Have any of you noticed how unbelievably hard it is to keep putting one foot in front of the other? If you haven't I pretty much hate you. I should say "I'm so happy that you haven't faced the kinds of pain blah blah blah..." And, ok, I wouldn't wish this kind of agony on ANYONE, EVER, NEVER EVER.

Ever

But seriously... if you are one of those sunshine and roses people.

I hate you.

And if you're that happy you can take it. So there.


Moving on.

I've gotten pretty good at partitioning. Apparently men do this naturally. If you need a funny five minute break from my ever sunny disposition you can find a video about men's boxes here.

Hi, welcome back. I was talking about partitioning. I've gotten pretty good at it. Apparently in my case its called PTSD. I take the reality that my son died in front of me and I put that white hot searing memory deep deep in my mind. I close and lock the doors to that box, wrap chains around the openings, and run. I run hard and fast and for as long as I possibly can. While I'm running I do things like research, parent, go out to dinner, have conversations... all while running screaming inside my head.

Partitioning.

I can usually feel it when the heat of that pressure cooker is about to blow. There's only so much repressed pain my mind can take. I get snappy and restless and more forgetful than usual. Instead of forgetting really complicated and unusual words like "TV" (yes, its happened) once or twice a week it starts happening once or twice a day. Then I crash. I cry and cry and cry until I can't breathe or think anymore and I hibernate for as long as I possibly can.

Those times are brutal.

But, in my busy little partitioning way I'd managed to persuade myself that I was managing better. My lies to the world convinced me to let my guard down... It's been weeks since your last crash. You're busy, you're getting stuff done, you're doing ok.

Then, I have a moment when that searing box of agony is opened by someone else. A time when I have to confront something for which there are no words, unprepared.

Today, I sat in a small room, pulling tissues out of a box shaped like a schoolhouse listening to the deep, profound ways that my eldest child is wounded by his brother's death. And suddenly all the lies, all the chains, all the walls I've thrown up are seared to ash and it's just me, naked in the inferno.

My children...

Will it never end?

Is it?

I've been extra messy lately. The pain is welling up and running over and I never know what to do with it.

Sometimes when I'm like this I end up at Hobby Lobby wondering aimlessly through the isles. 

I often see things like this.

I feel as if the jagged, rusted shard of a past life that resides in my chest gets twisted every time. I've never said anything before. I don't want to debate God, or religion, or anything really... But this hurts. 

I did believe. I believed.

Anti

I've decided that I'm anti...

I'm anti posed perfection.

I'm anti cleaning my house because company is coming.

I'm anti fake smiles (but all about the real ones).

I'm anti BS.

So here's some reality. This is my living room this evening. It's a wreck. It's pretty much always a wreck. There is nothing wrong with that. I'm not going to clean it before I go to bed tonight. I'm not going to apologize to you if you come over and it's a wreck and that's ok.

Here's to anti-pretending I have it together and anti-trying to make myself feel better by competing (because that's really what it is)

Here's to anti...

fear...

There's a C.S. Lewis quote that I've probably posted here many many times. In it he says that no one told him grief felt so much like fear.

There is so much fear.

It occurred to me last night that the ever present pain now has a close companion. Fear, fear, and more fear...

There are the fears you probably expect.

When I rock my rainbow before bed it always takes many minutes of talking myself into laying him down because of the fear that he wont wake up. When he wonders into another room and I realize that he is quiet my heart screams every step to find him because I fear that something horrible will have happened. Every four months when the blood work comes back I fear the worst. I fear that his body will start losing a battle with the world...

There are those fears, then there are these:

I fear conversation. I fear small talk and "how are you?" I fear being alone because it is then that the darkness can find me but I fear being with people because I can't fake it like I used to. I fear losing yet another friend because I am just too much to handle. I fear people's unconsidered, thoughtless, or judgmental words... because they hurt like hell. I fear those many, many moments when the words just wont come, when I can't remember why I am where I am, or what the names of things are. I fear being perceived as a jerk because I just can't operate in the world like you can. I fear the panic attacks, the helplessness, the ever crashing waves. I am terrified to celebrate that my rainbow has turned TWO because what if that is the end? What if whatever force or being that runs the world notices that he is growing, and loved, and helping to heal his broken parents?

My world is entirely ruled by fear and I have no idea what to do about it.
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I know no other thing to say but to ask again that you, who allow this kind of pain and confusion into your life when you read my words, be kind because everyone you meet is fighting a hard battle.

I hurt... I fear... I hurt...

Until next time...

I carry him...

In one of my classes we are studying the endocrinology of development, specifically what hormones are involved in sexual differentiation. As part of our assigned reading we read an article about many of the ways a person can be an intermediate between the sexes. One of the things we read about is called a michrochimera.

Turns out that during gestation fetal stem cells cross the placenta into the maternal circulation and that these cells incorporate themselves into the maternal system. The fetal cells have been detected, living and functioning, in a woman as old as 94.

When I read this I was in scientist mode and my mind went off on a tangent about how that could work... biologically speaking. I mean seriously, HOW does that work. Cells that are genetically different from the body are working as part of the body. Cool.

Today, while I was sitting in class, my instructor said "So a mother carries cells from every fetus she has ever carried." and I lost it.

It hit me.

I carry him with me.

I LITERALLY carry him with me, physically.

Nothing will every make Damon's death better, or ok, or his absence any less agonizing but I am holding on to this with everything I have.

I carry him...