Thank You

I hear a lot about gratitude.

"Just be grateful that..."

"Gratitude is the key to happiness."

I went through a long dark season where I was not about to be grateful for anything, period. My entire life gratitude had been so tightly tied to religion. I should be grateful for my existence. I should be grateful for grace. I should be grateful I wasn't incinerated on the spot for the horrible horribleness that was me.

After Damon's death I was NOT grateful for my existence, much less anything else. Every breath was razor blades.

It feels like every step since has been taken in quickly drying cement. I don't know what cosmic force I royally pissed off but this is just ridiculous. If there is a god I am definitely not grateful to him/her/it whatever.

But...

I have learned that gratitude is a beautiful, healing thing. A few months ago I started concentrating on true gratitude. What was I really deeply so very very glad for? It started on a drive home from school. I pulled into my driveway, looked at my burnt flesh colored fixer upper and was so so glad that this was my little corner of happy. Hubby and I worked hard to buy this little house. It is my favorite place in all of the world. Here is my sanctuary. Here reside all I hold dear. I sat in the driveway and dwelt on that feeling and some of the ever-present black lifted from my soul.

Gratitude, the real thing, the simple look-around-bask-in-what-I-love thing, is beautiful.

So, that crazy long introduction was to say this I am unbelievably, inexpressibly grateful for you.

Most of the time we feel very very alone. There are so many things that keep us apart. We are bereaved parents. We see the world in an entirely different way. We feel everything so intimately. Our values have shifted. What we will tolerate has changed. Our ability to be part of a social fabric is seriously frayed. My entire belief system has turned on its head. We are changed people. Our eldest child suffers with us and needs so much protection and now we know our rainbow is a zebra. We become further isolated from the world. Even if we were emotionally capable we couldn't socialize.

We. Are. Exhausted.

And then, there is you.

There is you who sends packages of hand sanitizer, and Mickey Mouse masks, and Amazon gift cards, and checks for money you could have used on christmas presents or home improvements or a million other things but you gave it to us.

For a wordsmith I fail so intensely at expressing what your gifts of love do to me.

It is like each one is a brilliant firework in the darkness of our lives. Just like the spirits of the crowds are lifted with each beautiful display of blues and reds and whites your kindness shreds the darkness with ravishing fireworks that spell "care" and "love" and "not alone."

Not alone...

I feel like our culture tells us that it isn't ok to need... anything. We despise the weak, the needy. I'm long long since past pretending like I wont accept help, like I don't desperately need support in any way you are willing to give it. And something really amazing has come from that. There are people... there is you... who really, genuinely want to help. Not because of some moral obligation or religious requirement but just because of who you are. That discovery, that network of beautiful souls, is precious to me.

And I am indescribably grateful for your love.

Until next time...

Zebras

Damon had a large zebra wall sticker in his room next to his crib. He would wake from a nap and say "Zeea!!" I would walk in and he would be standing there at the very end of his crib excitedly pointing at the Zeea.

We kept that zebra. It hangs in our hall just outside of Rainbow's room. Every single time I look at it the image of Damon standing on his little tip toes, alight with excitement floats to the forefront of my mind. It hurts like hell... every time. But I wont take it down for anything.

Rainbow baby took a shine to that zebra too. As we exit his room he usually insists on touching it. It's a little post-nap ritual. He can say zebra perfectly now. Sometimes he wants
to just stay there in my arms for a few breaths and stare at it. It's like he knows that there is something there, some connection. It hurts like hell... every time. But I wont take it down for anything.

Today I found out that individuals with Rainbow's condition are called "Zebras" because medical students are taught "if it walks like a horse and talks like a horse think horse... not zebra." Well, in the case of immune deficiencies what you are actually looking at is a (expletive) zebra. Treating a zebra like a horse is (expletive) deadly... but I digress.

So, what we in-fact have is the very rare rainbow zebra. I feel a new tattoo coming on ;)

F.O.U.R letters

I've been sitting here staring at this screen hoping something with bubble out of me. That's how it works... but there's only one word coming to mind and it has four letters.

Maybe I'm not ready to write about this yet. Maybe writing isn't my release anymore.

Maybe the layers and layers of fear and pain are crushing the words.

Or... I just don't want it to be real.



Our rainbow baby is sicker than we knew... or he's gotten worse....

Since he was about ten months old every three months we've checked his immune function. We use to monitor a whole host of things but over time it has come down to three measures. IgG, IgM, and IgA. These are the immunoglobulins, what most people think of as antibodies. These are your primary adaptive immune protection. They are what "learn" from infections and vaccines and build a pathogen specific response so they can kill pathogens before pathogens can kill you.

Since that first measure his numbers have been low, but not red alert low. So, he's been on antibiotics (yes all of the time) and has been rushed to the hospital with nearly every fever. He can't be in childcare. He can't go play with other kids. He washes his hands ten times a day and gets every surface he touches wiped down with antibiotic wipes that are stuffed into every cranny of our lives.

I have a memory box full of dated cards where I record all sorts of things my boys do, funny things they say, first tooth, first basketball goal, etc. I have recorded the day he had his first normal childhood illness and didn't have to go to the hospital.

I had just started to loosen my grip a bit and took him to our local children's museum... he loved it. He loves kids. He loves to go.

Thursday we found out that his immunoglobulin levels, all three of them, are red alert low.

People say that hope is a beautiful, life-giving thing. I realized in that moment on Thursday that I had been hoping that we were just being overly cautious. That his immune system would "catch up," that maybe this is just because he was premature, maybe, maybe... maybe.

In my world, hope is just painful.

Now we know. He is truly immune deficient. His immune system cannot protect him. It can't protect him from everyday life.

For the forseeable future he will have to endure monthly infusions of purified gamma globulins. We will be giving him "troops", taken from thousands of blood donors, equipped from exposures to millions of pathogens. He will have to sit for 5-6 hours with a needle in his arm. My incredible, funny, kind, silly two year old...

I know that we will all adjust. We will all learn this new "normal." Though I don't think normal is a word that can be appropriately used in reference to our battle-worn family.

This weekend I am grieving the hope that I held for some semblance of normal, for some break from the onslaught. My fear and pain for my rainbow draw me deep under the waves of the grief that forever lap at my ankles.

 I know enough about genetics and immunity to know it is no coincidence that I have an immune deficient child and a child that died of an infection against which he was vaccinated.

So. Much. Guilt.

So. Much. Fear.

So. Much. Pain.

I am so tired.

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.