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.

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...

Every Second, Every Minute, Every Day

I miss you

mediocre

So, I have PTSD... ya'll knew that... I knew that

I had a full on panic attack on Friday but that's the first I've had in months. I can go to the grocery store and restaurants (I even order for myself now). I can even do that really horrible "how are you?" "Fine, you?" bull crap now. (Though today someone asked how I'm doing and I said "shitty" and they didn't know what to say for a full minute... I guess sometimes I can't do it). Long ramble short, I've come a long way back into society. I think I was starting to believe that I'm functioning pretty close to "normally."

I've always had to work hard to learn. I'm not a hear it once, got it kind of kid (my hubby is). Knowledge is hard won for me but I've always functioned really naturally in an academic environment. This is the first semester since I've come back to school that I've had a truly full plate. I'm teaching, taking classes, and researching... and its kicking my butt.

I'm not new to this either. I was a single parent through much of my master's work. I put in nearly a full year on my PhD before Damon's death. Sure, it was hard but I rarely felt like I just couldn't hack it.

My brain is broken.

I was told by a few therapists before I gave up on the whole therapy thing that my mind is fractured. Because I can't deal with my memories of Damon's death I've partitioned it off, thrown up iron walls surrounded by a moat filled with crocodiles... you get the picture... and that this dividing of my mind prevents it from working correctly. I believe them. I believed them then. Believing them doesn't make me any more likely to walk back into those memories, but I believe.

I believed them because of the panic attacks, the incessant crying, the constant fear, the all consuming ever-present hurt.

But only in the past few months have I started to realize that the damage is not only emotional.

I regularly forget words, as in five or six times in a day, words like "door" and "computer" not to mention "argenine vassopressin" or "dompamenergic neuron." Everyday. I can't remember where I parked my car and perhaps most frightening of all to an academic, I cannot incorporate new information. I can learn it but I can't get it to sink down into me. It just sits there on the surface, tickling my mind when I try to go find it.

So I'm asking myself the question... can I deal with being mediocre? Can I accept average (really below average for a PhD). If I face the fact that I simply am not the person that I was in all ways, including my intelligence and capability, what does that mean? Can I still do this?

I don't know.

Until next time...

So sensitive..

Don't be so sensitive

Let it roll off of your back

Get a thicker skin...

The last is my (least)favorite.

I have no skin. I walk through the word with virtually no emotional armor or resilience. If you take me down you take me down for days.

I feel every word. I feel every look, every snarl, every slight.

It hurts.

People often tell those of us who walk through the world emotionally vulnerable to be "thicker skinned." It's possible to develop thicker skin, as in your real physiological body covering skin. You can do it. On parts of your body that are exposed to constant wear the skin will thicken... As it thickens you lose some of the sensation, you lose a great deal of the flexibility, the color changes. In the end it looks and feels nothing like the original skin. It is protective. It serves its purpose well.

I honestly don't know if I could do this emotionally or not. I know there are people who have. There are people who, in self preservation, have thickened. They have lost much of their ability to feel. In the process they have become very inflexible and, perhaps, to those who knew them before, unrecognizable. You probably know them, too.

Sometimes I really really wish I were thicker. EVERYTHING hurts. People are angry and opinionated and mean. Speaking about things people don't want to hear makes me a target.


But... some people are genuine and kind and honest.

Some people entrust me with their truth... their own deep hurt

Some people sacrifice their time and energy to raise money for Damon's Dance

Some people never forget, never stop, ever offer their support


If I grew that thicker skin, built that wall of armor that protects me from the mean and angry and opinionated would I still cry out of an overwhelming gratitude to the amazing women who organized a Damon's Dance fundraiser? Would I still be a person my friends can trust with their hearts? Would I still be able to feel it when people purposely poor their love and affection into me? Would I be closer or further from the woman, wife, mother that I want to be?


It sucks to be so sensitive. I really sucks to be a deeply sensitive woman trapped in a body with a very, overly, obnoxiously honest one... seriously. But even if I could turn it off (and I don't think I can) I don't think I would be willing to accept what that would do to the rest of me.

Much like grief, sensitivity is not an illness. It is not something that needs to be changed. It is not a weakness any more than aching for a child I will never hold again is a weakness. It just is.

Until next time...

The one where I call some people out...

I spend a lot of time working in places like Panera... I'm pretty niche-y about where my brain works.

I hear a lot of conversations about church, god, faith... etc.

These conversations have stimulated a lot of thought and a lot of pain. I'm trying to decide if I have the courage to publish my rather extensive and, honestly, quite critical thoughts as I've been writing them for the past year or so. I haven't decided yet.

Quite frankly I don't know if I can emotionally withstand the potential backlash. Ya'll all know I'm barely holding it together as is.

But I will say this:

No one, I repeat, NO ONE wants to be your mission.

We are people.

The bereaved.

The broken.

The addicted.

The atheist.

The agnostic.

The angry.

The wounded.

The smelly.

We. Are. People.

We are not your project. We are not your obligation.

Wanna hurt someone? Make them your "mission."

Enough said.

Until next time...

Facetiming Rainbows

The Rainbow baby has discovered facetime...

I don't even know where to start here so I guess I'll just go all brain diarrhea on you and hope it makes sense.

I honestly don't even remember the first time he facetimed but clearly it made an impression. Yesterday He brought my phone to me chanting "Papa... Papa... PAPA!!!" at least twenty times. He wants to call his Papa Bear (his name is Barry... you get it). We called Papa and Grams, who dutifully answered and tried mightily to have a conversation with an almost two year old who mostly giggled, said "Papa!" and "Bye!" He was so persistent I asked them to make videos of themselves talking to him. They did and he watched them at least thirty times each. He also insisted we call his Aunt Angi, by name (genius baby).

We tried to get a video of him watching the videos and talking to them (because we're modern parents) but he has some sort of 6th baby sense and stops doing anything adorable or video-worthy the second any recording device is activated. Seriously, how does he know?

Today I thought the videos would satisfy his facetime obsession. It was not to be. He got into my facetime app on his own (again, my baby is a genius) and started with the chanting "Papa!" We facetimed with his Papa! and Grams twice today and only because I started hiding my phone.

So... if you are in my contacts and you start getting random facetime requests if you answer you will likely find an absolutely adorable baby staring back at you, maybe asking for his Papa! or maybe just saying "Hi-eeeee" and "bye!" repeatedly with no intention of actually hanging up.

This has been the highlight of my weekend truth be told.

We're starting hell month and things will get really dark. I'm so glad that my rainbow is such a bright fire inside me.

Until next time...

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...