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...

Somedays look like this (for you Cara)

Yesterday I had lunch with a friend (imagine Disney World as a person and you've got her, except with the biggest friggn heart you've ever encountered... yeah, then you've got her) . She told me she was happy to see my post about our five stockings because "at least for a second there was something good."

I've often thought that I should tell you guys about the good stuff, too. The thing is I only feel compelled to write when I'm overwhelmed with the hurt, when I have to get it out of me. Also, I kind of tend to forget that someone actually reads this...

Anyhoo, with that thought in mind yesterday I went on a photography bender to give you a glimpse of some silly, goofy, messiness. Sometimes the days look like this...

My eldest making cookies "I can do it mom." Notice him reading the recipe... Like are you serious? That's off the charts adorable. The picture to the right is the icing. I said "Ok, babe, how much powdered sugar do we need?" He looked at the page and said "Two pounds." We have a lot of icing if you need to frost some cookies... or a house.

Meanwhile, this happened... Rainbows 

This is my man just after he told me that it's ok that the dogs love him more because the baby loves me more (which is not true but he is kind of completely and over the top a mama's boy... just kind of). You may have noticed the stylish blue diaper the little white dog is sporting (her name is Popcorn, in case you care). Yeah... she's incontinent. Seriously? Yes, our little while snuggle pup is actually a 70 year old little old lady who has had 15 kids. Maybe in her past life. We spend half our day chasing after her to pull that stupid thing up. I ordered doggie diaper suspenders and being an adult is stupid.

Did I mention she's a snuggle pup? It almost makes me forgive her for peeing on EVERYTHING. Almost

This.

And this. This picture makes every molecule in my body smile. What you can't see is that two seconds before I snapped this he was crouched down behind our great big scary pit bull and he had just popped up and squealed at his daddy. He's very pleased with himself, can't you tell?

The big boy and I had our first ever mother-son Pinterest fail. Nailed It! "They look like watermelons mom" 

Shortly after this picture my man and I had a giggle fit in the kitchen over something ridiculous I said with the eldest looking on as if we had utterly lost our minds. It involved being tickled with crabs but I think you had to be there.

Me making swooning noises and googly eyes. I'm stupid crazy about my man.

And at long last... This.

The real treat was when the hubby crawled into that bed with me and we talked for two sold hours. Some days, we don't talk. Some days are too hard, too painful, the black is too thick but...

Somedays are like this.

Until next time...

Five

This year we are "doing" Christmas... sort of.

Our awesome little fixer upper sits nestled in an older neighborhood alight with twinkle lights, icicle lights, reindeer, snowmen... you get the picture. Our new neighbors dig Christmas. A few weeks ago I turned the corner coming home and realized that I didn't loathe the lights, didn't hate the stupid snowmen. It was actually kind of ok.

We hung lights, net lights, icicle lights, even those crazy colorful lights that could give people seizures. We had plenty from another life, the life when I was one of those crazy Christmas people. This season couldn't come soon enough or last long enough. The hubby made a "no Christmas tree before Thanksgiving" rule because I would have pulled a Hobby Lobby otherwise. LOVED IT.

I don't love it anymore.

There is a reason the suicide rate is the highest during the holidays. This is the time when we celebrate. We bring our families together. We count our damn blessings. We have tree decorating parties and memories and babies in footie PJs squealing with delight.

Except those of us who don't.

My oldest remembers before. He remembers the hot cocoa, the Christmas music, the traditions. He remembers. His heart doesn't bleed with every memory like ours. He wants these things. He deserves these things.

I cant bring myself to play Christmas music or to make a big deal out of decorating the tree. The memory of the last time rips and twists in my heart. I can't. Maybe someday I will but not now. I bought a new tree. I couldn't put up the one that Damon pulled down, permanently making it katywompus. I couldn't pull out the old ornaments. I couldn't open the box that holds his "baby's first Christmas" hat even though I can tell you exactly where it is, exactly what the hat looks like. It's too much. I bought new ornaments. I couldn't find orange ones so I converted silver ones with orange glitter. The rainbow baby has already attempted eating most of them, they are scratched and squished and bent. Somehow that feels better.

"Mommy, can we please have stockings this year?" My oldest asked a few weeks ago.

This is the one I most dreaded. I have to make a decision. Will I hang four stockings or five? Do I not hang a stocking for my dead baby or do I hang a stocking that will scream its emptiness at me for the next month?

Five, we hung five.

It hurts. I hurt. Everything hurts.

Until next time...

19 months and 5 days

I didn't realize what a big deal it would be when my rainbow turned one day older than Damon. One day beyond the span of his elder brother's life. I didn't even realize that I knew to the day when that would be.

I did. I knew.

From the moment he turned 19 months old my anxiety ratcheted up about a million points. I just knew that he would disappear.

Last night I kept staring at him in the bath. Just staring. I rocked him before bed breathing in the scent of him, so completely overwhelmed with the weight of him in my arms. He did everything exactly as he does every night. He took a bath, just like every night. He played and read a book, just like every night. He said "Good night daddy. I love you!"(or I did and he grinned) and waved just like every night. He had milk, then snuggled down into my arms until it was time to belly sleep. I laid him in his crib and he slept all night. This morning I walked in his room (at 6:00 am) and said good morning, just like I always do...

I can't communicate how profound this is. I'm dumbfounded. I'm speechless. Im overwhelmed by the tangle of joy and agony.

From yesterday on everything is different. It's different.

I'd like to say that now I will take a breath, that I will chill out, that I wont be terrified every second for my rainbow but I am and I will be, always. Just as I will always be shattered.

I saw I post the other day about how an apology doesn't repair brokenness. It said something like:

Go get a bowl. Throw it on the floor. Did it break? Ok, now apologize to the bowl. Is it unbroken?

The point is pretty obvious but I think the analogy applies to child death. You can put a broken bowl back together but no matter how well you do it, no matter how well it functions, the bowl is never the same. No matter how much you fill it with delicious food there are still pieces missing, however invisible.

In many ways my life and my heart are very full but there will always be a piece missing and I will never be the same.

Here's to 19 months and 5 days.

Until next time...

A sick rainbow and kindness confetti

Come to find out I'm pretty superstitious. I knock on wood. I touch a screw (if I can find one) when I go over railroad tracks. I freak out a little when someone "jinxes" me. And I hold my breath and don't write about my rainbow baby's health. It's like I'm afraid that if I point him out to the universe the universe will take notice. I don't know, maybe I'm just too terrified to actually write the words, here, in this place where I come to think...

My rainbow is sick.

It's a long, complicated, confusing road to where we are. Essentially, there are multiple components of his immune system that are either deficient or missing.

Terror

Abject Terror

Every day, every breath, every minute

Terror

If he was perfectly healthy I would live in terror. He's not. I know he's not. I know his immune system isn't fully equipped to fight pathogens.

Terror

We've been running the gauntlet of test after test after retest. Our plan of action has been to watch him like a hawk and rush him to his pediatrician if he does anything weird, and rush like we're in NASCAR if he has a fever. We've had to do this twice, both times were during regular business hours. His pediatrician always sees him immediately. One time he had an ear infection. The other it was "just a virus."

Monday it happened in the evening. We had to go to the ER. He had to suffer through a battery of tests (for which I am so very grateful) and once again it's "just a virus."

Those words are like acid. Those words "just a virus" are the words that sent Damon home...

I was D-O-N-E waiting. I was done putting my child through test after test after test. I was done wondering if the next time he was sent home he would die.

I had his medical records sent to every hospital I could think to send them to. He has an appointment at The Mayo Clinic now. I'm not sure if the rapidity with which they got him in is terrifying or encouraging but we're in. Elation!

Annnndddd now we have to figure out how to get there, and where to stay, and and and...

Aint that just life?

Already friends have offered us their home for as long as we need. Someone just gave us a hunk of money to help with travel expenses. Like, here you go, my heart is bigger than Texas, you can have this.

What?? Who does that? Doesn't that only happen in movies?

There are no words for times like these. There are no words for people like these. Who does that?

That kindness I've been begging for is being poured out all over me at a time when I couldn't need it more.

I'm holding my breath, knocking on wood, crossing my fingers and toes and hoping against hope that soon we will have answers.

Your kindness. It isn't a small thing. It isn't unimportant or unnoticed. It is huge. It is everything.

Thank you...

Kindness confetti

Grief really really really screws with you.

Probably not you, maybe not even most of the bereaved, but me it really really really screws with me. I've known that I'm confused. That I'm lost. That there is no gravity. I've known that I've lost most of the people I thought were friends, my culture, and my faith. Until yesterday I didn't realize that I have also lost my identity. Not really. Not in that "oh god, I don't know who I am. I really don't know who I am." way.

This is fresh.

I realized yesterday that I have no confidence in me. I have no confidence in my decisions, my abilities, my opinions... none. I look for confirmation from someone for everything and I almost never make a choice that is counter to the opinions of others. I need my husband to tell me if I should buy the expensive detergent or the cheap detergent because he's so frugal and what if he gets mad that I bought the expensive stuff (which he would never do) even though I know both of my boys have sensitive skin and really the only choice is the expensive stuff. If you read that whole sentence as fast as possible in a frantic tone you've spent a few seconds in my mind. Criticism of any sort can send me to the black where I crawl into anger and hide from the fear and the pain.

I've read that depression in anger repressed. While I think this is another example of misunderstanding the depth and breadth of depression I think it is partially true. And I think anger is often pain's prison guard. Anger feels protective, but every time I crawl into that cocoon that allows me to run from the agony it's acid eats away at my raw, exposed, wounded body.

I hear a great deal of criticism about those who "destroy their lives" after a child dies. They drink, they sleep around, they lose them selves in this high or that, they become "so jaded," or unapproachably angry...

Sometimes it is so much easier to lock yourself in a prison of your own making than to face the loss, to walk through a cruel world with no protective layer, to endure the missing, to nearly drown in your own self doubt, to be so lonely and so afraid of people. It is easier to run and run and run and never stop than to face the agony that lives inside.

I think the fight, really the fight for everyone, is to stay. To stay in the moment. To stay in the conversation. To hear. To believe. To feel. To not justify the suffering of others, no matter what the circumstances. To not comfort ourselves with platitudes and judgements. To remain present.

My next step is figuring out how to trust myself again. To believe and claim that I am capable of, well, anything. To remember that 99% of other people's behavior is about them, not me, an to figure out who me is so I can be her.

We are all together too dismissive, too unkind, to busy, and way too damn judgmental.

I need kindness like I need air. I am a wounded, floundering, fearful woman. I need kindness.

There's a foundation for bereaved parents called MISSfoundation. Every year they have an international kindness day (or maybe it's a week I'm not sure). They put out a challenge for all of their members to do something kind. To go out of their way to be kind. To be kind to everyone in their path. To just throw kindness around like confetti. I've been so narcissistic lately I've thoroughly and unbelievably sucked at this. I've been much less than kind. Everything hurts!

I'm challenging myself. I'm reinventing Jodie. I don't know who I am so I need to figure out who I want to be. I want to be kind. I know this one thing so this one thing I will focus on until I figure out the next one thing.

Today, or tomorrow, or this week when you read this do something stupidly kind then tell me about it in the comments. I need this. I need your kindness. Let's throw kindness around like confetti.

Until next time...

Guilt

Guilt and I go together like me and a soul sucking parasite. Always, always, guilt.

Lately it's that I've gone back to school, which means I work a lot. I'm gone. I don't get to put my baby down for every nap, he stays with someone else a good chunk of every week day. I don't get to go on Isaiah's field trip or pick him up from school. I hate myself for it. They both freak out every time I leave the house. I'm failing. I'm failing at the one job that matters.

Guilt.

I tell myself to lay off myself. Being a PhD student may be a crap ton of work but it comes with a good amount of flexibility. I do all of my work that doesn't require me to be in a lab or in the field from home. I'm usually physically away less than a standard job would require and I have to work so I should do what I love, right?

Myself doesn't listen. Every second of their lives that I miss feels like a part of me is being ripped away. Always in the back of my mind "this could be the last time." People will say incredibly insensitive things like"Aw, don't do that to yourself." I'm not doing this to myself but thanks for more guilt. I know. I know what it's like to review every moment you missed, every moment you were distracted and want them back more than most people have ever wanted anything, ever.

So, I cry as I drive to school everyday. I cry when my baby readily leaves my arms and snuggles into his babysitter. I cry when my eldest forgets his homework for the bazzillionth time and I wasn't there to help him remember.

My entire being is heavy with the ache of missed moments.

Until next time...

Issues

My man is rocking my baby to sleep. He just walked out of the room in his plaid PJ pants, little hand wrapped around his daddy's finger, waving "night night." This moment, this mix of deep contentment and tearing agony, is becoming increasingly familiar.

A few nights ago the four of us spent hours playing in chocolate and caramel, eating way more than was advisable, making bake sale items for the eldest's school. It was the topper to a pretty great day, all things considered. After we got the kids in bed Will and I huddled on the couch and cried. We ache for out little blue eyed dancing baby, every minute, every day.

I had a very honest conversation with a new friend a few days ago. Once I convinced her that I was not on the verge of taking my life, just being a great deal more honest than most people ever see, I told her that I was surprised that she was so willing to talk with me about Damon, about pain, about how I am "still" not ok, ever. Most people avoid either me, or my pain, with everything they have. She responded "People don't want to believe something like that can happen." It's true, but it does. It happens every day. Even more so I think people don't want to believe it never heals, but it doesn't, not ever.

It seems that we are told, and we tell others, that we should not need each other, that we should not need other's approval or permission to be... whatever or wherever we are. I don't think that is true. I think it would be nice but it is utterly unrealistic. We need each other. This person said something to be in complete honesty that has repeated itself over and over and over. She said "with what you have been through I can't imagine not questioning everything." She is a devout believer but she didn't gasp in horror when she learned that I'm fast finding faith more and more untenable. She didn't lecture me either and most unusual, she didn't turn away and decide that she doesn't want me in her life. She just said ok.

In the course of this conversation she pointed out to me that I have completely shut myself down. I've stopped searching, stopped exploring, stopped researching. She is right, I have. I've shut myself down. I've done this partially out of exhaustion. It takes so much energy just to move, just to swim against the tide of pain, depression, and loss that often all I can do is breathe. But I think the deepest reason I stopped is because I was afraid. I am afraid. I'm afraid of where my exploration is leading. I've already lost so much, what if I reach certainty? What if I can't find any handholds in faith. What if everything I've believed my whole life is a lie? This is where I'm headed, fast.

But... crouching on the floor in fear wont make it stop. It wont make my life go back to the happiness and peace of two and a half years ago. I have to find the courage to keep exploring... no matter where it leads.

This new friend, this believer, gave me room to do that.

So, I guess this leads to my first post about my "issues" with faith, or maybe this one is the faith based community. There is no place for someone who doubts. There is no place for someone who questions. There is no welcome for the cynic, the skeptic, the angry, the fearful. As I said, I don't know where this exploration will lead but if there is no place for me to work this out within a community of faith, where will I go? If the church expels (by either environment, exclusion, awkward silences, withdrawn friendships, or downright expulsion) those who are the most wounded what do you think will happen to them? Where will they turn?

We need each other... why do those of us who need the community the most end up standing on the outside?

Until next time...

I think you should know I have love handles

I've declared war.

Some time ago I came across the quote above...

As a child I never heard one woman say to me, "I love my body," not my mother, my elder sister, my best friend, no one woman has ever said, "I am so proud of my body." So I make sure to say it to Mia, because a positive physical outlook has to start at an early age.

It took my breath away, made me feel dizzy... not because I'm at all surprised by what she said. It gave me that someone just punched me in the stomach feeling because, suddenly, I realized something.

The only thing... The ONLY thing that tells me my body is anything less than beautiful is my culture.

Is that a epiphany for anyone else?

Think about that for a minute...

Media, culture, popular standards... whatever you want to call it... has decided that I should weigh 20 pounds below where my body says it's comfortable, has told me that nothing should jiggle, has determined that my breasts should be large and my waist impossibly tiny, that love handles should be starved or lazered away... I could go on but you get the point.

Here's my realization... I bought it. Oh my god I bought it!!

I bought it for 33 years!!!! What. On. Earth?

For as long as I can remember virtually every spare thought has been spent on criticizing my body. Every time I look in the mirror my eyes focus in on every single perceived flaw. EVERY TIME. I'm downright brutal to myself.

Why in hell did I accept that this was ok?

I trust my husband, adore him, believe him... about everything else. He regularly has those movie moments where I catch him staring and he says "you're so hott." Instead of just enjoying the glow and basking in him I contradict him, almost every time.

WHY?!

Why do I trust this man in every conceivable way but I don't trust him when he speaks love and affection and longing over me?

Why when someone complements me do I feel that the normal societal reaction is to tell them that I have love handles? Really? Really? Why do we do this? Why do we feel like we have no right to love ourselves?

I'm declaring war on my negative self image, on my unwillingness to see my own beauty, on our culture's insistence that we aren't allowed to think we're pretty damn awesome.

About a week ago I started purposefully reversing my internal dialogue. Now when I stand in front of a mirror I pick out the things I like, and take in the things my husband likes. It sounds hokey but you know what? It works...

Until next time

Hospital = Hell

I don't even know how to start... but I know I have to get this out of me. I can't think, every noise seems like it's boring into my skull. I want to hide away in the dark. I can't think...

Today I had to load my rainbow baby up in his carseat and drive an hour south to the hospital where Damon died. The one place on earth that I never ever wanted to see again, ever. Anytime we drove through the city, went somewhere in the city, anything about the city I would hold my breath and hope with everything I had that we wouldn't have to pass it, wouldn't have to see it much less carry my child INTO IT. Hell.

Our little rainbow has been sick. His temperature remains consistently elevated and jumps into a true fever 3-4 times a month. Something most parents would probably just "keep an eye on." We don't keep an eye on... we kept an eye on and Damon died. Two days before he died he was playing at the park. We don't take chances. We don't go for "he looks good, he's playing and eating."

Yeah... do the test.

We went to see a pediatric diagnostician. I didn't know if we would have to walk into the hospital. I asked where the office was. She told me something like the offices were attached to the hospital. I couldn't choke out anymore questions. I was to afraid to ask. Would knowing I'm going to have to walk through those doors make having to do it any easier? Nope.

Honestly, I wasn't even sure if I would remember anything about the place. There are massive black holes in my memory of Damon's last hours. For a very long time it was all black. The only time I remembered was in terrifying flashbacks that I couldn't control, or in nightmares that were skewed depictions of what was. Slowly over the past year memories have come to me as memories, not the pensieve-like immersions of PTSD. They hurt like hell but I have some control over them and I do absolutely everything in my power to shove them away.

I. can't. deal.

I wondered the whole drive if we were taking the same route the ambulance took. We pulled into the parking area and I recognized everything. EVERYTHING. We walked into the lobby and I remembered everything. I remembered Will and I walking under the soaring ceilings holding the last imprints of our child's hands, just staring at them through the fog of pain and disbelief. I remembered.

Hell.

I remembered and I cried. I cried all the way up the elevator. My head started to swirl and the black started to close in. I couldn't think, I couldn't breathe. Will handed me my rainbow and I could breathe. I could breathe enough to answer the receptionists questions, even if I was getting weird looks.

I had to explain why I was crying. "Oh, mom, are you a worrier?" Damn straight I'm a worrier.

They poked and prodded and X-rayed and examined my baby today. I kept expecting them to declare that he must be admitted, to make that long horrible walk into the PICU again. I'm not sure if I took a full breath all day. I was in some sort of robotic mode. Do what needs to be done. At some point the tears stopped and I was all business. Get this done and lets get out of here. I wanted desperately to get my child out of that place... like they were going to take him away... like once one of my kids goes through those doors they will never come out.

When it was finally all over I sat on the bench outside of the sleek sliding doors watching people walk in and out, clinging desperately to my little rainbow, and wondered if someone was making that horrifying decision to turn off the machines, if someone was walking those halls in pure agony, if someone was on their face in that little hospital chapel begging a deaf god for healing. Everyday so many parents begin the stumbling, falling, crawling journey that I'm on. I wish it weren't so. Did someone say goodbye to their baby a few floors above me today?

As I pulled away from the curb I kept looking back at my son, desperate to take him in, desperate to see him in the car with me, to see his sweet exhausted little self breathing and there and alive. I think part of me almost expected him to disappear.

We came home and we spent the rest of the day playing in the water and the mud and the sun. I needed to just be with him. I needed to not care about anything else, to give myself permission to just be. I congratulated myself on how well I was doing. "Ok, that was brutal but you're doing ok now." After an afternoon of play I got dinner on the table and something in me just clicked off. It was as if my brain said "You've done what you needed to do to take care of your family. You're done." So here I sit, in my bed, tears sliding down my face, trying to pour the poison in my soul into the black words on this screen.

Rainbow baby is 16 months old on what would have been Damon's 4th birthday. He would have been FOUR!! It's so damn unfair...

I've been counting the days until my littlest makes in to twenty months, as if that is some magical number. If he can make it past the age when Damon died he'll be ok... Now he's sick, four months away. I'm a wreck. I'm a wreck of utter terror. I'm a tornado of clashes between logic and experience.

This is so hard and it never gets easier. I'll never be ok. I miss you Damon.

Until next time...

Fake

I'll never get use to the pain, the missing, to Damon not running around everywhere in my life. I'll also never get use to the dissociation. 

I hurt, like crazy, all of the time. That's normal for me. It's normal for me to have to live divided, because if I didn't I couldn't. It's normal for me to always feel outside, separated, and sometimes thoroughly fake.

It's August, every 30 seconds I think about my little boy who should be turning four. I constantly wonder what he would be like. He's even more on my mind than usual. 

And I have to drive a research project and get an amazing eight year old ready for third grade and spend as much time as humanly possible with my precious rainbow baby and be wife to my husband... So no one sees it. No one sees the cracks and the holes and the blood gushing from my wounds. 

It feels like I dishonor him when I smile and have normal conversations about the weather. My insides are screaming and my outsides smile. I'll never get use to the dissociation. How can a person be both alive and dead? It's a particularly torn existence. The person I present to the world is so different from the person who is bound by this pain.

I'm not even sure what's real anymore.

Until next time...

Everybody talks too much...

I few months ago I heard a story about a researcher who studies human communication. I honestly don't remember who he was or where he works or what the point of his research is but I do remember very clearly him talking about "monologuing." He explained that humans converse less and less and monologue more and more. What we call conversations are just people taking turns talking about themselves with little regard for what the other person says.

Since Damon's death I've changed in a myriad of ways. One thing that has changed some on it's own and some because I make it is the way that I communicate.

People, in my experience, have this desperate urge to say something. Usually the something that falls out of your mouth because you feel like you need to say something is pretty stupid... or insensitive... or hurtful.

I'm trying really hard to think about what my purpose is before I speak, if I speak. If my goal is to be a source of comfort what form of communication would best serve that purpose? Will words be helpful in this situation? Silence may make me hella uncomfortable but sometimes it's just not about me.

I think so often I talk to hear my own voice... particularly because no one seems to be listening. I want to be listening. I want to hear what the people I love have to say and give them room to say it.

Early in our marriage it drove me nuts how little my man talked. I had some crazy epiphany that I needed to shut up a lot more and it was amazing how much he had to say.

I find that there are very very few comforters in this world. There are very few people who don't have an agenda. It seems everyone is trying to accomplish something and when I don't meet the scheduled checkpoints I've somehow failed... or maybe they have. I want to be a person who gives others space to just be, who has no agenda, who just listens. I guess I want to be what I need.

Until next time...

Love will prevail

I'm having one of those weeks... months... times... I don't know how long it will last. One of those seasons of desperation, desperate pain and grief and fear. I tried to fight it but, as always, it took me. The world is black again and I can't breathe.

I sat on the chest that holds Damon's belongings this morning staring into space. Will walked in and started "Ok, goals for today..." took one look at my face and amended "no goals for today." 

I don't know how I would survive without the tenderness in our relationship, without his ability to perceive and willingness to forgive when the blackness descends. 

It's exhausting, living life around the unpredictability of grief. Sometimes I just want to have a "normal" day and my man is trapped under the heaviness of loss or, like today, he puts his goals for the day on hold and just lets me curl into myself.

Sometimes we aren't so patient. Those days are rough but for the most part we move carefully around each other's wounds and bruises. That, perhaps, is the only reason my descents into untempered madness are temporary. 

It's true that love is not at all as it is so often portrayed. Love is work, it is sometimes a moment to moment choice. Love makes you desperately vulnerable and I pay dearly every minute for deeply loving. Love is terrifying and irrational. 

I heard a woman speaking the other day about being transgender. She spoke about how important the love of her parents is to her successful transition, about how when she came out to her very conservative Christian 85 year old mother she started sobbing. Her mother wrapped her arms around her and said "I don't know what this is but I love you and love will prevail."

Love will prevail.

Until next time...

I liked her better

You know what sucks? I like her better. I like believing Jodie, faith-filled Jodie, praying, hoping, patient, kind... yada yada yada Jodie. I like non-cynical Jodie. I like christian Jodie. But that doesn't matter.

It doesn't matter because at the very core of christianity, at the very core of any faith, is Faith. "The substance of things hoped for, the evidence of things not seen." That's the thing it seems so many christians don't get about christianity, it's about belief. You can't prove belief. If something can be systematically supported by fact and evidence that is science, not faith. You don't have a hypothesis, you have a belief. I no longer believe. And I can't take that back...

This has been a crap week. I blew up and acted like a jerk at work today, yesterday I sat on a rock and cried in front of a bewildered field assistant then came home and laid in my husband's arms and cried until my head hurt. It's been a crap week. I feel heavy, desperately depressed, confused, unsure about the choices I'm making... lost.

I would love nothing more than to bow with my face to the floor like I've done so many times before and empty, to empty of the pain, the confusion, the fear, the depression and breathe... if only for a second. But I can't. I can't because I don't believe.

I don't believe because no matter which way I turn it the frame of my faith no longer holds a picture. I set it down, walk around it, look from every angle and all I see are disjunct pieces that just don't fit. It doesn't make sense. How did it ever make sense to me? 

I've often heard that to enjoy certain movies you must be "willing to suspend disbelief." Meaning, if you pick apart every fanciful or fictional or extreme thing about the movie the enjoyment is lost, the curtain is pulled back and all the gears are showing. I think faith is like this too. I'm no longer willing to suspend my disbelief. I'm no longer willing to accept "well, we just don't know the mind of god" (excuse me while I gag). I need evidence. I need facts. I need to understand. By definition my faith is gone whether I want it to be or not.

Until next time...

Sometimes

Sometimes every little thing is not going to be alright.

Sometimes horrible things happen and they are not because god has something better planned

Sometimes it doesn't all make sense in the end

Sometimes god doesn't answer prayer

Sometimes time just makes you better at looking like it heals all wounds

Sometimes is a lot more often than you think.

Freaking Father's Day

Our culture really only honors the happy, the ideal, the intact...

Days like freaking Father's Day always find us all tied up in knots, snippy and grumpy and short tempered. I hate Father's Day. I hate Mother's Day even more. I can't make my husband one of those cute pictures with my kids holding up letters to spell "Dad" or do handprint art or... Or anything. My man can't gather his boys around him and bask in their giggles. One is missing. One is forever and ever missing.

So, once again, as always, we baton down the hatches, turn the nose into the heart of the storm and just plain survive.

Once again I try desperately to, and fail miserably at, striking a balance between "I want to celebrate that you are an amazing father" and "We both wish we could just curl up and die today." 

Even when things are good life sucks.

I miss you Damon.

Until next time...

Acceptance?

I really hate the word acceptance. Loathe actually... I loathe the word acceptance. I loathe the whole "grief process" verbage... the continuum. Denial, anger... blah blah blah. The canning, sterilizing, simplifying, naming, categorizing of grief belittles the bereaved. I hate it. And most of all I hate acceptance. I hate what it implies... I don't accept this. I don't accept anything about this. Acceptance can f-off.

But...

I think I may, maybe, may understand what this horribly named, categorized, assigned place was supposed to mean. Therapists talk about acceptance as if it is a place of resolution, as if something has closed, come together, as if the seams of the gargantuan black hole that was ripped in your soul have closed. Nothing could be further from the truth, NOTHING.

This place that I think acceptance was meant to describe is a place of knowledge. This is a place where I know that there will never be another day when I wake up and see my son. He will never speak his first sentence. He will never say "I love you." He will never start kindergarden, high school, or college. My child has a grave. He doesn't have a preschool class, or friends, or a favorite animal. He has a grave. I know that every single day I will hurt. I will hurt in a way most people can't even fathom. I will walk outside of polite society. The smiling happy faces will always sting. I will always have to make a decision in that split second between "How many kids do you have?" and one of two deeply painful answers. I know... this is my reality. It isn't going to get better.

Is that what they call acceptance?

This isn't closure. This is hell.

Until next time...

Sappy?

I've had a few moments recently when I thought "wow, my life is awesome." and then a stabbing pain shoots through my gut and I feel like I might retch. I've discovered, in this new happiness, that the happiest moments are the most painful. I really don't think I can explain it, so I'm not going to try. It's another of the many dualities of grief.

Perhaps happiness isn't even the word for it. Synonyms for happy include words like "lighthearted," "untroubled," and "satisfied." I am none of these things. I am at times something, something perhaps undefinable because of its profound complexity but it isn't purely sad. It isn't pure agony or pure pain, which is so different.

My man was trying to come up with a word for it. "Sappy," he proposed, marrying the words sad and happy. "No," he mused "that's already a word." "Had doesn't work either" Apparently a simple melding of the two simplest words for our state of being isn't going to work. It would be nice to have a word. To be able to say "I'm ______." but I don't think it's possible. There are too many dips and folds is the tapestry of life now. Nothing is linear anymore.

Maybe I'm just deeper... deeper into grief and loss and overwhelming love. I don't know.

Until next time...

Gut punch

You never know when they will come, when you will get dropped smack onto the pavement at full speed, just when you thought that maybe you were doing ok. I found these this morning. 

It's painful in every possible way. I look at myself and I remember. I remember how he felt in my arms. I remember what happy felt like.

Damon, mommy loves you. Every day, always, I love you.

Until next time...

A quick way to make me crazy(er)

I talked to god today…

Sort of, maybe, kind of.

I’ve had a good day, a good weekend in fact. The rainbow baby is finally starting to sleep, not through the night or anything crazy like that but he’s sleeping. There is no describing the bliss of sleeping 6 straight hours when you haven’t gone more than three in over a year. So, there’s that.

The hubby and I also spent the entire weekend just being together. My man can soothe me in ways no one and nothing else can. We piddle farted in town, went out to eat, played with the baby, watched movies, and just generally enjoyed each other. My batteries have been recharged. It feels good.

This afternoon as I headed out of town to pick the eldest up from his biological dad a heavy weight settled in my chest. Back in the days of obnoxiously insistent faith I would have perceived this to be god telling me something. It meant I needed to spend time with him, that there was something that needed sorting, something I needed to give over, or just that it had been too long since I had been still with him.

I don’t have the energy for that tightness in my chest. There is so much hurt, anger, confusion swirling inside of me I absolutely cannot carry more. I just can’t. It’s frightening how fragile I am, how easily blown over by the slightest breath of wind, how easily wounded by a stray word.

For a while now when I feel this tugging and my instinct is to turn to this invisible being I once called father I’ve furiously refused. Um… no you asshole. If you are in fact real, you do not get to talk with me. I hate you. GO AWAY.

Followed by… Jodie, you’re talking to yourself. That feeling you got when you believed you turned to God was the placebo effect. Think… of course it worked. It worked because you believed it would. People heal themselves with the placebo effect for god’s sake! (no pun intended)

But today I was not up for the mental ping-pong match. I had felt pretty darn good for two whole days. There was the ever-present ache, the missing, and the daily tears but for the first time in so long I was happy.

I’m not letting you ruin this! I defiantly thought.

“Fine I’ll talk to you!” I blurted at the grey pavement as it disappeared beneath the car. And the tears started.

No, I don’t believe in god again. I don’t know that I ever decided I didn’t but whatever position I had taken hasn’t changed.

Probably isn’t real… if he is he’s an ass… if he is modern Christianity still turns my stomach… if he is he has a lot of explaining to do.

But, this is where I am. I’ve tried so hard to be honest. To document this painful journey and today I talked to god… or myself… or the highway. I’m not sure which.

Until next time…

An odd place for comfort

Oh god... I'm an athiest

My baby died two years ago, suddenly, completely unexpectedly at 19 months old. 

I laid on the floor of his PICU room, on my face, and begged, begged God.

I had what anyone would have characterized as a strong relationship with God. I believed with all of my heart that we had a relationship. I spent large blocks of time intimately communing with him daily. I thought I knew the bible well. I spent a great deal of time studying it. I trusted him...

Then Damon died.

I clung fiercely to my faith. I was sure... absolutely positive that at some point it would start to make some sort of sense. I studied harder, enrolled in graduate theology courses... and the wheels started to come off.

The thing is I had stopped seeing the scriptures through rose colored glasses. I started to see all of the things that didn't make sense. I started to see a god I wanted nothing to do with. I started to see holes and cracks... 

Then I started to mourn, not my son, I had been mourning him long and deep and hard since the day he passed. I had been laying beneith the waves of grief and PTSD, suffering through flash backs and panic attacks, crying until my vision went blurry for months. No, I started to mourn my faith. I didn't realize it at the time. I desperately tried to rationalize, to cling, but now I have started to realize that I really don't believe in god anymore. 

I want to. I wish I did but I don't. 

What do I do with that? I think there is still a part of me hoping that something will click. That some light will come on. That I will come back from this but I doubt that less and less.

The loss of my son and then my faith is horrifying, sickening, and terrifying. What now?

Jealousy

It's really not fair that good things increase the intensity of grief from its constant undercurrent of pain to the deafening roar of an impending tsunami. Not fair. Story of my life since March 27th 2012. NOT FAIR!!

I'm so damn sick of not fair. I'm sick of always being sad, even when I'm happy. Most of all I just miss my son. Constantly, always... the missing.

I've read some books written by people who have lost children that are incredibly optimistic, that talk about happiness and fulfillment. I find myself wondering if its real. Is it possible or are these writings one of our many coping mechanisms... one more way to try to survive... fake it till you make it?

There are have been a rash of beautiful, amazing, precious babies entering our lives of late. I hesitate to publicly admit that this has been so hard for me. It has, so so so hard. New life, new babies, new hope... it's hard. It's hard for reasons I can't fully identify.

Will and I have been at odds about the possibility of more children. He has every conceivable good reason not to do it again. I mean seriously, Damon died. There is nothing worse, nothing ever ever worse. As bad as you can possibly imagine it to be, it's worse, by a million. The rainbow baby nearly died... As if those two reasons aren't enough there's the whole I basically can't eat for nine months because I'm so sick thing, the I pass out on a regular basis thing, and the we're dirt poor PhD students thing. Bottom line, the hubby is right.

But I can't let it go. The idea that I will never feel a child move inside me again. That there will never again be that moment of birth, the possibility of a full healthy life. I just can't let it go.

I wonder if maybe I just really really want to get it "right." If I want to have a healthy baby who grows to a healthy adult... or if I will just always want one more because every fiber of my being aches from the gargantuan Damon shaped hole.

There is so much jealousy weaved through my grief. Is this true of all grief? I don't know. I'm so jealous. Why? Why do you get to tuck your babies into bed every night? Why do you get to watch your child grow up? Why do you get to have a normal, happy, ordinary life? Why??

It's a weird jealousy because the agony I feel for any parent whose child dies is tremendous. I don't want you to lose... I just want mine back.

I don't understand. I hurt. I'm tired. How am I supposed to live like this for the rest of my life?

Until next time....

honest

When I woke this morning my eyes were swollen almost completely shut and my heart was screaming in agony. It was my hope that last nights purge would lift some of the immediacy of the pain, it did not.

Last night, for the first time in a long time, I wailed. I moaned, uttering sounds to express the pain for which words do not exist. My hands groped the air, reaching for my son, coming back empty time and time again. These inexplicable expressions of grief are irrational, nonsensical. I know I will not reach into the dark and come back with my child in my arms... and yet my hands still reach for him, over and over.

"I'm sorry. I'm so so sorry."

"Damon"

"Damon"

"Damon"

"I miss you. My baby boy, I miss you"

"Do you know? Do you know how much you are loved?"

"I failed you. I'm so so sorry."

It has been a while since living with this grief has so overwhelmed me. For so very long I did nothing but grieve. I cried so much, so long, so hard that my vision went permanently blurry for a time. I thought maybe I'd go blind. I didn't care. I found a lump in my abdomen and was almost hopeful, maybe this is cancer, maybe it will kill me. I'm struck by the selfishness of that notion now. But for nearly a year I have functioned.

Some time ago I saw a quote that I think encapsulates grief so well. "It doesn't get better. You just get better at handling it." I've gotten better at handling it. The "handling it" feels so fake, so untrue. Often at the end of the day I lay in bed thinking "What are you doing? What are you doing acting like a normal person, making plans, pursuing dreams? You're shattered. This is fake." The months of endless tears, indecipherable moans... those were real. That was true.

Today I am not better at handling it. Today I am a mess of torn flesh, aching, missing, moaning, questioning, longing, and raging. Today I am honest.

Until next time

I'm sad

Damon

I've never posted pictures of Damon here because I couldn't look at them. Today I just can't stop sobbing. I can't stop the flashbacks or the tears so I've been looking at pictures. I miss him so much. I only have these two on my computer. I'm sure that seems weird. There are pictures all over the house but I just couldn't deal with them popping up unexpectedly. Anyway, These are the two I have right now.

He was so beautiful, so amazing. I can't believe he's gone.

I can't deal

Oh guys... March. The month of if onlys and the last times. I am a complete disaster.

I'm sitting at Panera. It's spring break and the hubby and I are trading off two hour blocks of time to work, study, etc. I spent the last half hour reading the blog of a bereaved father and crying, at the corner table, in Panera. I have a book on lizard behavior open in front of me topped with a to-do list that just keeps getting longer. I can not concentrate. I've been vacillating between frantic hyper focused bursts of activity and hours curled up just staring into the distance. I can't deal... I can't deal.

I'm back in grad school. GRAD SCHOOL, what the crap Jodie? Seriously? You still can't consistently communicate with other human beings and you're taking on a PhD? What-on-earth?

If I'm being honest I've actually been doing pretty well. I get into an academic situation and people start discussing speciation and gene flow and genetic drift and some part of my brain that is undamaged wakes up. It's the scientific, logical Jodie. I can rock a scientific discussion but if you want to talk to me about the weather or my favorite foods or, hell, anything chit-chatty I just shut-down. My brain stops working, literally (and I do know the correct use of that word).

Then, enter March. I can't think. I don't care. I just want to die. I want to curl up in a ball, sob until the tears wont come anymore and then just cease to exist. This is grief. It DOES NOT get better. It doesn't you just get better at handling it, until March.

At night I sit in the dark holding my rainbow baby and the flashbacks come. I've largely gained control of them... until now. I can't stop them. I can't control them. Damon...

I can't figure out my purpose. I can't figure out the point. Everything I used to cling to is gone. My foundation that I was so sure of has crumbled. The illusions are torn away and I am here, naked, staring into a black hole.

Here's the truth. I desperately want to believe there is some good supernatural being that gives a crap. I want to so badly that it makes me feel sick but I just plain don't. I'm past my rebellious phase where my anger drove me to hatred. For a long long time I hated God. I mean vehemently, horribly, desperately hated. I would think things like 'if the bible is true and it hurts you to lose your children then I'm willing to sacrifice myself to hurt you.' That's how much I hated him. I wanted to go to hell just to hurt him. I wanted to suffer for all eternity just to cause him what little pain I was capable of inflicting.

I still have those moments but they are fleeting. Now, I have resigned to a painful increasing belief that everything I believed so fiercely was a lie I told myself to cope with the crappy reality that is life. I told myself that there was a design. That there was a way to rise above. That even when things made no sense there was a higher purpose. I just wasn't capable of understanding it, being a lowly human and all. Increasingly, I just don't buy it anymore.

You have no idea how strong the motivation is to believe in a god, in an after life, for a parent who has lost a child. I guarantee I want to believe it more than the most dynamic preacher you've ever heard. I want to... but I don't. I want to believe there is some f-ing REASON. That I will hold my child again. That he is safe and happy and not just GONE. But the more I try to work through this. The more I study, the more I learn, the less convinced I am and that is a horrible feeling. Beyond the fact that it is terribly isolating to live in the bible belt and less and less believe the bible (which, by the way, I know pretty darn well) I no longer have a direction, a point, a purpose.

I simply cannot fathom a god who would allow this kind of agony and this agony opens my eyes to the unbelievable pain, loss, and devastation experienced by human beings every second of every minute of every day. Right now thousands of parents are watching their children breathe their last breath. Stop, stop yourself from rationalizing, stop yourself from skipping over that reality. Stop your self from erecting the shield that protects your heart from the truth that is life and death and think about that. Let it touch you. Thousands of spouses sit alone in a home that they shared with their beloved for decades just waiting to die. Thousands more are watching their partner slowly disappear as disease destroys their brain and body... making choices between feeding their children or housing them... making choices between surviving or killing.

I do not know how to deal. I miss him so much. I miss him so much. I cannot understand. I cannot function. It has been nearly two years. Flashes of his sweet baby body dressed in his pajamas flash in front of my eyes. His lips slowly turning blue as he died in the a hospital bed. How... how do I cope with this? How?

I can't deal...

good

This morning I’m running like a well oiled machine, breakfast, big boy dropped off at school (with his lunch, jacket, and homework), grocery store run with no meltdowns, and the rainbow baby is peacefully napping in his crib. I’m not exaggerating when I say this is the first time since Damon died that I’ve felt like I’m on top of things.

The weather has finally turned which means this thermophile is driving with the windows down and the radio up. After a loooong month of waiting we assembled the eldest’s new basketball goal and a gaggle of little boys ping ponged between the trampoline and the driveway all day yesterday. I’m riding high on feeling good for more than a few hours in a row. It’s a new good. It’s not the care-free all is right with the world good of those whose hearts are intact. It’s a good weaved through with pain and missing, those ever-present truths, but it’s good.

And the best of the good, better than the good weather, better than a peacefully sleeping baby, better than a day of simply silliness? We go the rainbow baby’s immunocompetency blood work back. His immune system is perfect. We found out last week. It’s only just now sinking it. His immune system is perfect, PERFECT. I wish I could describe the feeling in my chest. Imagine the most relieved and excited you’ve ever been, maybe it’s a little like that.

It’s a huge relief, knowing that his body can defend itself but still find myself counting the months. It’s entirely irrational but I feel like I’m waiting for the day he reaches 20 months to believe he’s going to be ok. Last night as we played in the bath I thought “You’re nine months old. Do I only have ten months left?” I resist planning things for him. I wont buy clothes for when he’s older, bigger. He’s three months from his first birthday but I refuse to plan anything. Plans are scary, life is scary, the future is scary. What if he doesn’t make it?

But for now the littlest beckons and I plan to learn to accept this new good in my life.

Until next time…