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...