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...