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...
Wednesday, August 20, 2014
Monday, August 11, 2014
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...
Monday, July 28, 2014
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...
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...
Saturday, July 19, 2014
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...
Wednesday, June 25, 2014
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...
Thursday, June 19, 2014
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.
Sunday, June 15, 2014
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...
Subscribe to:
Comments (Atom)

