i am being nudged because there is a new site coming up and it’s about..READY FOR THIS…grief.
all kinds of grief, the grief spectrum. whatever.
anyway, i know about it. way too much. and i also realize this is an attempt, because it won’t be right.
not that it’ll ever be right, but i figure i’ll have to hone this to make it really readable, or good enough, or…
wtf? good enough? for who?
jesus, it is what it is. i write like i write. i feel what i feel. (sense the anger? i seethe a lot, sometimes it is a murderous rage, often directed at my dead husband. it’s a nice side effect of ptsd. as is depression and drinking and eating too much or too little – done all)
so.
january 21 2006.
i feel my husband get out of bed, roll over. “morning”
..i go back to sleep.
(it’s a saturday morning, it’s 7:30 am..yeah, i go back to sleep! don’t judge)
maybe, MAYBE 5 minutes later i hear my son running down the hall, screaming “daddy fell and there’s blood”.
up like a shot, into the bathroom, where he was feeding the dog. water everywhere. did he slip in the water? “No. i passed out”….
calm me to crazed son ”call 911 and then get me some pants.” (i thought enough to ask for pants. i’m great in a crisis.)
husband not in pain, but says he’s having a hard time breathing. so we sit him up (BTW… we is me and a 13 year old scared shitless piece of love). we wait for the ambulance. it seems like hours..under 5 minutes.
i am CALM. SO CALM. i put on pants, i hold husbands head. i speak soothingly to both my guys. i call neighbor to come over to stay with son while i go to hospital. ambulance comes, and as they get him loaded and i see i can’t go in the ambulance, i grab water and my knitting…and then i BRUSH MY GODDAMED TEETH (WTF? what was i thinking?), because i figure i’ll be at the hospital for a while, and. and. and…i can’t remember if i told him i loved him. (drives me insane to this day)
i called my friend to meet me at hospital and took off. got a call en-route that ambulance was changing hospitals…what? why?….so i pull a u-turn in the middle of the street and head to the 2nd hospital. still..calm enough to call friend and tell her. weird.
(Later i find out that the 2nd hospital was trauma center. great)
when i arrive she is there, we go in. i speak to a nurse who IMMEDIATELY brings us into the ER. at this point….well, the dread is setting in. i breathe, say to susan “this can’t be good”.
AND NOW I NEED A BREAK…saving as draft.
(BTW..it’s been almost 5 years. i still can’t breathe, often, when i tell my story. and now i’m back, 6 days later to, hopefully, finish).
and i walk into the ER room that has doctors hustling and bustling (that sounds like a song from Oklahoma) and all i can see/feel/hear/ KNOW is that there is no life in that room. because, the only life i cared about is not there. the doctors kept working on tom as i held his hand and cried and asked for “a xanax, PLEASE”…, but he was gone, we all knew it. and there was a point when i just asked them when were they going to stop, so i could leave and get my son (my son, our son…how was i going to tell him?) and then they stopped. and called the time. and it was truly over.
(crying again. i wonder when i ever will not cry telling this?)
my husband and i met in 1985, married in 1989 and he died in 2006. our son was 13. my son will be 18 on september 21st, and the pain is still acute for him. but we’re going to get tattoos, SO FUCKING THERE! (tom HATED tattoos…we like them)
i’m older than most of you who will read this. i didn’t know about blogging when tom died, i wish i had. it would have helped.
the only thing i regret about that day, in terms of my choices, was the choice to leave my son at home. it seemed right at the time. i believe it was a mistake; we were without each others most important OTHER person at the worst moment of our lives.
i have never written all of this before, and it is filtered through several years. but, it is exactly how it was, because i will never forget it. and there is more to say about that day, and friends and how to deal with grief, for yourself and others, and i will.
i know i will because now i NEED to.
and i trust that this new site will be a safe place for us all.
When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.
I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.
Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.
Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.
When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.
It’s hard to believe that my daughter is now a patient.
In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.
Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.
I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.
I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.
For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.
Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.
At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.
Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.
Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.
Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.
I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”
And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.
Twitter was there when I returned to my OB’s office for the first time after my newborn daughter died. I grew anxious as the minutes passed and she didn’t pop into the exam room. But, somehow, knowing people were out there listening as I was stuck in a tiny cell filled with pregnancy memories, I managed.
This wasn’t the first time Twitter was there for me. I reached out through Twitter and blogs just a few days after Cora died. Social media gave me purpose those early days. I wanted to share Cora, share her beauty, and the best way I knew how was by talking about her. I did constantly. And, people listened, reached out, let me talk about her. On days when I couldn’t find the words to speak, I could always find something to write.
Some of you might be aware of Cora’s story, but in case you aren’t, here goes. I had a healthy pregnancy and delivered Cora November 30, 2009. She lived five healthy days, no signs of a problem. One morning, I was breastfeeding her. I looked up for a second and looked back down and she was dead. Suddenly. Out of nowhere. It’s so traumatic. I sometimes worry I give people PTSD just sharing her story. We rushed her immediately to the hospital, but it was too late.
Turns out she had an undetected congenital heart defect. The coroner told us a few days later. We looked up congenital in the dictionary, and I took to the web. A Google search was sort of helpful. But even more helpful? Connecting to real live people that picked up on my tweets naming Cora’s killer.
What’s helped me more than anything is giving back. Cora changed me so much. I’ve never felt such love. She was stunning, in so many ways. I instantly felt a need to make sure that beauty multiplies. On most days, the only thing that keeps me from losing my mind and crawling into bed and never coming out is sharing her. Knowing she’s reaching people and saving lives.
I never thought I’d get out of bed each morning because of blogging and Twitter. I remember feeling silly at first emotionally spewing everything on my blog, but the silliness was outweighed by the support. By all the people that felt like they knew Cora and wanted to help spread her story.
Blogging gives Cora a voice. Cora lives.
People are what got me through ultimately. The power of the good of people. And, the blogging community? Full of some of the best.
As women, we have to learn to listen to our gut. {Even when it’s telling us something we don’t want to hear.} And in March 2010 my gut was telling me one thing – loud & clear – “You must turn this ship around or it’s going to sink!”
I know, right? Clearly, something I didn’t want to hear.
You see, my son was nearly killed in an accident in July 2009 and eight months later, the bones were healing, but I was still broken. And, something had to give. I was bending and bowing under the heavy load I was carrying & I had to make a choice. The first choice that would turn my life, this ship, around was telling my husband the truth. I had to tell him of the awful thoughts that would fill my soul and haunt my nights.
I had to tell the man I love how often I had pictured him dead or dying, with our beautiful, innocent, children at his side. I had to tell him of the times I lied and told him I was sleeping downstairs, when really? I was sitting in one of the kids rooms crying. Picturing them dead. There is no marriage course that prepares you for that conversation. No book that tells you what to say when you’re wife is losing her mind.
I am blessed. And he reinforced what my heart knew and my mind couldn’t comprehend when he hugged me and held me and told me that I needed to call a doctor. {I knew in my gut that this was what I needed, but it was nice to hear him say it.}
You see, I was dying a slow death at the hand of post traumatic stress disorder. At the time I didn’t know what it was, but I knew that anxiety and fear were ruling my life. I was not living with intent.
Post Traumatic Stress had taken over & changed the woman I had once loved. It had stolen my husband’s wife & my children’s mother. I am a firm believer that life shouldn’t be the same after trauma, I expect that. I accept that. But, I also knew that I was not living and I didn’t want to settle for anything less. When you believe in your heart that one of your children is dying, is going to die, may die…there are no books or blogs or words or friendships that are inspiring enough to settle your soul.
And, even after I tucked my boy away in a bed, EIGHT long months later…safely upstairs, without a wheelchair, after a long day of school and baseball practice, I couldn’t shake my spirit of those haunting thoughts. Those reoccurring nightmares, I had when I was awake.
Nighttime would creep up on me like a thief and steal any sanity I had managed to build up in my reserves for the day. It was always worse at night.
The blackness would slip under the door frame and suddenly I would grow weak under the urge to hold my children tightly and scream into the thick air. The thoughts that filled my head were not that of a “sane” woman. I no longer recognized the woman that replaced me when night fell. The fear of losing my loved ones began to grow…and grow…and grow…
I didn’t tell the therapist everything right away. But after a week of visits, I let it all go. I told him that I pictured my baby dying of SIDS every time I closed my eyes. I would sit in her room in the dark on the floor and use my phone to light up her face so I could watch her breathe. I would rock in her room through the night and cry. And torture myself with the thought of finding her lifeless in the morning. A thought that wouldn’t let me close my eyes.
The blanket the boy brought home from the hospital would trigger phantom day-dreams that would leave me shuttering. I could hear him screaming in the night, in pain, even after the pain was gone. I would lay awake at night and watch my husbands’ chest rise and fall with each breath. I would picture how badly my heart would/will hurt when he dies, I would think of losing my parents…losing my aunts. Death consumed my thoughts.
I couldn’t drive in my car without sobbing uncontrollably. Every slammed brake or rushed traffic light would leave me in a puddle of doubt and fear. I was convinced someone was going to hit me, hit us, kill my family…
And, I knew this wasn’t right.
There were times when my mind would convince my heart that I was better off dead, rather than face the sadness the future holds. I would pray to please let me die before my children, my husband…and at times, I would even think “before my parents.” I would remember the agonizing pain of the unknown – as my son was air-cared to the local Children’s Hospital – and I would pray that the demon of memory be taken away from me.
But, as I told my therapist of my thoughts & fears…as I spoke of the anxiety that chased me in the night…the fear seemed to find a place where it could lay dormant. And I was fine with that. For now.
It’s been just over one year since the accident. And I still know that the dormant monster is waiting. Lurking…
And, there are times when I have talk myself off the ledge. Times when I feel the anxiety creeping back in. I accept the fact that life will never be the same. I accept the fact that it’s not suppose to. And, I know that with that change comes baggage, that at times will be too much to carry. But I also know I can face this demon head on, with the help of my family & friends…and even my blogging community.
I am working hard to turn this ship around. To make up for the ground that has been lost. To find my way back to the shore of safety and maybe, just maybe, even learn how to live on the sandy, white beaches of satisfaction.
