fridays / grief / patpatforever / personal crap / progress / SUDC / triggers

SUDC The Easy Way

February 8th is a hard date for me. Now that it’s not impending and looming over me, allow me to attempt to describe the first one’s impact on me and my life and why I know how many Fridays it’s been since. On Friday, February 8th 2013, I went through a nightmare I thought at the time could only be just that and my world, mind and heart were forever changed.

I climbed into bed, exhausted after a 100 mile trip (each way) to Sacramento and back to get my oldest son and faintly hoping for rest next to my cosleeping  youngest at 14 months old, whom I had nursed to sleep a mere two hours before- a familiar ritual that had repeated itself so often, it was beyond second nature. It was the first time he didn’t wriggle towards me to nurse- it was either my first successful sneak-in ever, or something wasn’t right.

I was grouchy. I was exhausted. I was already half asleep, reassuring myself  that I should be grateful for the possible (elusive, blessed!) possibility of sleep, that there was nothing to fear, and that checking the backs of babies for breathing is a habit of new, inexperienced mothers… yet, I wanted the reassurance and allowed myself the indulgence of the rhythm of his breath before sneaking in what sleep may come. I reached down from my pillow toward his back- and it was still, like a stone.

I turned him over and he was nearly blue. I wanted to scream, but the older kids were asleep and I didn’t want to alarm them. I also started rationalizing that it was going to be okay, that it would be a scary moment for the books, over in a moment, as soon as CPR saved the day. “BABE? Come in here RIGHT NOW.” signified the start of the longest short amount of time I could never imagine. I remembered to call 911 from the house phone instead of my cell- one of the only reasons I even keep one at all.

I have spent lifetimes in conscious and unconscious dreams replaying those handful of moments; the counting on the phone with the operator,  “Is he breathing? Two breaths, honey.  Do it again. 1…. 2…. Good. Now count with me. Compressions: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, …..” the blur and the blare of the sirens… when I heard them coming, I grabbed a shoe and put it on, then realized seconds putting shoes were seconds wasted,  and I ran outside with one shoe on (seconds taking shoes off being also wasted) to direct the firemen any second faster that would help.

I remember watching them carry his limp body into the back of the ambulance and trying to get in the back like they make you think you can in the movies- but really you have to go in the passenger seat, where I sat fluctuating between twisting my body to see if he’d changed, and rocking back and forth, mind and heart stammering, begging, bartering with any powers that may possible be, “Please don’t take my baby… Please don’t don’t take me baby… PLEASE don’t take my baby, PLEASE DON’T take my baby… my baby… my baby…”

Somewhere in that ambulance, his amber necklace was cut off. Somewhere in that ambulance, a piece of my heart fell into the same nebulous crack, both never to be seen again. The moments that followed all bleed until now; they are all differing versions of disbelief, shock & numbness; rage to burn through galaxies with a black hole to store them all in, a place where there once contained the very pulse of my day to day life… a pulse that despite tubes, machines, experts and prayers would not move that fucking green line on that monitor.

That fucking green line.

I could see the doctors begin looking at each other.

“Well, we can keep going if you-”

KEEP GOING.” What the fuck? WORK. Why isn’t it working? Please baby, breathe, beat, open those eyes… 

“I need to touch him… I need to touch him. Can I touch him?” Danny asked.

The doctors nodded and cleared a space as they worked. We stroked the warm softness of his feet and prayed and pleaded as hard as two people have ever begged for anything in the history of humans.

may you never

They kept chest compressions and everything else I’ve ever see in the movies  for a few more painful seconds, minutes… it’s all the same when they baby you just nursed to sleep is naked, sprawled, pale and and still on a pale and still operating table in a room where everything else is whirling with lights, beeps, tubes, glances and opinions.

The head pediatric nurse laid her hand firmly on my arm, looked me in the eyes and said, “I’m sorry. There’s nothing more we can do. He’s gone.”

My knees gave. Danny and his godfather, also the pastor of the church we grew up in, caught me- I don’t even know when he arrived. They led me to a room in the back where I rocked Patrick until he would no longer bend… I didn’t know what else to do. I started to take pictures, realizing I was never going to have pictures of me holding him again when my sister grabbed my phone and took over. They are the most bittersweet pictures I have and have ever seen. (You can see single one I posted on Instagram here, but I don’t want to look at it right now.)

The first touch of visceral reality came when my breasts reminded me he was probably hungry. I wanted any escape possible, any way to make it stop, to make my biggest worry be when he was going to go to sleep that night or if he was eating enough of the right foods. When they came to take him,  I couldn’t let go. I wouldn’t. I told the hospital staff they’d have to drug or fight me to take him from my arms and they got the memo.

I stared blankly and retreated inward as the shock and meds set in. I was finally able to give him to my sister, who gave him to the detective. Yeah. The detective. I didn’t even care what came next. I smoked a cigarette and tried to figure out how to tell my children their brother had died.

And that’s how I learned about SUDC, or Sudden Unexplained Death in Childhood.

You just learned the easy way.

In a hospital, clutching the warm cocoon of my baby with tubes they couldn’t remove because of protocol, I learned that there’s a SIDS for kids; that even with no prior medical problems, even if you take all of your vitamins and birth naturally, exclusively breastfeed to 6 months and continue on demand until toddlerhood, wear your baby, sleep together every night, make food from scratch, teach sign language so you can communicate together… even if you’ve recently and suddenly lost your father to cancer and you name your son for him, even if because of that death you live truly appreciate every moment of his precious life… your child can just die– and for reason no one on earthside can understand.

SUDC does not discriminate… it’s just so terrible, no one wants to talk about it. It can happen to children all the way up to 18 years old. But its so terrible for me that I can’t stay silent anymore.

After somehow bringing myself to leave Patrick’s earthly body at the hospital and be driven home, we were followed immediately by detectives (the same man from the hospital, plus a woman) who asked us to step aside and explain ourselves once again as they took pictures of our home, room by room. We had to use his stuffed duck to show them how we found Patrick and what we had done from there. They said they would be in contact if they or we needed any more information and were never heard from again.

We were told an autopsy and full investigation would take 8-10 weeks- still now, three years on with no conclusion. (I’ve called the coroner dozens of times by now, to the point where I say, “Hi, my name is Julie, my so-” and I get cut off with, “Is this Patrick’s mom?” Yes. Yes, I am Patrick’s mom, now and forever.) I wondered how much he would have changed by now, and how much of my life would change now. Everything felt as if it were occurring at the bottom of the ocean; slow, cold, pressurized, dark. I couldn’t even tell if I was moving anymore.

I guess I slept at some point- Danny took a picture of me sleeping fully clothed, still in my jacket, clutching his duck as proof for my friends because we both hadn’t slept in so long. By the time it was light again, I was woken by my cellphone was ringing from the hospital, asking if we would donate PatPat’s heart. Good morning to me. They want his heart? That’s specifically what wouldn’t work for him. He was on oxygen, but they couldn’t jump start his heart… and they can make it work for someone else??

What.
the.
actual.
FUCK?!?!

It was the first strike of the match inside my heart where I felt undeniable rage. I was shaking. I wanted to inform the as-nice-as-possible lady that Patrick’s heart is the part they’re supposed to use to explain to me about some unknown, nearly impossible to detect condition Patrick somehow had that made him cross The Bridge in his sleep with no pain and no fear. THAT is the call I needed.

Instead, the as-nice-as-possible lady informed me gingerly that his heart could save the lives of two other children, how donating his corneas could save the sight of more than one child as well, and that there was a time limit.

My head and heart were spinning. I asked her if I could have some time and call her back. I thought of other parents, rocking their babies in hospital rooms with the same tiny tubes and tape, with a shred of hope left- and what I wouldn’t have given to have the possibility of that sliver of hope extended to me just a few hours earlier.

I thought how horrible it must be to have a sick baby and half-hope for a healthy baby to die so that yours can live. Though I was furious that my perfectly happy, healthy baby wasn’t given the same opportunity to live, I felt twice as strongly about having and giving that ability to other families, so I said they could use whatever they could, then I went back to bed and stayed between there, the kitchen and bathroom distracting, numbing and sleeping through as much as I could for the next week, month, year.

*

And that’s my Friday the 8th story. That 12 hour period from 10pm-10am Friday the 9th changed me forever and I’m still trying to figure out how to carry the weight of it. I still look at pictures and wonder what I missed, what I could have done. I wonder who he would have been, what he would have liked, the adult that he would be. Would he want children? How would he have changed the world? You don’t just lose a child, you lose that person’s entire input on the world forever. It’s all left in your head and heart.

I hold fundraisers to donate to research and talk about it to increase awareness, like now. I talk about him and share pictures because I want him to still have space in the world, because he will always have space in mine. Nothing really helps. I just want my son, and I’m never going to hold him again. It rebreaks my heart every. single. time. he crosses my mind.

But I’m grateful, too. I’m grateful to be the one that got to have the most contact with that sweet boy. I carried him in my body and fed him from it every day of his life. I wore him constantly and our hearts were always close. It gives me some solace to know that our relationship was as easy and beautiful as it possible could have been, though that huge love is the direct reason my grief is so vast- they are transversely proportionate.

It also puts another small layer of pearl over the sand each time I hear that my sharing about Patrick makes people be gentler with themselves and their children, that because of him, they have more patience and are able to appreciate and wait through the little things more. My grief for my father taught me that lesson and I’m forever grateful Patrick’s life was the beneficiary of that moment to moment cherishing of his life. It’s the one thing I can hang onto: I loved him in every way I could with everything I had, and I always will.

lucky

Grief twists your heart around your mind and your stomach around your lungs, which are twisted back around your heart again. And somehow, you keep breathing. And it’s the most fucked up thing that you are able to breathe because you feel like you are and very well should be dying, too. The world just somehow keeps going as if yours didn’t just turn to dust and it’s one of the hardest things to comprehend. Time passes one breath at a time for a long while. It does eventually move faster, but there are always times it goes back to simply breathing and waiting through feeling like your cells are going to implode from the heaviness. I felt like that the morning of the 8th a few days ago. It happens. I bet it always will, and that’s okay.

But I’m here, and I’ve finally finished this post that I started nearly three years ago. It’s been hard to think about, nevermind write about, but the way out of pain is through. I haven’t been strong enough until now to reread and then write about the night that hurts me so much until now, but I’m not strong enough to carry it by myself and it’s finally time to get it out so I can let it go to whatever extent I am able. Fuck, I hope this helps.

Thank you for being here with me.

For more information on SUDC, click here.

SUDC corrected

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9 thoughts on “SUDC The Easy Way

  1. Pingback: To The Ones That Stay: How To Support Grieving Parents | The Progressive Parent

  2. I bawled reading this. I cannot fathom your grief. I’m so sorry for your pain. Thank you for your bravery in sharing your story. My heart is broken for you. Rest In Peace, little Patrick.

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  3. Pingback: I Am Not Anti-Circumcision | The Progressive Parent

  4. Pingback: One Love and the Love for One: Patrick James Doyle, 12/4/11 – 2/8/13 | The Progressive Parent

  5. My heart cries for you, your family, the loss of your sweet little boy. I know it came during a time when you were still grieving your father. Life is unfair sometimes. No doubt about it. I’m glad that you have finally been able to share your heart & grief because it will help others who unfortunately, through no fault on their part, will have this same nightmare to live through. I’m thankful you have your family to lean on, and a loving God, who will always be there for you.

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  6. Always standing with you Julie… over the loss of our children to SUDC. Thanks for blogging this… this life after our loss… I don’t have the stomach to write what happened to us that terrible Sunday morning… the Sunday Lily never woke up. It was extremely hard to read your story… and not think of my memories… Lily’s body, her face…

    After 18 months, this loss still drops my 6’1″ 200 lbs frame to the lowest pits of darkness.

    Fuck, I hate ‘this’ life.

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  7. I am here with you. I am a complete stranger to you but I honestly do think of you and your family every single day. There is an ache in my heart for you and your loss. I wish so much for you to find true happiness again but seriously how could you. Things will get better, easier but there will always be that empty seat and thousands of what ifs. He was a beautiful child. I think of him as I put my kids to bed every night. Sending up a quick prayer that I never have to experience what you have and are experiencing. I am so so sorry. There are a million things I want to say. He is with you! So is your dad! You will see them again!! I believe this so fervently! Just like I will see my mom and baby I lost in the second trimester. Until then we must find a way to enjoy each moment we have with the rest of our family still here. I don’t know. It is so hard but it must be done. Your other children are so wonderful and deserve everything from you.

    What you wrote was not easy to do. I hope having it finally all out there and this piece written can relieve you a bit even just for today.

    love you. fuck sudc.

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  8. My heart just broke all over again….and again. and again. I remember that day that changed all of our lives forever….we will never forget that sweet boy, those eyelashes, his smile….I could go on forever. Grief is a journey that never ends. The road may get easier from time to time, but we carry him in our hearts forever. Love you, dear daughter.

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