I Hope You Never Know – PTSD and a parent’s loss.

“I Hope You Never Know” –  A Cycle of Memories, Hope, Grief, and Anger.

I hope you never know what it’s like to know that you’re going to lose a child. To feel the weight of it crushing you down into the ground. To look at your baby and know that something isn’t right. To listen to the doctors do their doublespeak even as the voice you hate to listen to is buzzing in your ears, telling you that they’re lying or just refusing to face the obvious. That your baby is going to die.

brown eyes staring into space, landing on nothing as they flicker back and forth too quickly too quickly something is wrong

I hope you never know what it feels like to ask a nurse, with tears in your eyes, and grief in your heart “Is anyone actually in there?” when you’re talking about the baby laying motionless in the bassinet between you and her. To demand answers you don’t want. To deal with the pain that splits you as she slowly shakes her head and whispers “I don’t think so.”

the sound of a monitor beeping as it flatlines – which doesn’t make sense because you know they turned the sound off

I hope you never know what it feels like to hold back the tears until sitting in your car in the parking garage, slamming your head against the headrest of the seat, trying desperately to hold back the scream that’s building up inside you as you deal with the confirmation that you’re not the only one who has realized that something is inherently wrong with your baby.

I’msorryI’msorryI’msorryIloveyouIloveyouI’msorryI’msorryI’msorryIloveyouIlove…I’m sorry

I hope you never have to fight the knowledge that you know, deep down, it’s never going to be okay again. I hope you never have to go to the local shopping mall, forcing yourself to think positive, and stand there in the children’s aisle, feeling toys with your eyes closed because – as far as you know – your baby is at least mostly blind and deaf – but you still want her to experience something.

checking your voicemail to hear “We had to put her on the ventilator” on the day she was supposed to come home

I hope you never know what it’s like to scream and cry and pound the couch cushions late at night because you’re already working your way through the stages of grief, knowing your baby is circling the drain. Coming to terms with the fact that your life – which you thought honestly could not get any worse – has hit a new level of horror.

arguing with the doctors that you know your child is having seizures and WHY WON’T ANYONE F’ING LISTEN TO YOU?!

I hope you never have to hear the doctor telling you, as you sit curled up in a chair, that “at this point its really a matter of if you want to cause her more pain or not.”

Getting the confirmation that she’s seizing repeatedly, and sorry, but even though you’re her mother and we mouthspeak that you know her better than anyone, we couldn’t just take your word for it. We had to wait until one of our nurses witnessed it before we could do another test. 

I hope you never know.

Feeling the baby jerk repeatedly in your arms as she’s racked by seizures

I hope you never have to get a call, telling you your child is unresponsive – again – and knowing that it’s time to make the decision that no parent should ever – EVER – EVERF’INGEVER – have to make. I hope you never have to tell the doctor “Its time to let her go.”

Hearing her pained cries – getting hoarser every day – whenever you pick her up. Understanding on a deep level that the contact you need just causes her pain

I hope – how I hope – that you never have to know.

on the phone, wondering when you’re going to get your baby’s ashes so you can bury her – only to be told by the lady running the morgue that “its been a zoo down here, honey. Besides, we have to wait until we have enough

We have to wait until we have enough

we have to wait until we have enough

wehavetowaituntilwehaveenough

waituntilwehaveenough

untilwehaveenough

wehaveenough

enough

enough. bodies. to. burn. 

I was so hopeful about EMDR. Now I’m curled up on the couch, with antidepressants coursing through my brains, wanting to scream and shout and cry and rage and destroy and implode and … just not be. I’m so tired of being. I don’t understand how my body can go on. How I continue to put one foot in front of the other when I feel this horrifying level of a pain so great it makes you numb inside.

I hope you never wake up – even with meds coursing through your system – because the nightmares of your baby’s brief, pain-filled, life have returned again. I hope you never wake up crying because the only time you ever had a chance to see your baby smile was in your dreams. Because, trust me, it fucking sucks on a level you can’t even begin to comprehend unless you’ve been through it.

having the conversation with the doctors where it’s laid out that there’s no hope for that her mitochondrial disease will end her eventually

I hope – to any deity/universe/supreme mythical being/galactic consciousness – that you never, ever have to deal with knowing that the best thing you ever did for your baby was to let her go. ‘Cause even when you know you did the right thing – and I do, I do. – it doesn’t make it any easier. It doesn’t stop the doubts, the fears, the nightmares, the wishing, the soul-crushing grief that accompanies that decision – that you have to live with for the rest of your fucking life.

So, yeah, I hope you never know. But if you do, please know that you are not alone. If you need someone to talk to… I will listen. Because no one should ever have to go through this alone.

being told you don’t have to step foot in the hospital again, only to be told that sorry you have to come in to sign some paperwork ‘they forgot’.

….sobbing over the worried form of your now-only-living-child the night before she goes in for a surgery at that same hospital, knowing that she might not come out of it

The relief flooding you as she does…

Dealing with the fact that she’s still going to die, regardless, because of the illness screwing with her pulmonary system.

But, hey, she’s made it to 7 so far, so at least when she passes, maybe you won’t have to deal with the morgue worker telling you “We have to wait until we have enough.” again.

17 thoughts on “I Hope You Never Know – PTSD and a parent’s loss.

  1. I have no words. I wish I knew what to say, what to offer, if there was anything to say or offer. I am sending you lots of love.

    1. There is nothing, unfortunately. Just keep in mind that i, quite often, come from a darker place of mind. Unless you want to send chocolate. I’m always accepting donations of chocolate! 😉

      1. I admire your strength, even though I wish you needn’t be so strong.
        I am known for not sharing my chocolate (or any food, actually) but I’d make an exception for you, I’m in real need of a chocolate eater friend! 🙂

        1. What kind do you like? I’m a straight dark chocolate lover or hazelnut milk chocolate.

  2. It’s hard for me to breathe while reading this. Hard still after having done so. My heart breaks for you and your family. Truly. Much love to you. And if there’s anything else I can offer, you’ve only to ask. xo

    1. That’s why it’s written the way it is. To give people a taste of what sometimes even an hour is like for me. It’s like the elephant in the room. The more you try not to think about it, the harder it is.

  3. *offers a hug, a warm drink, and a shoulder* You have been, and still are, immensely strong. You did what you could, and you are still doing all you can. That alone is more than most people can manage. Please take heart that even if the nights seems endless, they never are. Even the worst of them will end and you will have made it through another one.

    1. I’m glad you can’t imagine it. No one should have to go through enough pain that they can.

  4. It’s crushing to imagine the pain, I’m crying at my laptop, all that I can think is … go back. go back to the therapist. Do more. If you can’t for you, do it for Miss L.
    Hugs

    1. Springtime brings its own sort of therapy. I’m heading to the garden centre later to pick up a crap-ton of mulch to start getting her garden pretty looking again. I have an appointment with the therapist a few days before it’d be her birthday. I just gotta make it through the nights.

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