Community Voices: Grief is...

Today we are very pleased to present two more of Glow's community voices.

This first piece is by Ruby. Ruby writes: My second son Edgar died on the day he was born, 21 December 2012.

There is the ocean we went to to shake out baby ashes from a cliff-top. The ocean at the westernmost tip of Wales, a sublime spot, above a wide curving bay where his brother is digging in the sand and flying a little kite. The kite is up and down, trailing along the ground, bobbing up in the sky, hopping across the sand, tacking out above the line of the cliffs. Rising, falling, turning, falling, flapping, toddling. The boy running about is the only child visible to the eye. There’s no baby brother sleeping in our bright-blue beach tent either. His name is in the sand. I scratched it in with the child-size yellow spade meant for sandcastles. The sun is shining and the waves of the ocean are rushing onto the sands, rushing over and over, shushing my grief.

My grief is another ocean. A wilder ocean, an ocean of raging tears. So many tears left to cry, stretching out to the horizon. An ocean from which tsunamis crash over the established land and crush the buildings out of it, leaving in its wake a scene of devastation and no human in sight; there’s no-one left before that ocean. My grief is a vast, slate-grey ocean on which I’ll never come to shore.

There is the ocean we went to to shake out baby ashes from a cliff-top. And then there is the ocean of my grief.

The second piece is by Christina O'Flaherty. Christina is a psychologist and mother of two boys, with a third boy expected in April. She writes to share the experience of losing Finn, her first son, and the lessons loss has taught her.

Grief, during these last three years since I lost Finn, has been my teacher.  At first, I riled and raged against him, as I did most painful experiences in my life.  I fought the lessons and the process, outraged that my life had been so cruelly disrupted, but my patient teacher persisted.  Sometimes stern, often compassionate, my teacher continued to gently guide me to the lessons I needed to learn in order to move forward.  These were the hardest things I’d ever been asked to learn.

In fact, I confused them with punishment, which in some ways helped me to turn inward for an answer as to why this was happening to me.  But, I couldn’t really be sure the lessons would serve me until, a year and three miscarriages later, I felt I had nothing left to lose.  That’s when I learned to listen; to observe the lessons coming out of the chaos around me, like one of those pictures where a perfectly clear 3D image finally emerges from a mess of dots when you stare at it for long enough. 

Grief’s lessons transformed me and I think that was Finn’s purpose in this world.  I miss him desperately but I thank him for his legacy of lessons and love.

Where do you find yourself--right now--in this ebb and flow of grieving our children? Do you perceive a change in your grief from day to day? Month to month? Year to year? What kind of ocean are you in? What kinds of lessons are you learning?

the scbu legacy

There is a boy on my lap, ten months old, and he's been gasping for breath all evening and the antibiotics that should be helping are making a red rash creep up his cheeks. It's getting harder to breathe now and I'm looking at him and I know what the doctor - kind, understanding - is going to say next.

"I think we need to admit him."

I'm all on my own with a million screaming voices in my head and I don't know how to help him - or me - and a tear splashes down on his face.

I'm always raining tears on my boys.

And then she says:

"He will be okay."

Beat. Follows Beat. Follows Beat.

I look up and I can feel the look that I give her.

"I've been told that before."

Flatly.

Don't tell me this will be okay. You know nothing. You people can't save my boys. I don't believe you.

***

There is a boy on his lap, ten days old, and he's arching and gasping and the room has stilled to a horror struck silence. He's been stable - doing better -  but suddenly the world has dissolved and a hiccuping gulp for air has become a desperate grapple for life and he's suddenly all ours, our responsibility and I can see that he's dying and it's going to be unbearable, painful, the cruelest and worst possible ending.

The antibiotics that should be saving him are doing nothing and no one knows why.

I know what she's going to say next. Kind, understanding.

"I think it's time to make a decision. If you wait, there won't be a decision to make."

Beep. Follows Beep. Follows Beep.

Damn monitors. Damn wires. Damn tubes that came between us and didn't save him. I don't know what to do to help him. Or me.

And then I do.

I look up and I can feel the look that I give her.

"Do it. One last chance. Only one. Give him till tomorrow to try to live."

Don't tell me this will be okay. I've been telling you for ten days that this won't be okay. And you can't save him. You don't know why, but you can't save him.

And I'm all alone, all night, with a boy who said no to his one last chance and who chose to give up on breathing and chose to reject the help that all the medics who wanted to save him offered and who left me, with a million voices screaming in my head, with the knowledge that I let him go because that was all the mothering I could give him. That was all the kindness I could offer. That was for the best, for him, for all of us.

***

We don't talk about the SCBU days. We don't talk about how the rhythmic beep of a monitor still sends us into silent meltdown. We don't talk about how each illness, erroneous blood test, each new health problem for our girls and rainbow boy forces us to silently confront the reality that our child died and when we needed them, the doctors couldn't save him. Didn't know. Can do so many brilliant things but couldn't save a little boy who lacked the fight to live. We don't talk about how one doctor said he would do well, that 24 hours later we crashed as another spelt out what 'do well' might mean for a boy who didn't want to suck. We don't talk about the peak as he opened his eyes and began to respond or the pit of despair that hauled us down as something inexplicable tore him away from us again. When our subsequent child is - repeatedly - admitted to hospital with breathing problems (and lives, I grant you) I go alone to care for him. Alone beats the companionship in terror of the SCBU parent bedside journey.

Just waiting for the balloon to go up. Just waiting for the hammer to fall.

Three years on, we do not let ourselves look at Freddie's 11 days and acknowledge how easily it could all happen again. And that means we do not look at his life at all.

***

They couldn't save him. They didn't know. And so how can we ever believe  in "it will be okay" ever again?

How has the loss of your child changed your feelings to illness since? How has it altered your parenting to subsequent or other children? Are you stronger or weaker in crisis since? Do you see death lurking around every corner or do you thumb your nose at it? And if you experienced a SCBU (NICU) journey, what is it's legacy in your life since?

All the living people have their own hearts

All the living people have their own hearts

Functional hearts that beat and slosh their blood through brain and vein

Angry hearts betrayed, broken, wreaking havoc, taking names

Troubled hearts pounding for the pain of strangers

Retentive hearts for memories of rain and safety

Faithful hearts given away with the promise of eternity

Treacherous hearts twisting burning too soon turning

Playful hearts that invert an empty eggshell in its cup and invite their mother to tap it with a spoon

Wistful hearts trembling for midnight and the moon.

My other children grow and speak in different voices

With words I didn’t teach them

And explore their complex hearts

But my daughter’s heart with all its potential for infinite variety

Stilled in my womb and never had expression

And that became my lesson

To live another’s heart and cells and memory

To write her death in all its vile potency

To understand that I’m her only legacy

And there could never be enough

Money to honour her

Voices to speak of her

Or babies to save for her

The world in its entirety could not satisfy her loss

It rests with me to somehow be worthy of her precious heart

And so I end and start

This is my last post for Glow. I often think of my writing as part of Iris' legacy. How do you feel about creating a legacy for your baby or babies? Do you do something "in their name"? What does that mean to you?