The Silent Salute #WaveOfLight

There are days when I ache to speak of Freddie with my voice, not my fingers. Days when I wish for someone to sit with me and hold me while I sift his hospital notes and my hastily copied social media comments for the snippets of his life which have fled my memory. There are days when I wish I had the strength to fundraise, build a shrine, bury him, garden for him, make a monument to him. But I don’t have the strength, not yet. I’m still too small beneath his loss. There are days when I am angry. There are days when I wish that people who should know better did not give me a level, tight lipped look when I speak of him and wait for my indiscretion to pass. There are days when I am angry enough at people who think a live baby is a given, who see scans as nothing more than gender discovery days, who buy with oblivion and abandon. And there are days when I am glad they have that innocence. There are days when I wonder how anyone survives and then – I discover anew – I am surviving.

If I’m to be afforded the occasional courtesy of a listening ear – and more than a courtesy from many, regardless of how little I take them up on their offer – then it seems to me to be right to try not to force them to remember too often. It’s one thing to ask for remembrance and another to push confronting the reality on people too often. I’m no longer comfortable with my pain-shot remarks of my past, telling people to shape up and smell the coffee of what can happen – and did happen to us. I didn’t do a good enough job of painting a picture of his life, to expect people will truly remember him, but I hope I did a good enough job of describing the hole left behind that when people think of lost babies, he will be a fleeting memory too.

How can I paint a picture of his life? I don’t know who he was. I can barely remember the days he had and I’m too afraid to look.

This was Freddie’s first full day of life, I think. I’m sure it was the Saturday. He had had a brain scan in the morning and then very experience and highly regarded doctor who did it had found no bruising or swelling or bleeds. He held my arm and said “I think it will be okay”. I sat by his cot when he had that scan with my heart in my mouth and I couldn’t believe the result. It seemed a miracle. He’d had some light meds the night before when they had wondered if a tremble was an (expected) fit but he was already off the ventilator and only having a little oxygen. He was moving, turning his face to my voice and put under lights due to jaundice, hence the eyemask. I suppose that’s why I never use this photo, because it covers his face but I look at it now and I see the tone in his arms., the fat on his body, his good colour. His mouth isn’t slack, his arms are flexed. People thought he was going to be okay. He even had calpol because he felt a bit hot after a day of light therapy. He wasn’t okay, but he was doing pretty well. The nurses were cheerful, the paed joked about his ability to be breathing. That night I held him for the first time and he had his eyes open and he looked at me. I held him to my breast and he licked at milk on my nipple and tried to suck.

And then another doctor worried that she was missing a fit and I told her it wasn’t, that it was a lip tremble that all my babies do, but she didn’t believe me and I let them drug him and I just never got him back. He went from this to the straight and silent baby who only woke up again in time to get sicker and die.

A normal brain scan and EEG that was almost normal despite being heavily sedated and yet we lost him. A baby who knew my voice and could try to look at me more than 24 hours after birth. And we have no idea why.

And each year I lose him a little more as the snippets fade and the brown envelope of notes of the shelf becomes and ever more foolish place to go looking for him.

***

At 7pm today, around the world, people will light candles to remember the lost babies we hold in our hearts. If you have Instagram, search for #waveoflight. It is beautiful and poignant. And if you have a moment, would you light a candle and whisper Freddie’s name alongside the names of the babies you hold dear. It would mean a lot to me. It would mean a lot to all the people who have to find a way to celebrate a lost life on International Pregnancy and Infant Loss Awareness Day.

This song is precious to many of the babylost, I know. It seemed particularly poignant to use this version, starting just 2 minutes in, when Gary Barlow had lost his own beautiful Poppy, born still, only days before singing it among fire and light and flame. I held my face in my hands and sobbed when I watched him sing it, so beautifully and oh how ironic to have penned it for himself, his family, his wife, his children, his daughter, without knowing. My heart squeezed at when his voice broke, when he recovered, at the pride on the faces of his friends, at their readiness to support him.

***

I can’t do better the the words I wrote 2 years ago, though I wish I could. So I will repeat them. Forgive me.

This year, like last year, I remember.

I remember Freddie.

I remember a twin.

I remember Evie Rose.

I remember Benjamin.

I remember Joel.

I remember Toby and Estella.

I remember Sophia and Thomas.

I remember Matthew.

I remember Lily.

I remember the lost potential children of friends & family who I love.

I remember Florence Violet and Emma Faith, daughters of mothers I knew before these losses pulled us together.

I remember Daniel.

I remember Minnie.

I remember Thomas.

I remember Jack.

And I remember all the babies of people who have kept me sane this last 3 years, 6 months and 2 days on my blog, on their blogs, and at Glow. A list I will inevitably keep adding to for days as I get to yet another blog I read and realise the enormity of loss that silently surrounds us. (Forgive me if I have not yet added your child, please remind me, my memory & rss feed are equally inadequate prompts.)

I remember Iris.

I remember Lucia.

I remember Georgina.

I remember Charlotte.

I remember Alex.

I remember Reid.

I remember Hope.

I remember Haloumi.

I remember Gabriel.

I remember Micah.

I remember Cullen.

I remember Otis.

I remember Foster.

I remember Liam.

I remember Laura.

I remember Joseph.

I remember Snowflake.

I remember Margot.

I remember Catriona.

I remember Isabelle.

I remember Rhianna Lily.

I remember Daisy.

I remember Poppy.

I remember Matilda Mae, who joins this list now and whose loss seemed to bring a whole new wealth of meaning to “this should not happen” to many people I know.

I remember all the babies of the men and women on Glow who have stood beside me this year.

I am thinking of the babies who belong to women who have told me their stories this year in person, to comfort me and abide with me, but who have not always told me their names.

I am thinking of babies held in hearts and kept private to their families.

I am thinking of the mothers for whom hope was gone almost before it had taken root.

I am thinking of the babies who were longed for and never came.

I am thinking of the mothers for whom pregnancy became surgery & medical procedures.

I am thinking of the women who made the decision to say goodbye for a greater good, while it tore their hearts out and broke their souls.

I am thinking of the mothers who discovered horror on a day that should have meant a whether pink or blue nursery needed preparing.

I am thinking of the mothers who felt stillness where a moment before there had been back flips.

I am thinking of the mothers who prepared or laboured to deliver a baby knowing they would never hear a cry.

I am thinking of the mothers who unexpectedly heard the loudest silence in the world.

I am thinking of the parents who hovered over a neonatal crib, hoping for a miracle, learning medical terms they never wanted to know.

I am thinking of the parents who chose the moment of their child’s last breath and held them as they died.

I am thinking of the parents who didn’t get there in time to do that.

And of all those who fall into the myriad of cracks between, each a chasm as deep and dark as any other.

And for the fathers, the siblings, the aunts and uncles and grandparents for whom life is never quite the same again.