Have Courage, Be Kind: This Is Forever

One year ago my life changed completely, utterly, irrevocably.

Changes thrust upon me by the death of my only child, and the threat to my own life.

One year on from Hugo’s death, from my illness I can say I have survived. Or should I say surviving. This is forever.

In the earliest days after Hugo’s death, parents who had lived through similar grief told me the pain would diminish. Not get better as such, just become different. They are right: the pain has diminished because it is no longer that raw, all encompassing agony that made it impossible for me to smile, laugh, or think about anything but Hugo. It has evolved into a different sort of pain. The pain of absence, of loss. A shadow that is always over me, a deep pain in my chest, a constant ache, a fog.

The pain too, of knowing that as a bereaved parent, I will always stand apart in some way from other people.  The irony of knowing that in so many ways it is good to be different, that in so many other ways I celebrate diversity, but there is little to celebrate about what make me different to other mothers, the mothers who have never lost a child.

“How many children do you have?” Will never be a simple question to answer. That is despite preparing a standard answer: that answer is likely to change according to the context, the situation, how I think the person may respond, how I am feeling, how much I feel like talking about it all.

While I talk openly on my blog about HELLP syndrome, Hugo, his life, his death, and my grief here I am in control. On my blog I have the time and space to consider what I want to say, how much I say, and how I express it. My readers have the time and space to digest what they have read before commenting, should they feel they want to (there is no obligation). Or, they can walk away (close the browser) and I am none the wiser. In the virtual world no awkward silences, no struggling for the right words to say, no offence caused or taken. Much easier than in real life.

Hugo, hanging out in his incubator.

One year on, I am exhausted.

Grief is a heavy burden to bear. Getting up in the morning, putting one foot in front of the other. Finding my way in this new life, finding a new direction, things to feel positive about.

Fighting is exhausting.

Fighting those who were unable to accept that their response to my complaint about things that should not have happened was unacceptable, flippant. Having to meet with them, reliving the trauma, to help them understand.

Fighting to get the support I needed, through the treacle of a system so difficult to navigate, professionals with no idea of what to do with me, who told me ‘God will give me another baby’, and in one letter described me as ‘having trouble getting over the loss of her dead baby, Hugo’. While trying to get a satisfactory resolution to a complaint receiving emails from a senior professional that contained content so obtuse they were farcical.

Fighting the urge to respond premature baby success stories that say all you need is hope and love. Fighting the urge to write, in capital letters: “Nonsense! If that was the case a bouncing baby Hugo would now be in my arms!”

Always fighting.

So often upset.

Upset caused by an organisation that should know better. A survey about premature babies’ involvement in clinical trials that asked questions assuming only a positive outcome. The staff failing to appreciate not all babies survive.

Trying to remember the upset is usually unintentional. The upset is caused through lack of thought. Usually.

Exhausted by pointing out, often, what should be blindingly obvious if only people thought a little harder. Had more compassion, empathy. Were a little more human.

Exhausted because of being fuelled by anger and frustration at things that should have been done better, still should be done better. Why don’t people get it?

My life does not look how it should. Anger at the world, at the injustice, at specific people and processes for being utterly inept.

One year on, I have had enough of the life of a bereaved mother. Irrespective of whether Hugo has any little brothers or sisters, there will always be one child missing.

Stop the world, I want to get off. But I know that is not possible. This is my life.

Hugo enjoying a cuddle with me.

So what do I do?

Channelling, again, the wise words of Yoda:

Fear leads to anger

Anger leads to hate

Hate leads to suffering.

Being in a constant state of anger, frustration and hatred is not good for me. It leads to suffering.

My work making a difference to other families in Hugo’s memory will not stop, cannot stop. But I need to ease up. Try to look at things differently.

At the weekend I watched Cinderella at the cinema. Her mantra is ‘Have courage, be kind’.

Courage I have in plentiful supply. Particularly when it comes to fighting, as I have discovered. Kindness towards others comes fairly easily to me (unless you are one of the people I am fighting – but even then I fight with words, eloquent emotion rather than actual fighting).

Kindness towards myself is something to work on. Self-compassion. Giving myself a break. Knowing when to ease off.

My life is changed completely, utterly, irrevocably. One year on, I am exhausted by it all.

I have courage I need it not only for the fighting, but for the future too. Kindness towards others – because kindness is best, and right – towards myself as well as others.

This is forever.

The Star Boy’s Presence Never Dies

Do you remember I told you about Star Wars, Hugo? I loved to read to you. We had only a couple of books and I’d read them so many times I’d got a bit bored with them.

So, I told you the story of one of my favourite films. I’d watched them so many times when I was a little girl, and looked forward to watching them with you, too.

Both Luke Skywalker and the baddie, Darth Vader, said they could feel one another’s presence. That’s partly because they are both Jedi knights (or Darth Vader used to be before he turned to the Dark Side, anyway), and they have special powers. But then we find out that Luke is actually Darth Vader’s son.

Being a Jedi is pretty special. The Jedi share a special bond.

But it’s not as special as the bond between you and me, Hugo.

Me and Hugo, on the day he died.

You could sense my presence when I entered the nursery. I had to wash my hands as soon as I came into the nursery, and on a couple of occasions when I paused to chat to a nurse or another mum before coming to your incubator you expressed your displeasure by dinging your alarms. You wanted your Mummy! And I wanted you.

My presence helped calm you. A touch from me, some words either spoken or sung would help make you feel a bit more settled. Skin-to-skin cuddles were even better. You should still have been in my tummy, present with me all the time, and those cuddles were the next best thing.

Hugo gripping Mummy’s finger.

Daddy and I would say you were like Yoda. Not because you were green with pointy ears, but because very strong and brave you were, just like the Jedi Master.

“Size matters not…Judge me by my size, would you?” said Yoda when Luke doubts he can lift his ship from the swamp. And so it was with you, Hugo. You may have weighed no more than a tin of baked beans, but your size belied your strength and courage.

All the strength and bravery in all the universes were not enough, just like with Yoda. You left us, a year ago.

You are not physically, here, Hugo. But I can still feel your presence. Even though I constantly feel like I have forgotten something, hold a constant sense of loss, there is always a heavy feeling in my heart, there is also a sense you are always with me. Always present.

You are part of the energy of the universe. Or, Yoda would describe it as the Force, of course:

For my ally is the Force, and a powerful ally it is. Life creates it, makes it grow. Its energy surrounds us and binds us. Luminous beings are we, not this crude matter. You must feel the Force around you; here, between you, me, the tree, the rock, everywhere, yes. Even between the land and the ship.

It’s a funny old world, Hugo. I chose your name from a baby name website. The name leapt out at me, intuitively I knew it was the perfect name for you. ‘Bright in mind and spirit’ it means, and it suits you perfectly.

Daddy and I were not to know how your name would ensure you made your presence be felt after you were gone, though. Your nurses nicknamed you Hugo Boss because of your feisty determination; I’d not considered the reference to the designer but again, it was perfect. That means that seeing Hugo Boss branding has the power to stop me in my tracks. The branding is there anyway, of course, but it now has such a special resonance. The other day a mention of Hugo Boss in a book I was reading took my breath away for a moment. I am trying to see these things as a sign of your presence.

A mention of Hugo Boss in a book.

Daddy and I like science fiction. Not just films like Star Wars, but science fiction books, too. Did you know that a prize given for science fiction books is called the Hugo award?

All of this relates to the symbol we have for you, Hugo – the star. The star came about because I sang ‘Twinkle, Twinkle’ to you so often. It’s also because you are our special star. Daddy and I like to think you are having adventures among the stars, getting up to all sorts of mischief no doubt. Playing with all the other babies in the stars, but looking down on us too. We call you our Star Boy.

That’s why I cried when I watched Guardians of the Galaxy. The man’s Mummy had written him a letter saying he was her Star Boy, and that she was sure he was having adventures in the stars.

Your presence is everywhere, Hugo.

I always appreciated nature, but now the birds, the bees, the flowers and the trees are extra special. Your spirit flows through them all, their colours shine brighter because they make me think of you.

The yellow flowers, and name of the boat made me think of Hugo.

We have stars, symbols of you in every room of the house, to mark your presence even though you never physically lived here. Your hand and footprints on the star necklace I wear around my neck.

How much I wish you were present with me, so I could feel your strong grip, feel your warm little body, smell your skin.

All that remains of your physical presence are your little woollen hats (one of them goes with me everywhere). They still carry your smell. So, so precious. A lock of your hair, so rich and dark. Your hand and footprints. Photographs. So few things. But nothing would ever be enough.

Symbols of Hugo at home.

Mementoes of Hugo, me and the handprint star-shaped necklace I wear always.

It is a year tomorrow since you left us, Hugo. It is a year since the worst day of my entire life. Your physical presence left us. But your spirit will never die.

Your presence remains in your spirit, in your legacy, in how much everyone admires this beautiful little boy.

With all my love always (I love you to the moon and back a million times),

Mummy xxxxxxxxx

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