An Open Letter to a Recently-Bereaved Mother

Dear Broken-Hearted Mama,

I see you, numb.

Yet so full of pain. Pain that you cannot even begin to describe.

You may feel like the pain is unbearable, that the pain is going to crush you, that the pain is too much.

You may feel like your life has ended. That you do not want life to carry on.

I understand. I have been there.

My son Hugo died at the age of just 35 days. He had been born when I was 24 weeks’ pregnant, my first and so far only child.

Each one of those 35 days is so precious, but not enough.

No amount of time can ever be enough.

While your life has not ended; you continue to exist, your life as you knew it has ended. The end of innocence. The harsh realisation that bad things happen in life – and not just to other people.

Bad things happen to you, too. No one is immune.

We evolve during the course of our lives, of course. But grief changes you: suddenly, abruptly, shockingly.

Your relationships may change: some for the better, others for the worst. You are likely to discover that the old adage about seeing the best and worst of people during times of crisis is true.

Some people – even those previously closest to you – may not know how to deal with your changed relationship. The changed you. Most will want to do all they can to help you but because they do not know what to do for the best may blunder, put their foot in it, utter endless platitudes, and when tempers get frayed make you feel as though you are at fault.

The knowledge that the blunders are well-intentioned is unlikely to make you feel any better. It may feel like constant salt in the wound.

Me and Hugo enjoying a cuddle.

Me and Hugo enjoying a cuddle.

So much of your pain cannot be expressed in words. What you may want most of all is someone to sit with you as you cry or stare into space.  Someone to understand that you don’t know how to express your emotions. That sometimes, the power behind those emotions scares you. That you think the pain will never ever end.

But many people are uncomfortable with silence. People may want to talk at you, want to tell you about their own experiences of bereavement. Or they may want to tell you what they think you should do. They want to make you ‘better’, not realising life will never, ever be better. You may well sit their patiently waiting for them to shut up – but it is fine to ask them to stop talking, too.

People may not mention your child’s name, worried it may upset you but failing to appreciate that not mentioning them upsets you more – and after all, the worst has already happened.

People may not want to talk about your child with you, filling you with frustration. They were your beautiful, perfect child who you grew and love with every cell of your being, now and forever more. You want to talk about them, how proud you are of them, irrespective of the time you spent with them. This reticence from other people may lead to resentment.

It may lead to a feeling of isolation. A feeling that it may, as a consequence, be better to avoid certain people, certain places, certain situations not because you want to, but because you need to protect yourself from further hurt.

The knowledge that you are now ‘different’.

That is enough negativity for now. As I said, you will see the worst in people – and the best, too. The kindness of people can know no bounds. Compassion, empathy, the compulsion to reach out and help – the help you need, not what they think you need.

Those who will sit with you as you cry, as the cascade of tears fall, holding your hand and passing endless amounts of tissues..

And those people can often come from places you least expect; relationships can take on a new depth, friendships and acquaintances can be strengthened, new friendships forged often with strangers with whom you may now share a common experience.

Those who share the common experience, those who ‘get it’ are invaluable. It often does not matter if you have never met them, it does not matter if their child died in circumstances that are completely different – they understand. You may find you have a certain shorthand with them, and not having to explain is liberating.

You may feel the value of liberation: grief is exhausting. It seeps in to your pores, into your bones. The simplest of tasks can seem challenging; your memory unreliable, turning even the smallest thing that makes your life a tiny bit easier into a precious gem.

You may feel like you will never be happy again, never smile again. Indeed you may feel like you do not want to be happy again, nor smile again – or that you deserve to.

The feeling of guilt can feel all-encompassing. The knowledge that rationally, you know you have no reason to feel guilty – that you did everything you could, and would have done more, if only, what if – is irrelevant.

I still feel like I failed my child. I did not keep him safe. Even though I know, rationally, if he had not been born when he was we both would have died.

Emotional torment.

And the anger – oh, the anger. So raw, so visceral. Anger at the world in general, at the hand life has dealt you, at the world being so bloody unfair. Anger at those who embellish and become melodramatic over trivial everyday annoyances (no, spilling your coffee is not the worst thing ever.)

Anger at those who seem not to appreciate their children, take them for granted. But in the same breath, thinking you are glad that other people are blissfully unaware of such heartbreak.

More than a year on after Hugo died, I have learned to feel happy again. It is a different sort of happiness than before. A happiness borne out of different priorities and perspectives.

But that does not mean that I am better, or that my life is better. No, not by a long shot. I still get bad, low, devastating days as a result of a trigger, or of nothing at all. Those days can make me feel like I am back to the beginning, back to the darkest days, all my progress out of the window.

I have to remind myself I am not back at the beginning, that it is the fault of the path of grief. Grief does not progress in a straight, orderly line. It is a mass of intertwined squiggles that make no sense, with no end.

And that is part of the reality. Grief has no end. There is no better, only different.

You may discover within you a strength you wish had lain forever dormant. That strength comes from intense love, intense pain, and it can take on the world.

I am not going to tell you what to do, how to grieve. I cannot do those things, because while we may share a similar experience in common our individual journeys are so very personal.

But I would like to share with you a few points that have worked for me, take them or leave them as you will:

  • One day at a time.
  • Don’t expect too much of yourself.
  • Whatever is right for you, whenever is right for you.
  • Find people you can trust to confide in, or just to listen.
  • Be open and honest with your partner about your feelings, no matter how much it may cause extra tears – you need to be honest so you can support each other.
  • Find a way to express your grief – whether that is drawing, writing (on a blog or in a private journal), talking to someone, raising money for a charity.
  • Try to be gentle to yourself, and take time for self-care. Grief is exhausting, meaning you need to find ways to recharge your batteries.
  • Take time for your grief – ignoring it does not make it go away (as I discovered to my cost).
  • Being selfish when you need to be is acceptable – often life after loss is about personal survival.
  • There will be days when just getting out of bed is an achievement – and there will be days where you feel you can take on the world.
  • Bad days can come from nowhere.
  • You are not a bad person. You deserve love and happiness, even if it may take time to return, take a different form and be fleeting.
  • There is no ‘normal’, no better. Just different.

You will get there, Mama.

You can survive.

We are all here for you.

With love,

Hugo’s Mummy, Leigh xxx

Sunday Thought July 26, 2015: Two Perspectives, One Half of the Same Whole

At first for today’s Sunday Thought I was going to choose one or the other of the pictures below. Both appeared on my Facebook timeline this week, and summed up perfectly my feelings.

After a while, I realised I couldn’t choose between them because they are two halves of the same whole – so I chose both:

AngelaMillernew

For anyone who thinks that grief has a time limit, or that you ‘move on’ from the death of your child. There is a Hugo-shaped hole in my heart that will always remain. I feel the ache from that hole every day, I feel the pain of the void his absence has left in our lives. I feel the frustration when people don’t know what to say for the best, or do not mention Hugo.

But – oh, I feel such a proud rush of love when people do mention Hugo. When they admire him for the gorgeous, feisty baby he was. When they observe the work that has been done in his memory.

That is because Hugo’s Legacy comes from that pain, that void. As Angela Miller says, the love that oozes from it gives me the power to use my experiences to help others, to make others sit up and listen, to challenge.

To change the world.

MeganDevine

This is something I have difficulty with.

Since Hugo died I have discovered the very best of people: people I knew before, some I have met since. Such kindness, empathy, warmth.

Through my blog I have made the most beautiful friendships. Some are fellow loss mamas, others are not. We share in common a passion for sharing with others our feelings and experiences through words, a determination to give comfort to others, reassure them they are not alone.

Through social media I have made the most wonderful friendships. Professionals from all fields. Kind, compassionate, determined people willing to listen and take account. People willing to help me get involved, use my skills, collaborate to make a difference.

Through my blog and social media I have been given fantastic opportunities. Opportunities to get dressed up, have fun, be me; opportunities I never thought I would have.

Opportunities I never thought I would pursue, or do: speaking in front of large audiences, and with a clear voice too. The power of that love for Hugo gives me the strength.

Many beautiful moments.

All opportunities that came because Hugo died. Yes, these opportunities have come as a result of a lot of hard work, but the motivation for the effort comes back to the same reason.

Friendships, relationships, opportunities. But no son. No offence, but there are no prizes for guessing which I would prefer.

While I have a better sense of comfort with the opportunities I have been offered in the past year, I doubt it will ever sit well with me.

I would give it all back to be another mummy with the everyday trials and tribulations of caring for an energetic, willful 13 month old little boy. Who knows what our lives would have looked like in reality, but it would have been full of beautiful moments. Beautiful moments of a different sort. The wonderful moments of motherhood, the frustrating moments.

But what is done cannot be undone.

The way forward is to move forward. Reflect on the beautiful moments I had during those 35 precious days with my beautiful boy. Wish for more, so many more; no amount of time can ever be enough.

Hold on to those beautiful moments, and look to the future. Forging more wonderful friendships, generating more opportunities, creating more beautiful moments.

Hugo will always be a part of them.

Blue and Thinking of You

Blue:

The colour of the sky

The clear expanse of sea

The colour of your hat.

It makes me think of you.

 

Blue:

The colour of a mood, they say:

Sad, melancholy, bereft,

Low.

 

Sad, melancholy, bereft, low

Yes.

But I do not call it ‘blue’

 

Blue is your colour

My darling

It makes me think of you

 

And how can I be blue

When I am thinking about you?

 

I am sad, bereft, lost,

Low

When I think about how you are not here

The gap is as big as the sky is blue on a clear summer’s day

The sadness as deep as the all the seas put together

My sorrow is infinite as I hold the little blue hat you once wore.

 

My gorgeous boy –

Your eyes peeking out from your hat

That perfect nose

Your head of dark hair.

 

I hold your little hat

That you once wore

It connects me to you

It still has your smell,

Just.

 

I will never know if your eyes would have been blue

Like your daddy’s.

You will never see a clear blue summer’s sky

Or play beneath it.

You will never see the clear blue sea

Or play in it.

 

This makes us sad, melancholy –

Yes, blue.

And that is because

I love you.

20140327_124730

 

mumturnedmom

I Wish

I wish you were in my tummy for the full 40 weeks.

Or if not, that you could have come home with Daddy and me.

I wish we had thousands of photos of you tracking every day of your life, every milestone, every special moment.

I wish I was able to watch you grow.

I wish we were able to watch that feisty personality grow, develop, form you from baby to little boy.

I wish I were able to sing you to sleep.

I wish I were able to give you a bath, watch you play with your toys and you insist on having a bubble bath punk hairdo.

I wish we were able to have cuddles, so many cuddles, breathing in your smell.

I wish my house was full of your things, clothes, nappies, wipes everywhere. Toys strewn across the house.

I wish I had more than my handbag to think about when I leave the house.

I wish I could see which new food you wanted to try next. Which you spat put.  How much you just chucked on the floor.

I wish I could see how you got on with Fat Cat.

I wish I could take you to the park.

I wish I could read books with you.

I wish I could be running around after you, and celebrate you taking your first steps.

I wish I needed eyes in the back of my head as you took every opportunity to show off your walking.

I wish I could try to have to figure out what your babbling meant, marvelling at you trying to form words.

I wish I could splash in puddles with you.

I wish I could comfort you when you needed that.

I wish I could see the look on your face when you saw something that excited you.

I wish I could see what most interests you.

I wish you, me and Daddy could be a normal family.

I wish I could feel your arms around my neck, your head on my chest.

I wish I could stroke your beautiful dark hair.

I wish we didn’t have to visit you in the cemetery.

I wish I didn’t have to think when buying you a present whether it will withstand the elements outside.

I wish you didn’t have to be born so early.

I wish there had been a magic cure to save you.

I wish I could cuddle and tickle you and hear you giggle.

I wish I could see you and Daddy playing together, forging a special bond.

I wish life was not so unfair.

I wish I did not have to talk about you in the past tense.

I wish I did not have to put up protective barriers around myself, because since you died I have been broken.

I wish I did not have this leaden weight in my chest.

I wish I did not have this darkness in my mind.

I wish I did not have to see symbolic signs of you everywhere, because real, tangible signs exist of your real, living presence.

I wish I did not know such pain, such sorrow, such longing.

I wish I knew such burning love, a Mother’s love that I could express to a child in my arms.

I wish I could cover you in kisses.

I wish I did not have to wonder what you would be like in the future.

I wish I did not have to miss you, Hugo.

I wish.

20140320_153034

HSJ Patient Leaders – Changing the Way Health Services Perceive Patient Experience

Yesterday I travelled to Birmingham for the announcement of the very first list of Patient Leaders by the Health Service Journal (HSJ) – I am honoured to be included in it for my work with Hugo’s Legacy and #MatExp.HSJ

It’s a secret I’ve had to keep for about a month, because the list was under embargo until last night.

That meant I had no idea who else was included on the list, which numbered just 50 individuals. Discovering who else is on the list underlined for me how much of an accolade my inclusion is.

Individuals I admire greatly for their tenacity and determination in using their own experiences to improve the care of others – such as Dr Kate Granger, Alison Cameron, Michael Seres, James Titcombe and Adam Bojelian (Adam sadly died earlier this year; I was pleased to meet his mum Zoe), to name just a few are included in the humbling list.

We are a diverse group, but we share in common the passion to use our personal experiences to campaign, raise awareness and educate to help create better services and safe care for others. We also share a vision for patient experience to be meaningful, given genuine credibility, never to be a tokenistic exercise to ‘tick a box’.

As Giles Wilmore, NHS England director for patient and public voice and information points out in his introduction, the NHS hasn’t always been good at understanding the experience of care from patients’ perspectives. However, as the publication of the list shows the NHS is learning to embrace patient experience, and the value that involving those with lived experience can contribute to improving patient care.

The list is so important, as HSJ editor Alistair McLellan said as part of his opening speech because:

and…

Last night’s event had a inclusive, positive atmosphere with a sense of mutual respect. I enjoyed catching up not only with friends, but also meeting people in real life whom to date I’d chatted to online. Thank you, HSJ and NHS England.

Me at the event, holding a copy of the supplement.

Me at the event, holding a copy of the supplement.

Hugo’s Legacy began about a month after his death, with the publication of my HELLP Raise Awareness post. While I thought I knew so much about pregnancy, I had never heard of this rare pregnancy complication that nearly killed me, and that took the life of my much-wanted baby. Nothing could be done to change what had happened to me and to Hugo, and I wanted to make sure other women were aware of the signs and symptoms of this little-known condition. Women and babies can and do die from it, meaning awareness is vital.

The main focus of Hugo’s Legacy is communication: while clinically the care we both received was exemplary, there were several incidences where additional distress could have been avoided.

Me and Hugo

Me and Hugo

St George’s Hospital, which is where Hugo was born and spent his life has been wonderfully receptive to my feedback. They invited me to the neonatal unit’s bereavement meeting to share my ideas for improving how staff engage with parents who have lost a baby. As a result, they have changed how post-bereavement counselling is offered, and are printing the simplified information I designed for them. I hope the information provides some small comfort for parents leaving hospital without their baby.

The unit knows that despite their best efforts, sadly not every baby will be able to go home with their proud and grateful parents. They are determined to get it right for we bereaved parents. This is incredibly heartening in the context of baby loss remaining.

Since Hugo died, I have given talks at various study days to educate health professionals about HELLP syndrome, birth trauma, parenting a premature baby, and life after the death of a baby.

Working in hospital communications, my experiences as a parent and patient from the other side of the fence were fascinating. I feel privileged to be able to add my professional skills to my personal experiences to help make a difference to other families by making stressful, heartbreaking situations even a tiny bit easier.

Sadly, not all follow the excellent example set by St George’s and other hospitals and organisations with whom I have worked.

Various interactions with individuals and charities have upset me because of the suggestion that there should be a time limit before bereaved parents or those who have experienced birth trauma get involved with projects related to their experience. Their reason is to make sure the parent is ‘ready’, and because it is ‘almost impossible’ to have a balanced discussion about it.

As I have written in other posts, such an attitude is patronising and insulting. It is also discriminatory to confer an arbitrary policy against a group of people.

Any organisation – whether NHS or a charity – needs to remember that everyone is an individual. They need to remember that yes, reliving traumatic experiences when telling one’s story is draining and upsetting, but it can never as be as bad as when it was experienced for real. They need to bear in mind that for some, making a positive contribution helps them move forward (not move on, a crucial distinction) with their lives.

Rather than apply arbitrary policies, organisations and charities need to apply the concept of reasonable adjustments to ensure the needs (whether emotional or physical, or both) of those willing to help are met to enable further engagement.

A few months ago I was asked who is my favourite radical from the past century, and why. Rosa Parks – the woman who defied the segregation of the US Deep South and refused to give up her seat on the bus for a white man. She knew what was right and acted accordingly.

While Hugo’s Legacy has been motivated by my sense of survivor’s guilt, a sense of what is right also spurs me on.

Women such as me constantly experience discrimination. The discrimination is not comparable to the inequalities of segregation, but it shares similarities in that a group of people are excluded because of outdated, irrational, and inaccurate beliefs, decisions, and policies.

I want to make sure our experiences are viewed as valid, our voices heard, our views respected, our babies’ memories remembered.

I hope HSJ Patient Leaders helps achieve this vision. I hope it helps increase awareness of Hugo’s Legacy and of #MatExp still further, for the benefit of families.

I also hope my inclusion in the list demonstrates to others that individuals can make a difference. As an extension of that, I hope the list helps embed patient experience in NHS organisations across the country. By collaborating and respecting the contributions patients have to make we can make a real difference, as the wonderful and very wise Kath Evans wrote in a tweet, quoting Neil Churchill: