My Half-Year Evaluation: Have I Thrived?

Half-year Evaluation for Leigh Kendall

Background

At the end of 2014, Leigh reflected on the events of that year. She acknowledged that she had survived the worst thing imaginable – the death of her much-wanted, much-loved son, Hugo.

You recognised that 2014 had shown you that the unexpected can happen, your dreams can be ripped to shreds. You surmised that while we can never know what is around the corner, we can still plan, prepare, and dream.

To that end, you identified three main goals:

• To continue to grow Hugo’s Legacy;
• To maintain your physical health;
• To improve your emotional health.

You summed up your aspiration for 2015 using a quote by Maya Angelou: “…to not merely survive, but thrive; and to do so with some passion, some compassion, some humour and some style.”

Leigh articulated rough plans around continuing her passion for Hugo’s Legacy (which encompasses compassion); to expand on her writing; to allow herself to indulge in her humorous and stylish sides – the things that make her, her.

Performance

Leigh has difficulty acknowledging her own progress and success. A large part of this is that she, of course, wishes that she still had Hugo in her arms; that she had nothing to campaign for.

However, she must recognise that six months after setting her year-long goal she is doing very well indeed.

Some highlights include:

• Hugo’s Legacy is growing bigger all the time. #HugosLegacy trended on Hugo’s first birthday, and clinicians have remarked how Hugo’s story has prompted them to reflect on their own practice, for example. Leigh is consequently increasingly recognised as a leading parent voice in neonatal and bereavement care.
• Leigh has maintained her physical health by regular exercise at the gym, and running and walking. However this has slipped in the last month or so since the closure of her gym and a return to work.
• Leigh’s emotional health has seen a marked improvement since December, thanks to intense psychotherapy sessions. These sessions helped reassure her, in her own words, “that I am not bonkers”, that the intense feelings she has experienced are natural responses to the events of 2014; to acknowledge that grief is forever meaning it needs to be faced however difficult that is, in order to find a way to live with it. At the beginning of June, Leigh felt as ready as she ever would be to return to work. This was a big step, and one that Leigh should be proud of.
• Leigh has expanded her writing – achieving an ambition of becoming a Huffington Post writer, as well as being a finalist and on the shortlist of major national blogging awards.
• She has published posts showing her lighter side, and about her love of style reflecting that while the events of 2014 may have changed her irrevocably, there are things she can return to that help her realise life is worthwhile.

Conclusion and recommendations

Leigh is indeed not just surviving, but thriving, with compassion, passion, humour and style.

She needs to make sure she continues to care for herself. Wanting to change the world is noble, but she must also remember to rest when her mind and body tells her to do so – burning out will help no one. Scheduling regular self-care time (including physical exercise) is vital towards maintaining her significant emotional and psychological progress.

That said, Leigh must remember that irrespective of how much progress is made, there is no cure for grief. Bad days will still haunt her, and as gruelling as they are they must be endured. She must remember that it is acceptable to hide under the duvet sometimes. She must never forget that living with grief and trauma is exhausting, meaning that self-care time is non-negotiable.

Leigh should be very proud of her progress so far in 2015. Bearing in mind the points above about self-care and balance, she should continue to thrive for the rest of 2015 and beyond.

Who Am I?

Who am I?

It is not an obtuse question. Nor a trick one.

Yes, I am Leigh.

I am a woman.

I am Hugo’s Mummy.

I am a partner, daughter, sister, niece, cousin, friend.

I am a writer, blogger, communications professional.

But who am I?

We all of us evolve through the course of our lives. Our personalities change, as do our tastes, interests, goals, outlook on life.

For most of us, this evolution is gradual. There is rarely some great ‘ta-dah’ reveal moment for we mortals, unlike say, Madonna unveiling a new image to tie in with the release of her latest album.

Most of us won’t have a life-changing event. A date in the diary that they can pinpoint where everything changed so utterly, completely. No knuckle-dragging, slow evolution.

Instead, instantaneous metamorphosis.

Being admitted to hospital. Caring for a very premature baby. That baby dying in my arms.

These events transformed me.

But in to what?

I am still Leigh, a woman, Hugo’s Mummy, a partner, daughter, blah blah blah.

Perhaps the difference could be the addition of a word such as ‘fearless’ to each of those descriptions.

A new-found confidence, liberation as a result of a brush with death. The knowledge that the worst has already happened has revealed that inner strength. An ability to celebrate who I am and be proud of that, warts and all.

But this Leigh is a woman full of contradictions, too: you could also add the word ‘fearful’. The knowledge that things that can go wrong, badly wrong. Those things no longer happen to ‘other people’: they happen to you, as well.

And that often, there isn’t a single thing you can do about it.

I am positive, but cynical.

Fearless, frightened.

Liberated, anxious.

Happy, sad.

Passionate, relaxed.

Angry, calm.

Hard, soft.

A dreamer, yet realistic.

An abundance of conflicting,  juxtaposed emotions existing within me all at the same time.

Today, I stood at the top of a hill. Basking in the sunshine. Relishing the breeze. Enjoying the moment.

I closed my eyes, sensing Hugo around me in the breeze, in the sunshine, in the butterflies, in the flowers.

Sadness seeping in to happiness, joy, beauty. Every day.

Who am I?

I am Leigh, a woman, partner, sister, daughter, friend.

Mother.

Someone who is trying to come to terms with the life thrust upon me. Knowing that this is forever,  there is no getting off this train.

Looking ahead to the future, but taking it day by day.

Today, sanguine. Tomorrow, who knows?

Complex, conflicted.

Complete yet incomplete.

That is who I am.

Sunday Thought June 28, 2015: A Positive Outlook

Since Hugo died, a number of lovely people have observed that I seem to be so strong, so brave, so positive.

It often feels like a false modesty to say I’m not.

Maybe I am, to a certain degree: it probably would have been much easier to have taken to my bed, stuck my head under the duvet and waited for everything to be better again.

It wasn’t about making a conscious decision, though.

I had to carry on.

I had to keep breathing.

I had to get up every day.

I had to write, to campaign, to channel my anger and energies into something constructive, positive.

I have never forgotten, not even for a moment, that I could have died. Nor can I ever forget that Hugo, my precious little boy who gave so much to the world in his 35 days, is no longer here.

So I keep going.

A positive outlook doesn’t mean someone is ‘positive’, though.

To see someone seeming to turn a personal tragedy or trauma in to a positive and thinking that makes them a ‘positive person’ does them a disservice.

Why?

Because people are multi-faceted.

Because to say someone is ‘dealing with things’ positively, while intended kindly and as a compliment forgets empathy, the vital stepping for a moment in to someone’s shoes.

It makes assumptions about what that person’s life is like.

It forgets to ask questions.

It forgets life is never simple, never black-and-white.

It disregards the fact that life after grief and trauma is like riding waves – sometimes the sea is calm, tranquil perhaps. You float along.

Sometimes the sea is rough, black as ink, throwing you around as if in a spin cycle threatening to drown you, sharks circling beneath you just waiting for you to give up give in and you will sink down down down deeper deeper deeper until….

You get the picture. The point is the sea is always there.

You sink or swim, to an extent.

You can prepare all the life buoys, dinghies, boats, transatlantic liners if you like to help keep you afloat.

It is a constant fight.

There are times when I thought the storm would never end.

I am inclined towards positivity, yes. The glass is usually half-full. Trauma shows you what is most important.

That means you are unlikely to find me engaging in negative activities – gossip, sniping – or simply things I don’t enjoy.

Life after is often about survival. Finite supplies of energy.

Focusing on the positive gives me more energy to survive, and even to thrive.

But please remember: if you see a bereaved person with a smile, a focus, a purpose, seeming happy even. Try not to tell them they’re doing well. Ask them how they are doing, and listen. Reflect that a positive day might be that day, or even that part of a day – it is not necessarily representative of their life.

While I may seem to be positive on the whole, there are times I feel anything but. I know I am not alone in that.

The world would be a better place for more empathy, understanding, listening, reflecting.

A far more positive outlook.

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

What I Want The National Maternity Review Team to Know

The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

That Language Matters

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

In Hugo’s memory.

Sunday Thought June 14, 2015: Post-Traumatic Growth

Sunday morning seems to be a good time for resonant posts to be shared on Facebook; posts that prompt lots of thought and make me a bit emotional.

Last week was the video of Alison Cameron’s speech, and today it was this post about post-traumatic growth (PTG). To quote the article, PTG is “the phenomenon of people becoming stronger and creating a more meaningful life in the wake of staggering tragedy or trauma. They don’t just bounce back—that would be resilience—in significant ways, they bounce higher than they ever did before.”

This was the part that made me especially emotional:

The term PTG was coined in 1995 by Richard Tedeschi, Ph.D., and Lawrence Calhoun, Ph.D., psychologists at the University of North Carolina, Charlotte. “We’d been working with bereaved parents for about a decade,” Richard says. “They’d been through the most shattering kind of loss imaginable. I observed how much they helped each other, how compassionate they were toward other parents who had lost children, how in the midst of their own grief they often wanted to do something about changing the circumstances that had led to their child’s death to prevent other families from suffering the kind of loss they were experiencing. These were remarkable and grounded people who were clear about their priorities in life.”

None of these parents, Richard stresses, believed that their child’s death was a good thing. They would have given up all their newfound activism, insights and altruism, their re-ordered sense of what really matters in life, to have their child back. “The process of growth does not eliminate the pain of loss and tragedy,” Lawrence says. “We don’t use words like healing, recovery or closure.” But out of loss there is often gain, he says. And in ways that can be deeply profound, a staggering crisis can often change people for the better.

Unlike the parents described in the article, nothing could have been done to have prevented Hugo’s death. However, as I have said numerous times, there is no ranking system. I might not be able to prevent other families suffering the same kind of loss (while I have been working to raise awareness of preeclampsia and HELLP syndrome, they are both thankfully very rare), but I can help prevent other families suffering the kind of additional, avoidable pain and distress mine experienced because of a lack of appropriate support.

That is what Hugo’s legacy is all about.

Me and Hugo

I love that the quote states they don’t use words like ‘healing, recovery, or closure’. In my view – and shared by many other bereaved parents – that these things are not possible.

We know that nothing will or can bring our children back. Things may, over time feel ‘better’ but they will never ‘be better’. We may seem to have ‘recovered’ outwardly, but the grief is always lurking beneath the surface, ready to re-emerge without warning. There is no such thing as ‘closure’ – Hugo will always be missing from my life, I shall always love him and miss him with all my heart.

Nothing can ever replace him. I too would give up all my insights and altruism to have him back in my arms. No hesitation. In a heartbeat.

That is why comments such as I described in this post are so very hurtful. That comment is just a representative example. It demonstrates how we need to look differently at grief, trauma, and how we (the wider ‘we’ – culture and society) work with those who have experienced grief and trauma and work together constructively, collaborating and learning from each other to make a positive impact on the world.

I will leave the final word with this powerful quote from the article:

“[PTG] promises,” he writes, “to radically alter our ideas about trauma— especially the notion that trauma inevitably leads to a damaged and dysfunctional life.”

My philosophy.