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.

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.

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.

33 thoughts on “Have Courage, Be Kind: This Is Forever

  1. lovedandfavored996 says:

    Thanks for just writing this whole thing!! I’m about 10 months in and it’s different like you said. Not as raw and I’m finding I want it to still be raw- to be able to have the excuse to cry whenever in public or private because ‘she just lost her baby’. Now, it’s as if I am living the life I did before I was pregnant except with loss in the middle of my soul and it’s like I’m only partially living. The invisible sadness of the soul.

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    • Leigh Kendall says:

      I’m so sorry for your loss. I understand what you mean – you don’t want it to be ‘ok’, ever. How can it be? And life goes on around you. The invisible sadness of the soul is a very good way to express it. Thank you for visiting xx

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  2. pottymouthedmummy says:

    You have so much courage, just oodles and oodles. You inspire me so much and I think of you so much and Hugo and your story. You are a wonderful woman Leigh, and though I wish this hadn’t happened to you, I am thankful for your blog and writing in my life. You are wonderful xx

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  3. wrymummy says:

    I’m so sorry for your terrible pain and grief. Your words are so eloquent and moving and must be a great support to other mums suffering as you do. You must be kind to yourself, as you say. Best wishes, Jess x

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  4. Mary @TheHeartyLife says:

    Oh Leigh such a hard thing to carry! I hope you were able to do something special for him.. I know too well the weighty and exhausting burden of grief, I just want to feel rested, feel light again and not feel so vulnerable!
    He was such a gorgeous little boy.. x

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    • Leigh Kendall says:

      Thank you Mary, Hugo was such a gorgeous boy and I miss him so much. Grief really is such a burden isn’t it – I wish it could go away. But I know it won’t, and it can’t. It sucks xxx

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  5. Tara says:

    Ah Leigh, I really hope you can take your own advice, although I know it’s hard. After the first anniversary was the hardest time for me (although obviously completely different situations) but thankfully I finally went to counselling which was my way of being kind and taking care of myself. I hope you are still getting the help you want and need. xx.

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  6. Mrs H says:

    Leigh, you always write about something so raw and painful in such a beautiful and eloquent manner. I can’t imagine how exhausted you must be by it all. You need to be kind to yourself. You are so courageous and wonderful. And your writing helps and inspires so many. But you need to help you too. Go easy on yourself. Be kind to yourself. And show yourself you care. Hugs Mrs H xxxx

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  7. caroline326 says:

    I definitely relate to the exhaustion you described so eloquently. For me, the fact that this grief is forever is something I knew, but is now sinking in after passing most of the ‘firsts’ after loss. Sending lots of love!

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  8. Chrissie@muddledms says:

    You are a very special person and you deserve the kindness for yourself that you give to others. The moments you captured are so precious

    Always have hugs for you. Keep on fighting – you are winning x.

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  9. SingleMotherAhoy says:

    I can’t even imagine, Leigh. While other parents write “one year on” posts about their child’s first birthday, you are left with something unimaginable to deal with – as well as thoughtless, throwaway comments and poor treatment.
    You are right to be angry. How you are not bitter and twisted is truly beyond me but a true mark of the sort of woman you are.

    I remember the comment you made at Brit Mums, when you told someone what your blog was about an she replied, “that’s a bit of a conversation stopper.” You manage to write eloquently and beautifully about possibly the most heartbreaking subject of all – and you do it with dignity. You are very much not a conversation stopper but a conversation starter. You talk about something we are all scared to even think about, none of us wants to discuss. Everyone wants to think that all you need is hope and love because the alternative is what you are living and you describe it so well, you scare the crap out of all of us. You give a voice to the thousands of parents who are going through the same as you but don’t have the words to express it. Of that, you should be immensely proud. I hope you can find some peace xx

    Liked by 1 person

    • Leigh Kendall says:

      Thank you, Vicky, that is such a wonderfully kind comment. I write about Hugo because it helps me, and I am truly honoured that it helps others, too – both those going through a similar experience, and to help others to understand. Blimey I’ve never thought I was scaring people – but I guess you mean it’s the realisation of how fragile life is, and to not take things for granted.

      I’ve gone through stages of feeling bitter and ‘why me’ – but then I figure there is no point, it doesn’t change anything. Hugo’s death is intrinsically linked with the thought that I nearly died myself – bitterness is a waste of emotional energy when I have so much else to deal with. xxx

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  10. larabeeuk says:

    Have been thinking about you today Leigh, somewhere out there, shining bright is a very proud star, proud of the way his Mummy & Daddy are coping without him, proud of the way they have taken the strength he left them when he had to go and most of all so very proud that you were his Mummy, even if it was for a short time. Stay strong lovely lady, another milestone is done. Keep fighting. Much love to you, Leandra xxx

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  11. frankieslegacy says:

    Leigh, I couldn’t have put it better myself if I tried. As a fellow empty armed mother I agree with and identify with EVERY word you have written. Like you, I too am exhausted beyond belief, not only because of losing my precious Frankie but because of dealing with so much death, loss, death, loss, death loss since then.Always be kind to yourself, I have discovered to my detriment that while it is a good thing and a wonderful thing to use one’s experiences to help others, you will never, ever truly be able to help anyone else unless you are kind to yourself and help yourself first. I thought that if I worked hard at helping others that would make me better and okay again, instead it had the opposite affect, and made me feel worse, especially as I seemed to be thwarted at every turn by yet another death and more loss to deal with. That said, I have made a promise to Frankie that I will do my very best to live life to the full, however hard that will be at times for me, and I intend to honour and keep that promise….somehow. Sending you lots of love and hugs xxx

    Liked by 1 person

    • Leigh Kendall says:

      Grief can feel like a hamster wheel sometimes – so many things to cope with, trying to come to terms with it all…kindness towards yourself is really important, yet hard to do. I am sure you will keep your promise to Frankie to do your best to live life to the full – I made a similar promise to Hugo – there needs to be a balance though, and recognise when you need to just stop (one day I might learn that myself!) xxx

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  12. betsy says:

    this is fantastic. I’m sorry you have it to write about, and at the same time, I’m so glad you put it out into the world.
    I have a dear friend who experienced pregnancy loss. she now acts as a support person and advocate, would you mind if I share this post with her?

    Liked by 1 person

  13. Emma says:

    I think, maybe, getting all of this out of your head and into tangible form, words on a screen, is one good start at being kind to yourself. This is forever, without a doubt, and even though I’m on my own ‘forever’ path I cannot imagine for a second how horrendous this must be for you. All I can say is that your words are familiar. And send you love. X

    Liked by 1 person

    • Leigh Kendall says:

      You’re right, Emma. Writing out my thoughts is helpful in trying to sort out the thoughts – and helpful towards me understanding how I need to be kind to myself. This is forever, and I am exhausted. Thank you for your kind comment, sending you love too xxx

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