Grateful for Being Not Dead

Today, I am grateful for being not dead.

Today marks two years (almost to the minute as I type) since I popped out to my routine 24 week midwife appointment, with getting some decent heartburn medication on the top of my list of priorities.

Two years ago today I discovered that my heartburn was actually my liver on the verge of rupture. The weight I had been gaining was actually fluid retained because my kidneys were in difficulty. The strange can’t-put-my-finger-on-it-to-say-what-it-is feeling was actually blood pressure that was so high I was at risk of a stroke and seizures.

I had HELLP syndrome and preeclampsia.

Me in hospital.

Me in hospital.

I remember the day after Hugo was born being in my maternity high dependency room. One of the anaesthetists who had cared for me during the surgery came to visit me to see how I was, and to remove my central line. The removal of the central line didn’t necessarily require an anaesthetist, so the visit was on account of my illness being the wrong kind of special, and on account of the anaesthetist being a great guy. While so many memories of those days is hazy, I remember him remarking about how cheerful I was.

I can remember replying that I was happy because my baby had been born alive when it was feared he would be stillborn. I was happy that I had seen, touched, spoken to Hugo. I was happy there was hope.

Oxytocin, that happiness hormone that kicks in at birth was probably a factor too. Oh, and I was flying high on lovely lovely morphine.

While it took me quite a while for the severity and cause of the illness to really dawn on me and sink in, I must have realised at some primal and subconscious level because I also said I was:

Happy to be alive.

There is so much that has happened between that day and today that is utterly, unspeakably awful. So much I wish had not happened, and that I dearly wish could be changed.

Hugo being born way too early, and dying 35 days later are the main two things I wish had never ever happened.

My beautiful Hugo.

My beautiful Hugo.

These two events are so inextricably intertwined with my illness – Hugo had to be born when he was to save my life, and to give him a fighting chance – I so often feel guilty not just for  feeling grateful for being alive but for simply being alive.

Me being alive when my son is not is against the natural order of the world. Or how the world should be, at least.

Life, as I know all too well, does not always play fair.

I try to remember there is little point in raging about what is fair and what is not fair.

To accept what is.

Mummy, Daddy, Hugo

Mummy, Daddy, Hugo

And this is a fact:

I could be dead.

And I am not.

Other women who had HELLP syndrome were not as fortunate. Women like Leila, who suffered a seizure, and went in to a coma. She had a bleed on her brain, and never woke up. Women like Andrea, who died of multiple organ failure after her twins were born. Women like Brittany, who had a seizure after pushing out the placenta; sadly tests revealed she was brain dead. Women like Joan, who died of post-partum pre-eclampsia. Women like Sally, who died of a brain haemorrhage. Women like Lauren, and Christie who died of liver failure.

So, here I am, alive and feeling grateful to be here.

Putting aside fantasies about sacrificing my life for my son’s, realistically I know that if I wasn’t admitted to hospital when I was we both would have been dead within a couple of days.

One significant point of gratitude is that if I was dead, I would not be able to honour Hugo’s memory through his legacy.

So while grief and the emotional difficulties that come with PTSD is not something I can switch off, I can find a way to make those feelings coexist with gratitude.

I feel like I have to.

What’s the point, otherwise?

Saturday is Hugo’s second birthday. Last year, for Hugo’s first birthday #HugosLegacy trended on Twitter – it was incredible!

Hugo’s daddy and I have been talking about how to mark the occasion this year.

We’re going for gratitude, for the reasons outlined above, as well as the 35 precious days we had with Hugo.

We’d love if you would join in over the next few days, and on Saturday in particular as a celebration of Hugo’s life. Let us know what you are grateful for.

You might like to say what you are grateful for in a comment on this post, or on social media (please use #HugosLegacy so we can find them easily).

What you are grateful for might be none of my or anyone else’s business, so you might like to think about it privately. That’s fine too!

I am grateful for many things, mainly being not dead.

How about you?

23 Comments on Grateful for Being Not Dead

  1. Hester
    February 21, 2016 at 9:30 am (6 years ago)

    Hi Leigh,

    My son died 5 years ago just one day after birth (@27 wks + 2), my feelings were and are so exactly the same as yours! I could have written the article that you wrote! Now i have a healthy 3,5 year old boy and am 37,5 weeks pregnant with a girl! Am so happy to be alive to live this! Thanks for your inspirational story! 😘

    • Leigh
      February 24, 2016 at 8:18 pm (6 years ago)

      Hi Hester, I’m so sorry for the loss of your son. All the best with your baby girl – thanks for your kind comment xxx

  2. Lynn Jones
    February 21, 2016 at 6:50 am (6 years ago)

    I am grateful for many things a wonderful supporting family loving parents lovely nieces and nephews and my lovely great nieces and nephew everyone of them unique in there own special way and yes Stephanie you for being a special kind of person l love you all with all my heart you all make me proud each and everyone of you xxxx x. Xxxxxxxxxxxxx

    • Leigh
      February 24, 2016 at 8:18 pm (6 years ago)

      What a lovely comment, thank you xxx

  3. Tracey Jackman
    February 20, 2016 at 11:39 pm (6 years ago)

    Thank you so much for sharing with us. I heard you speak at a conference earlier this year and have read this today. Both times I have been so touched by the things you have shared. Keep going! #Hugoslegacy is precious as his life and yours teach us what it is to persevere, be compassionate and remain grateful amidst pain. I am genuinely grateful for you and other mothers like you who courageously speak out to honour the lives of your precious children while also giving the world important lessons to learn. Thank you.

  4. Someone's Mum
    February 20, 2016 at 2:17 pm (6 years ago)

    Oh goodness. I can’t imagine what you must have been through, how you have come to the point where you can feel positive and truly feel happy again. The complex emotions relating to your illness, your son, and your hope for the future must be so painfully connected. But you are so, so brave to keep writing about it and your son truly does leave an amazing legacy as his story, and yours, will spread awareness and help other families. You have my thoughts and well wishes.

  5. Bek Dillydrops
    February 20, 2016 at 1:53 pm (6 years ago)

    This is such a great idea. I shall be sharing this for Hugo’s Legacy. You are amazing! I’m really sorry for your loss. x Today, I am grateful for my little dog to keep me company while I work. x

    • Leigh
      February 24, 2016 at 8:19 pm (6 years ago)

      Thanks Bek. Your dog is a lovely thing to feel grateful for! xxx

  6. Ian Hunter
    February 20, 2016 at 11:56 am (6 years ago)

    I am grateful for all the people I have met and the things I have learned since Hugh was born nearly four years ago. It hasn’t been easy and I so wish he didn’t have the challenges he faces, but I am a better, stronger person for all we have faced as a family. #hugoslegacy

  7. Melissa McGovern
    February 20, 2016 at 10:48 am (6 years ago)

    Grateful for sleep today xxx thank you for a lovely piece and so sorry for your loss

  8. Kyles @ Pickles and Pords
    February 20, 2016 at 10:29 am (6 years ago)

    I cried so much reading this post, for you and your husband, and darling little Hugo. I can’t even begin to imagine what that was like for you. Thank you for sharing. I am grateful for my two beautiful children, for my third on the way, and for my husband. Reading your post has made me want to hold them all a little closer, and so I am grateful for your words too. Anything that reminds us of how precious life is truly is a gift. What a wonderful legacy.

    Happy birthday Hugo x

  9. Sally Gibson
    February 20, 2016 at 10:03 am (6 years ago)

    Although I was never as poorly as you, I suffered with pre-eclampsia with both my pregnancies. I am forever grateful for the weeks of enforced bed rest & hospitalisation, medication, monitoring and medical attention which allowed both of my sons to be born healthy. Even more grateful for the care I had after a massive post-partum haemorrhage when I too nearly died. When I celebrate my eldest son’s birth, I, like you, spare more than a passing thought to think ‘I’m glad to be alive’.

  10. Laura evelyn bee
    February 20, 2016 at 6:31 am (6 years ago)

    Such a moving and beautifully written post.

    • Leigh
      February 24, 2016 at 8:11 pm (6 years ago)

      Thank you xxx

  11. Viktoriya
    February 19, 2016 at 10:10 pm (6 years ago)

    You are so amazing! I will be thinking of you and little Hugo! My son loves stars and he chats to them. Who knows maybe he chats to Hugo up there?
    I am grateful for the day 15 months and 1 week ago, when my son was born. After an easy pregnancy we woke up to a long intensive care… He was not breathing after he was born and had very severe meconium poisoning… his lungs would not open and spent 8 days fighting for his life in the NICU. I was lucky, or we all were… He is a little fighter and he did not break my heart then. But I think I’ve changed forever after having seeing my little one in that small box-giraffe, connected to many machines, which did breathing for him and other life support. So, I am grateful for all that, because even now, months later, I still remember everything as if it all happened yesterday. It reminds me that I almost lost him… I almost lost the world… Even on the toughest days I still cannot even think of complaining, because I know that it all would’ve been much worse if he was not here with me… I am grateful for my husband, who I think got 10 years older in that one day, who did not sleep and saw me and our son in so much distress. The picture of you and your husband with Hugo touches me so much! I see so many emotions on his face… I remember my husband looking the same… he is so strong, but I saw him helpless for the first time. I still have the photo of him and our son with breathing tubes on his face on my phone. Every day I see it and I feel so deeply grateful for these 2 amazing men in my life, who make me a better person.
    Thank you for your post! Lots of hugs and love to you!

  12. Mummy Tries
    February 19, 2016 at 3:44 pm (6 years ago)

    I’ve said it before and I’ll say it again: you’re amazing! Sending love and hugs your way this weekend xxx

  13. Julie basford
    February 18, 2016 at 9:46 pm (6 years ago)

    Heartfelt thoughts with you and your family.
    I too had pre-eclampsia with my son being born 27+6, 20th Feb 2007. I’m so luck he’s here with me still and I recall the feelings on the days he needed to be on the ventilator and blood transfusions.
    I’ll look at your posts now, not a big Twitter user, and hope to be further informed on Hugo and hellp 💖

  14. Tara
    February 18, 2016 at 2:21 pm (6 years ago)

    What a lovely, thoughtful thing to do. You and Martin are wonderful. It will be an honour to remember your Hugo again on Saturday.

  15. Kylie Hodges
    February 18, 2016 at 9:22 am (6 years ago)

    I am grateful for you. Your ability to show gratitude alongside your grief and trauma.

    For me I am grateful for similar. For my childhood experiences, my resilience, my ability to care for others.

    And my ability to retreat into my shell to get better again.

  16. Kiran
    February 17, 2016 at 8:21 pm (6 years ago)

    I’ll be joining you Leigh, and thinking of Hugo. It’s amazing how much you both have already achieved, and I have no doubt there is much more to come. Much love xx

    • Leigh
      February 24, 2016 at 8:15 pm (6 years ago)

      Thank you lovely Kiran xxx

  17. Alice @ The Filling Glass
    February 17, 2016 at 6:24 pm (6 years ago)

    What a wonderful idea to honour Hugo. We could sit and let all the bad overwhelm us but being grateful for what we have/do/are is so much more positive. You have achieved so much. #Hugoslegacy

    • Leigh
      February 24, 2016 at 8:15 pm (6 years ago)

      Thank you Alice xx


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