7 Nov 2019 65 comments

For My Mum.

Even when you know someone you love is reaching the end of their life, no matter how prepared you try to be, you will still never feel like you had enough time with them. I look back on my final years with my mum and I have endless regrets, although somewhere within me I know she wanted me to live my life. As her illness fully took hold I found it unbearable to be faced with it, and even now I occasionally, ashamedly, wish we had lost her earlier so she never had to suffer through such a cruel disease. 

It’s already been a month since my mum passed away, and even though I knew this day would come, I naively thought we had more time. I couldn’t find the strength to say anything at her funeral, but this seems like a worthy way to celebrate her.

When I think of my mum, I try to remember her before she was sick. And while it’s been years since I heard her voice, I will forever remember the way she couldn’t finish a story without stopping to laugh. I remember her singing to the radio in the car, and the way she would call up to me in the same sing-song way every single morning before school. She was always so cheerful, so full of joy.
A lot of the things I love about myself I got from my mum. She was limitless, completely capable of anything and so fiercely independent too. She had a contagious laugh that filled the room – another trait she passed on to me and my three brothers.

In the days after her death, I would read the notes on her phone just to feel like she was still with me. I’d laugh through tears at the silly day to day notes she felt important enough to type out, her only way of communicating.

My mum was diagnosed with Motor Neurone Disease in July last year, although she had been unwell for a long time before that. It came for her speech first, causing her to slur her words until eventually the sounds stopped altogether. She fought it right to the very end, never truly believing her time was up. 

When I was at home in Scotland, I would talk to her continuously over WhatsApp and email. She was still mum when we could chat like that, it made it feel less real. Then I would make the exhausting journey from Scotland to New Zealand to find a little more of her had been taken every single time. Before long she was unable to swallow or smile, she no longer looked like herself and acknowledging her illness became unavoidable. I know my mum didn’t like us seeing how unwell she was at the end, but I wish I could have spent more time with her somehow… I really did think I’d have more time.

MND is a horrific and unforgivable disease, and knowing that my mum spent the last years of her life in pain is too much for me to bear. Seeing the person who made you who you are waste away, unable to eat, no longer able to express themselves… I cannot imagine an end more cruel than that. Even before we noticed her speech changing, she had become withdrawn and lost a lot of what we loved so dearly about her. Her spark slowly went out, at first this materialised in the way she didn’t seem excited for the future. I often wonder how long she secretly knew before the rest of us began to notice.

I’m all too aware that I missed a lot of it too, I would go home for weeks at a time every eight months or so, while my dad saw her at her worst every single day. There’s a lot of guilt involved when a loved one has a terminal illness.

I had almost twenty-nine years with my mum, and I would do anything to have even just another day. When I allow myself to imagine more time with her, I live it out differently every single time.
I never got a chance to see or speak to her before she passed, but I hope she knew how much we loved and adored her. She was our mum, and she was wonderful.

I remember the way she held teenage me in the kitchen after my first heartbreak, and the time after that when I woke her in the middle of the night so she could comfort me when I felt like my whole world was falling apart.
And I remember the last time she held me, the last time I saw her. Those airport goodbyes were never easy, but that one felt different. Maybe somehow I knew that really was the final time.

Mum, we loved you so much, more than we ever told you. You held us all together, and even though sometimes I can feel myself unravelling, I hope you are here with me somehow.
I can’t imagine a life without you, you filled such a massive space in my heart that it doesn’t seem possible to ever feel like myself again. Losing you was always my worst nightmare, and somehow it’s been even more unbearable than I imagined.

Every day seems to bring a new realisation; I will never make another memory with you again. You won’t be here for my birthday or Christmas. You’ll never meet my future children, you won’t see my brothers get married or be there to grow old with dad. You’ll never know the person I’ll become.

My time with my mum is over, but I hope she is at peace somewhere, it brings me comfort to know she is free. I just wish I’d had a chance to say goodbye.

* * *

When I first noticed a change in my mum on a visit to New Zealand a couple of years ago, I searched the internet for hours trying to find what was wrong. The same result kept coming up: motor neurone disease, or ALS as it’s known – a disease with no known cure, and with a life expectancy of a few years. I refused to believe that could be a potential diagnosis, it was too difficult to take in. But the more I searched, the more I realised that it must be correct. It felt like my entire world was falling in.

I would spend hours searching for stories online, trying to understand the disease… and I guess secretly hoping that I was wrong. It was a truly horrific time.
Eventually my mum went for tests and dad gave us the news on their 38th wedding anniversary. It was motor neurone disease, our worst case scenario. We would have her for only another year.

I was cleaning out mums stuff recently while I was in New Zealand and I know that she fought the diagnosis up until her final days. I don’t blame her, coming to terms with something so final must have been insufferable.
In any case, I’m proud of the way she lived out her final months on her own terms. My dad said she went at just the right time, something I find so much comfort in.

And finally, thank you for the unknowing support over the last few years. I dealt with my mums illness privately, it didn’t seem like something I could talk about online while she was alive and fighting it. It was just too difficult.
I have of course struggled a lot, especially this past year, and I have no doubt that there are still many dark days to come, but I’m relieved than my lovely mum is no longer in pain.

Rest easy, mama xo.

  • Maria

    Kate, you are so strong for writing this. I lost my Mum when I was 23 to illness and I know the pain you’re in. The guilt and all the weird feelings that appear. But let them come. Feel everything you need to. Some days will be absolutely shitty, but eventually you will be able to feel light-hearted again, the darkness will lift. I don’t want to go recommending a load of books or podcasts right now as it doesn’t feel appropriate, but please know that there are things out there that I wish I’d read or listened to earlier on into my grief.
    Losing a mother is something that rocks your world completely. But she will always be with you. She is in your very DNA.
    “You think the dead we have loved ever truly leave us? You think we don’t recall then more clearly than ever in times of great trouble?” – JK Rowling.

    • Emily Nugent

      Ah these are such lovely words. X

    • Maria, this made me well up! Such wonderful words, thank you for taking the time to share such a beautiful sentiment. I’m sorry that you’ve experienced the loss of your mother, it really is like no other pain I have experienced. Sending so much love x

  • I am so terribly sorry for your loss. What a cruel disease x

  • Naro

    Kate, this is written beautifully. I’m so sorry for your loss and I hope your pain will find a place 💕

  • Oh Kate, I am so sorry for your loss xx

  • Beautiful words, I am so sorry for your loss.

  • This is beautifully written Kate. I’m ever so sorry for your loss. x

  • Niki Szabo

    My deepest condolences for your loss <3 <3 <3

  • Holly Young

    Kate, I’m so sorry to hear about your loss. These words are beautiful, I can’t even imagine how difficult it must’ve been for you to write this. Sending you much love xx

  • bee.

    A beautiful way to keep her memory alive and a real testament to who she was as a person.

    I hope in these days, months, years to come, that her spirit is just as vibrant in all of the stories you’ll share among family and in all of the moments you look back and reflect upon.

    All my love xxxx

  • Francesca Elizabeth Vivace

    I’m so sorry for your loss Kate. I lost my Dad last year very suddenly and have just sobbed reading the whole of this post as it resinates with me so much. I can’t imagine how hard it must have been for you to watch her struggle. Something i did not have to deal with but unfortunately I have the opposite, knowing I never got to say goodbye. There are no rights or wrongs when you are dealing with grief. Just surround yourself with people that love you, take one day at a time and be kind to yourself. I didn’t go back to work for 3 months. I can honestly say though, one year on and I think of him more and more every day and I’m sure it will be the same for you. She is still with you, she’s just around the corner waiting xxx

    • Thank you Francesca, your words are so comforting. I didn’t get to say goodbye either but I hope that she knew how much I loved her. I’m so glad you’re managing okay, this gives me hope x

  • I am so sorry Kate for your loss. Sending lots of love to you and your family.


  • Kelly Glen

    I am so very very sorry for your loss, these words are just so beautifully written and show just how much love you and your family had for your mum. It must have been very hard to write all of these very personal feelings down but I am sure in a way doing it will be of some help.
    Take care and all the best.

    • Thank you Kelly, it was so difficult but it did feel very therapeutic! x

  • Sending so much love to you and your family x

  • So sorry for your loss Kate. This post is truly beautiful, I can’t imagine how hard it must have felt to write. Sending you, and your family, so much love! xx

    • So hard! I don’t know why I did it!! She deserves to be celebrated though, I loved her so much x

  • Michaela Towers

    I’m so sorry to hear about the loss of your mum especially from MND as I too lost my mum to MND when I was around your age. It is such a cruel disease, it robbed my mum of mobility first then her voice. She said, using a speaking machine, loss of voice was worse than loss of mobility, for her. Your words about your mum are lovely and she sounds like a wonderful woman. Xx

    • Oh Michaela, thank you for sharing this. I searched online for other peoples MND stories when my mum was unwell, I wish we had found each other then. Yes for me, the speech going was the worst… I felt so much regret at never having asked her everything I wanted to ask her. I live with that every day, but such is life. Much love x

  • emmalcm .

    Kate this is beautifully written and a lovely tribute. I’m so sorry for your loss. It’s never long enough is it? It still seems like a shock somehow, even when you know. Sending lots of love to you and your family x

    • Yes such a shock, I sometimes wonder why I wasn’t more prepared. I guess nothing can ever get you ready for such a devastating loss. Thank you so much x

  • Anna Jackson

    This was so beautifully written – she sounds like a remarkable person. I’m so sorry for your loss x

  • Shani

    I read your words with tears streaming down my face. You wrote so beautifully 💚 it’s a horrible thing to see the ones we love suffer, and it is a reminder to live life to the fullest. Sending you a virtual hug!

    • Thank you Shani, it took me many attempts to write it!! Yes, I’m definitely feeling that right now – my mum would want to see me living my life x

  • Joke Zagers

    I’m so sorry for your loss. Sending you and yours lots of love!

  • Jill

    I’m so sorry for your loss of your mum. Cherish all the happy memories you have of her. Lots of love to you and your family. X

    • Thank you Jill, the happy memories are starting to flood in and I’m embracing them every time! x

  • Laura Juliana Rojas Riveros

    You have such a beautiful heart. Oh Kate, I am so sorry for your loss. Sending lots of love to you and your family. x

  • Naomy

    Dear Kate, reading this with tears in my eyes, knowing the pain all to well you are feeling. I’m so so sorry for your loss, all of our thoughts are with you all over the world… hug, Naomy (The Netherlands)

    • Thank you lovely Naomy, it means a lot that you took the time to comment x

  • Sadia Rehman

    Kate, thank you so much for sharing your story. I read this with tears, Kate, as I too lost my mother last year and what you described about how you felt.. it resonated with me. I’m so sorry about the struggle your mother had to endure. We are all behind you and the only advice I can give you is don’t shut yourself out from the people around you. Let them in because grief is hard on your own but is relieved when you experience it with people you love. Sending you positive vibes and love.

    • Oh Sadia, I’m so sorry to hear that. It really is an unimaginable pain isn’t it? It’s funny because when my mum was unwell I couldn’t find the words to talk about it at all, but now she has passed I want to talk about her all the time. It feels healing somehow. Thank you for your wonderful words x

  • Caroline Hirons

    Oh Kate I’m so so sorry for your loss. That was beautiful. I’m just so sad that you had to write it…
    sending so much love to you and your family ♥️

  • I am so sorry for your loss Kate, sending lots of love your way xxx

  • My heart broke reading that Kate. So sorry this happened to your family. Lots of warm thoughts and prayers for you.

    • Thank you Divya, how wonderful of you to comment x

  • sending you so much love ♥ what a beautiful ode to your lovely mum. i know it seems so final in a physical sense, but you’ll continue to see the essence of her throughout your life. lots of love to you and your family xx

    • I like to believe this too, I feel her with me every day. Thank you for your lovely words x

  • Sending my love to you and your family. I’m so sorry for your loss, Kate. You are so strong for sharing this, and it’s so beautifully written. Keeping you in my prayers.

  • Riley Stewart

    This is a truly beautiful tribute to your mum Kate. I’m sure she’s so proud of you and the person you are. Sending love to you and your family.

  • Kate, I am so sorry. I don’t even have the words. I am heartbroken for the pain you and your family are going through. Just sending so much love. Your Mum must be so proud of you, you’re a gem xxxxx

    • Thank you Em, I hope she knows how much I loved her x

  • I’m so sorry to hear of your loss Kate. I’ve never lost anyone to motor neurone disease but I’ve heard of others who have, and it must have been very hard to be so far away from her.

    I lost my aunty who was like my mum a few years ago to Alzheimer’s. She lived far away too and I could not see her as much as I’d liked. I really felt for my uncle who had to face it day-in day-out, I was in the position that I could remember her more as she was until I had to visit.

    It’s really hard. But I think there is some comfort in that who your mum was has been passed to you and your brothers. Sometimes when making decisions now I think “how would my aunty deal with this” and try to do what I think is right. I think she’d be happy with that, that she had a positive influence on people’s lives. Same to you, your mum’s memory will always be with you, and you can think of her in decisions you make and things you do. xx

  • I am so incredibly sorry for your loss Kate. This post was simultaneously heartbreaking and beautiful to read. I can sense your love for your Mum through reading this and I have no doubt that she knows how much she meant to your family and is so proud of you. I sincerely hope that with time, you can remember all of the wonderful times spent with your mum and feel joy. You are in my thoughts and prayers. Sending lots of love!

    Sydney Russo

  • Kate, this truly broke my heart to read and I’ve been sobbing since I first started reading it. I also lost my Nannan to MND 10 years ago and it truly is the most horrific disease; I’m so, so sorry for the loss of your mum; she sounds like a truly wonderful woman. I hope you know how proud she will be of you and that there won’t be a day where you don’t think of her, I’m honestly not really sure what else to say apart from thank you for sharing. The disease is just awful and cruel but I hope you finally start to regain yourself again as it slowly (very, very slowly) begins to get easier. Sending so much love to you and your family xxx

  • Dominique H.

    What a beautiful tribute to your dear mother, Kate. It’s heartbreaking that you had to write this and it brought tears to my eyes. Especially since I’ve lost my own mother due to cancer in November last year. It’s such a tragedy that we have to go through this at such a young age (I will turn 28 myself in December). 🙁

    Hope you can stay strong and will hold onto all the beautiful memories you’ve made together. I’m sure your mother is smiling down from above and is super proud of you. <3 She will be with you wherever you go or whatever you'll do. Big hug! x

  • This is an unbelievably beautiful and touching tribute to your beautiful momma. I can’t even begin to fathom how painful this loss is, and how trying it must have been even to write this. I feel like I got a sense for who she was through your words, and the relationship and bond that can only be shared by mothers and daughters. I truly send you all my love and hope for the future days of sadness. Wishing you the absolute best in this journey of grief. I’m saying a prayer for you tonight <3