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.
