Both Sam and I have been asked by a few people to post our speeches from the funeral on the blog. I’ve also included just below the beginnings of my mums last blog that sadly she wasn’t able to finish.
Blog 47
“This is the last blog as I cannot type and breathing is hard. I cannot reply to your letters but I can read them.
The morphine is helping but it depresses my respiration, I am sleeping most of the time.
When I got the diagnosis I looked at the MND association and the bulbar MND life expectancy is from 6 months to 3 years . So I have had 3 years. I have learned so much about life and death.
I have endless warmth, love and empathy from my family and friends. Holding hands, massaging my feet and wise words. In life we partake in the material possessions race to have a bigger house , a faster car, luxury holidays and designer clothes but when you are dying family and friends are the most important and objects are
Sams speech
In 1960 my mum was born. Never shy of new experiences she grew fast. Leaving home at 17, my mum moved through squats, caves and the Iron curtain before coming to settle with a curly haired man she fancied in Liverpool.
I remember a conversation we had a couple of years ago wherein she said ‘I don’t want to become old, I just want to be a sage before I die’. We laughed, and I went on with my day. But those words stayed in my head. ‘She wants to be a sage…’
My mum didn’t want wealth, or any particular experiences, just wisdom. Why?
As I pondered this, I came to realize a lot about my mum. Throughout her life she worked to gain the tools to facilitate her passion. Helping others.
In her 20’s she forged a plan, which involved her returning to the North and abandoning her education thus far to enter a career in Occupational Therapy. Together with her patients she built an environment to feel safe in and overcome any limitations. A natural choice really as she never accepted any limitations on herself, even up to the very end.
She carried on passionately with this career until my dad passed so suddenly. With Joe and myself, generally good but often naughty kids, this was a difficult time. But if there was anyone who knew how to reconstruct in hard times it was my mum. For me, looking up to her during this time, she was nothing less than composed; planning new schools, a move across town and completing an MSc whilst working full time.
In the midst of all of this there was never a loss of maternal warmth and attention for those times when I’d drawn a scruffy picture or written a misspelt poem. She smiled broadly ever time we saw her, made time to read us books, (carrying on my dads legacy by reading us long walk to freedom) and took us to all our kids groups.
Through all of this, when many of us would have given up, she had the strength of character to grow in to a strong (but still small) woman relentlessly giving all she could to those around her. Throughout her passage through MND nothing changed. Other than the fact she learnt a lot of very real lessons about life and impermanence. Lessons that she so helpfully passed on to those around her in a way we could understand, with limitless patience in my case.
She died a sage, about that I have no doubt. Whether you believe in life after death or not, her lessons will undoubtedly stand the test of time and the love she left will fill us when we need it most for as long as we live.
I loved my mum when she was here, as I will love her forever, as a woman who cared and fought for what was right. A woman I am so proud to have known, never mind to have had as a mother.
Joes Speech
I remember waking up one morning as a young child, the seemingly endless feelings of warmth and comfort hanging in the air. I remember sunlight streaming through the windows, laying awake a while as I watched the curtains sway in the breeze and dust particles floating and moving in the rays of sun. Safe in the knowledge that my parents lay next door, I remember mum walking in and waking us up, saying come now honey, wake up it’s a wonderful sunny day outside, come one on sunshine lets get up” I remember me and sam giggling as we asked her why she calls us things like honey and sunshine when we’re not those things and we’re just little boys
A few years later I remember laying in bed, this time in the evening, I remember a feeling of fear as I lay awake after bed time, nervous of all of these strange noises I heard in our new house at Houghend avenue. I remember listening as closely as I can to my mum typing diligently downstairs, working on her MSc, a single parent now trying to keep us afloat. Only as I reflect on that memory does it bring to light how motivated she was, how selfless she was, sacrificing even her sleep now almost every night of the week to care and so lovingly look after and work hard for both me and sam. Its also a reflection on how devoted she was to her work, giving all that she could to the people that she had something so special to give to.
I remember just 10 days ago crying my eyes out to her as she breathed peacefully in bed, telling her how much I love her, how much she means to me and so many people around her, realising how she’d given me more then i’de ever imagined and thanking her for everything she’d done. Telling her how sorry I was for being so terrible as a teenager, telling her again how much I love her and how finally I was so happy for her, so happy that she’s soon to be free of all of her symptoms and that soon you’ll be able to dance once more.
My mum was a wonderful person, she was vivacious, selfless, strong willed and well directed. She went as confidently into life as she did into death. She will be greatly missed, and for any of us who feel we have a debt to pay, or a gap to fill, however big or small. The greatest way we can fill it, is with her teachings.
In her final blog, yet to be published due to it’s incompletion she talks of how we don’t appreciate our lives enough, we place too much emphasis on material things, fritter too much of our lives away in the expense, not always the gain of the people around us. It’s each other and our own real lives that are most important.
so even if it’s just opening your eyes to whats around you, look at the sky every now again, listen to the sounds of the street, the birds, the traffic, feel the breeze when it blows on your face or the coldness of the air and relish in it. Because it’s these things, little things that remind you that your alive and not just a character in your own internal monologue or in the future of that beautiful retirement home on the beach your yet to even see.
Maybe take a day out and make a collage of natural materials, and appreciate the beauty and intricacy of everything you use. You could let go and dance vivaciously and lovingly on a night out or a dance class or wherever. Spend a moment with your friends, a real moment and think about them, let the qualities of their voice resound in your ears and appreciate them. Meditate on the present moment or the ones you love, Appreciate your day and just have fun, take something beautiful from my mums life because it was her deepest of wishes that thats what she wanted to spread.
It’s in these things you can pay your respects, in these ways you can grieve and it’s in these ways you can connect with her. even too if it’s just that you want to cry, let yourself cry, feel the quality of your sadness and search deep in your heart and relish in it because this too is a part of your life. And this too can be a beautiful moment, you don’t need to give to many thoughts to what other people think, my mum never did.
I don’t know if my mum will forgive me for saying such a cheesy line, but with the passing of this northern star, at least to me feels like a super nova, I hope it does for you too. 
Living with MND 