What if we viewed lived experience as an asset? As an asset of professional, economic,…
Saturday 30th August 2014
To my beautiful mum,
Thank you so much for all you do. You keep me alive each day physically and mentally, giving up your life to save mine. You gave me life in the beginning, and continue to give me life by doing all the specialist nursing procedures necessary for me to live. I am so grateful for this. Though my quality of life is poor, we sap every little bit of happiness and laughter out of this difficult situation, however hard it is to find that happiness some days. Between you, me and Vicky, we muddle on through.
I’ve always been a mummy’s girl, and I still am. We have always had a lovely, close relationship, but my illness has brought us even closer; it’s also given me a relationship with Vicky, with whom I could barely spend five minutes without arguing prior to my illness. Our relationship only continues to grow stronger, we are more than just mother and daughter; we are friends, best friends. I can talk to you about anything, even things no mother should ever have to think about. You live with the knowledge that you will probably outlive me, but also the fear that you will leave me. Who would love me like you do? Who would understand like you do? Who would give up their life to keep me alive? There is no love like the love of a mother. How would I cope without you? You are the reason I cope. You keep me going and give me the strength I need when all my strength is gone. We can talk about things that are so difficult for people to talk about, like end of life care, my wishes and my funeral. I can see it pains you from the look in your eyes; it pains me too, but you always let me speak of it if I need to. No mother would ever want to think about things you have had to.
You’ve always been my greatest support, and my number one fan. You were, and are, so supportive of my interests and hobbies. You listened when I didn’t want to dance or go to jujitsu anymore, and you let me have the horse riding lessons I so desperately wanted, saving up your own money to pay for them. You let me change from playing the drums to playing the piano, and then understood when when I wanted to stop having piano lessons so I could ride most days of the week as I wasn’t enjoying it anymore. You would sit in the car down at the stables night after night, watching me ride, walking with me out on hacks, running in front of Clyde that summer in 2003 when he would only canter if he followed you, making up feeds and helping me muck out. You paid for me to loan horses, have jumping and cross country lessons, and go on beach rides (four to be exact: one on Jaffa, one on Spirit, one on Edwina and one on Rodney, because I know you laugh about my detailed memory). Now, you support me in my writing and speaking. I know you get nervous before I speak, and were extremely nervous backstage at Crufts, wringing your hands until someone told you to stop, but you put your own nerves aside to support me. You believe in me, and give me the confidence to go up there – for someone who wouldn’t speak in class or stand up in front of people, speaking to 100+ people in Parliament was a huge step forward; talk about starting at the top! You listen to me practising my speeches over and over. With pieces I write, you read them for me to pick up any spelling mistakes and tell me if things don’t make sense so I can improve it. You always tell me how proud you are of me, even when I feel I’m nothing to be proud of.
You help me with everything as I am dependent on others. Even when we have carers here to give you a break, you are still worrying about me and thinking about me, and you have to fit in what you need to do around my IV medication/TPN schedule. You never complain that you haven’t had a break for six and a half years, and never make me feel like a burden. You have had to learn various nursing skills in order to keep me alive, including central line care, TPN, administering IV medications and IV antibiotics, injections, syringe drivers, NG and PEG care, enteral feeding, intermittent catheterisation, suprapubic catheter care, stoma bags, Ileostomy catheterisation to relieve pseudo-obstructions, dressings, and pressure relief and pressure sore care, when you were terrified as a child that your mum would expect you to be a nurse like she was. You never wanted to be a nurse. Now look at you.
You put up with me when the pain makes me irritable, and never take offence as you know it’s the pain talking. You are always there when I need you, not only on a physical level but an emotional one. You’re always up for a hug – though that first year of being ill was awful because the pain was too great that I couldn’t be cuddled. We never could have expected everything that has happened when I first became ill and disabled in January 2008. What we’d give for me to be as well as I was then. You comfort me and reassure me that I haven’t done anything to deserve this, and that I am not being punished for anything and I have done nothing wrong. You make me feel good about myself because you remind me of all the things I’ve achieved. I couldn’t have achieved them without you.
We’ve travelled a long, hard journey that no family ever should. We’ve stared death in the face with me a few times now and have had to accept that nothing more can be done. We’ve been through hell at times and yet we’ve all made it through alive. I know you feel guilty that you can’t devote as much time as you have with me to Vicky, and I know this guilt plays heavily on your mind, but we cannot change the cards that have been dealt. I am sorry things have turned out the way they have, that you never really get a break, but I know you tell me off for thinking I am a burden. You’ve never made me feel like that, not once. I wish I could do more for myself to give you a break. I feel so lucky to have a mum like you who learns every new procedure to keep me alive and who I can talk to about everything, because I know not everyone has that. Your calmness, patience, kindness and positivity, and loving heart, have been passed down to me, for which I am very grateful. It has got me through the difficult times, like it has you. I am so grateful to you for everything; for you are the only reason I am here. I love you so much mum, not only as my mother, but as my nurse, confidante, number one fan and my very best friend.
I love you more,