My Mum is on Dialysis. Daniel’s Story.
Daniel’s birth in 1993 was highly anticipated by the renal staff at Nottingham City Hospital. Until then, it was unheard of for an existing dialysis patient to successfully conceive and sustain a pregnancy. Daniel was the first baby, worldwide, born to a dialysis patient.
“My earliest memory was seeing a newspaper article of me as a baby with the headline “Daniel’s a rare lad, says Mum.”
I must have been around five or six. I remember feeling it was special and that it was linked to my mum’s health, but for myself, it wasn’t a big deal. As I got older and saw and how small my baby clothes were (I was born at seven months, weighing two pounds) I think I appreciated how lucky I was to be here.
I understood that sometimes “Mummy wasn’t well”. I’d have people look after me from time to time; more than other kids I knew. Probably once or twice a week. I guess it was just different.
Despite Mum going for dialysis three times a week, I had a good childhood. By the time I was at primary school, I had a better understanding that my mum wasn’t well and went to hospital 3 times a week.
I can’t say I missed out on things compared to my other friends because I didn’t know any different. We went on holiday, I still did everything my friends did and from my perspective, everything seemed normal.
On Saturday mornings, I got used to it being just me and Dad. Mum would leave early for dialysis and be tired when she got back. During school holidays I’d spend time at my auntie’s house, which I knew wasn’t quite the same as my friends but I enjoyed going there. I’d tell close friends about my mum, but I guess they didn’t understand.
Mum being on dialysis is all I’ve ever known. It’s all she’s ever known, really. Her kidneys failed when she was seventeen. I don’t think I missed out on anything .. I did the same things everyone else did.
Mum always did things with me as well. She would take me out. She would dance with me on holiday! She was the funny person I always joked and fooled around with.
Sometimes, Dad and I would collect her from dialysis. It was a bit daunting, walking into the unit the first time. My mum explained the machine and how it worked and I felt more at ease. It wasn’t always nice seeing my mum if she wasn’t well; but compared to everyone else there, she looked much healthier which made me feel more relaxed.
She knew all the nurses and people on the ward; it was like she was the popular kid in class! They all liked and respected her and I hoped that Mum was in safe hands.
When I was fourteen, Mum had the call for a transplant after waiting nearly twenty years. The kidney didn’t work. She was in hospital for months and I realised that this disease wouldn’t just go away. I’ve always been intrigued about Mum’s condition but sometimes in the past I think she’s shied away from discussing it to protect me. As an adult, I know a lot more about dialysis and the impact on her health now, after thirty-four years on the machine.
Me and Mum have a good relationship; I know that she would do anything for me. When I returned from university, I moved in with Mum. She was on home dialysis by then. Yes .. she‘d shout at me to clean the kitchen but we would see each other every day. She’d cook for me and we’d talk and laugh about things. She’d sit on the machine whilst I’d play the new Lady Gaga album to her or she would help me learn the trumpet. I’ll always remember those times.
However, I’ve seen how her health has impacted other elements of her life. Mum’s attitude and perception of life has definitely changed over the years. It’s been hard to see her struggle with her mental health in recent years, which sometimes meant we haven’t quite seen eye to eye. I can’t imagine life without my mum; she brings warm, bubbly energy to the room, she’s always stood by me in my life and I know she always will.
I do worry about Mum’s overall health as I can see how long-term dialysis has affected her. She didn’t always tell me the details but we talk openly now.
I’ve always been inspired by my mum. I will never fully understand the life she has had. She has always just tried to get on with everything and lead a normal life. She is a fantastic mum. Although I know she sometimes puts on a brave face, her persistence and determination to carry on I can’t comprehend.
I admire her because she could have led such a different story. Since she had to give up work, she tries to do all kind of things she has never been able to do, such as ride a motorbike! Things we all take for granted. The way my mum has taken the bull by the horns to do things she’s never done is something I will definitely take forward in my own life.
Seeing her drive in supporting other people with chronic kidney disease and contributing to research is incredible. Listening to her speak at a dialysis conference made me feel so proud.
The future is scary. Mum is suffering more from the effects of long-term dialysis. I just want Mum to fully enjoy life; forget the cares and worries about what people think, stop holding back and enjoy the potential that she could have in the coming years.
I know she still struggles with her mental health but I will always be there to support my mum. I will help her live her best years now, whether that means winding down or doing things she’s dreamed of doing. I’ll be here for her.
She has been through a lot. It’s time for her to be selfish and do what makes her happy. And I will be with her, making it as enjoyable as possible. It’s the days spent together now that I’ll cherish, whether it’s going to the theatre or days out or holidays by the sea.
I know that no one is around forever. So I will continue to make (even more) happy, life-long memories with my mum whilst I still can.”
Last Reviewed on 10 May 2024