Hi there I’m Lucy. I’m a Mum to my wonderful son who, since birth, has been involved in the kidney (renal) and bladder (urology) world. Whilst I have been caring for my son I’ve been trying to collate and share some useful bits from my experience as a Mum, with the aim of helping someone feel a little supported.
Prior to my son’s birth I thought I had things covered and knew what I was doing. Since his birth the learning curve has been steep. My son was born with Posterior Urethral Valves (PUV) which caused severe damage in his urinary system. He has a Ureterostomy and until recently has been in end stage renal failure. I say recently, as he has had a kidney transplant.
These last few years have seen huge changes for us as a family and I know that we’re not alone. Covid has made life 10x more complicated and the isolation we already felt has been increased. Lockdown encouraged me to take to my sewing machine and do some crafting both for my own mental health and wellbeing but also to make adaptive clothing for my son. This has led to the Ureterostomy belt, something I’m proud of as it works for us.
Making the belt was an eye opener for me. It made me think about the challenges and worries we’ve had and the ones to come. I thought that perhaps through this website I could collate the practical things myself and others have learnt so others starting on this journey have a place to reference for these sort of questions:
- What should be in my emergency bag for hospital?
- Which bottle/ cup has been the best for my child to reach their fluid target?
- What should I have in my change bag.
- How can I balance, life, work & my caring responsibilities?
- What should the routine be?
- How can I look after myself?
I can’t claim to have all the answers but hope by starting this blog we can form a bit of a practical resource for others in this situation and hopefully offer some comfort to those in this situation that you’re not alone.
Hopefully its helpful, a useful read and something you would like to contribute to.
Please be aware that all content on this website is written and collated by myself and expresses my views as a parent.
The Hidden Everyday 