We spent the first 80% of the first four years of my son, William's, life in hospital. The rest of it was spent juggling complex medical treatment, including intravenous drugs and intravenous feed (TPN) - a treatment only the very highest qualified nurses perform in hospitals.
|A world often condensed into one room|
After William's transplant in 2008, which you can read all about here (scroll down to November 2008), we have only had two (now in the middle of our third) long spell in hospital.
When your life is compressed within the walls of a hospital, it can be a huge fight to maintain your own sense of identity. Of course, the child is at the centre of your world, and the focus of the team looking after them and that's just the way it should be and the way you'd want it to be. The juggle between the needs of your child in hospital and any siblings is an impossible one to manage, leaving you feeling constantly guilty - about leaving the well siblings when you're at the hospital and leaving the poorly one when home. I'll be coming back to this in later posts. What is less talked about is the juggle between your own needs as an individual. I have a book that talks of parenting a sick or disabled child as 'extreme parenting,' making us 'extreme mums.' People often refer to mums in this situation as 'super mums.' We play the role of mum, nurse, physiotherapist, occupational therapist, dietician, pharmacist and more for our children but, amongst all of that, we are us, individuals who have our own set of dreams and ambitions, often forced on hold or given up on with the diagnosis. In the past, I have let that happen time and time again but, this time, faced with the start of what looks set to be a year that takes us back to a life close to the one we knew before William's transplant, I am determined not to let that happen again. My dreams and ambitions for 2014 will have to be adapted sure, but, this time, I won't give up.
Living in a hospital is life in a vacuum. Small things that would normally just irritate you can become massive issues. One of my biggest pet hates is being called 'mum.' In past years I think I just found it a bit patronising and weird but, looking at it again it is so much more. By calling women who are living in hospital with their children, and the men for that matter, 'mum' or 'dad' staff are reducing them as an extension of the child. Someone who is there to play a role, just as the staff are, within the care of the child and running of the ward. I have lived for eight months at a time, sleeping virtually every night and being there every day with nurses who still called me mum. After time it can make us think of ourselves as just mum and forget the 'me' who has needs of their own. Since talking about this with other women many have agreed, even thanked me for voicing what it was that they were struggling to put into worlds themselves about the same. Everyone I've talked to about it said they hate being called mum too. Sure, it's necessary when someone who doesn't know your name needs to address you but, over time, just as they learn the child's name they could learn yours. No one calls the child 'patient!' I must say, most of the team we are living amongst in the liver unit at Birmingham Children's Hospital take great care in learning about the whole family. Their reward is that they can share in the rich tapestry of their patient's lives and take interest in the personalities, talents and goals their parents and siblings have too. As a result of this, we are all one big family who celebrate and hurt together as children receive transplants, get better and, at times, have setbacks. It really doesn't take much and it makes a huge difference! William has suggested that the resident carers name is written on the door or bed space along side the child. What a great idea! I think children's wards across the UK should take it on board.