Being a mother is quite simply the most life-affirming, joyful and challenging journey I have ever been lucky enough to undertake.
It is a privilege to be my children’s mother and, in a parallel universe, I would have been there every step of the way. I would have been at the school gates every day and I would have read them stories every night. I would have held them when they have had fevers, and watched movies whilst they recovered from chicken pox. I would never have never asked them to be quiet (because even the reverberation of their voices has been enough to make me vomit) or not to hug me as my weight is so low after sepsis that it hurts for their tiny arms to wrap around me…
In my ideal world, I’d never have asked them to play in the bathroom so I can still watch them whilst doubled over the sink and I would never have had to explain why I won’t be there for school, plays, sports day or school trips.
I would never have had the agony of watching them claw at their father, screaming as he tries to bribe them to leave the hospital room because visiting hours are over and I haven’t been home to read them a bed time story, except via Skype, for months.
I wish I could always have had the certainty that when I sent them to school in the morning I would definitely still be there when they get home at 3.30pm, and not rushed to hospital.
In my ideal world I wouldn’t have missed every family holiday and had to pull in every last favour and ask friends to watch them until their father came home.
I would love to live in that world: my parallel universe, where I’m always fit and healthy. But, of course, I don’t.
My family and I live in a world of uncertainty. We exist in a world of doctors, hospital visits, a home feeding regime, medications, chronic exhaustion, frustrations and limitations.
How have we managed? Honestly, looking back, I have no idea and, looking forward, I have no idea about the future. In the UK there is absolutely no help whatsoever for mothers suffering from a life-long illness. In this society, a mother can be in hospital 3-6 weeks without anybody worrying about who is helping out with the 2 children at home. Most doctors don’t even ask. There is a frightening trend of indifference, a simmering social-disconnect in the NHS.
In my ‘parallel universe’ – where I am not constantly drowning in guilt – a doctor might sit down and ask me if I’m okay. Or, ‘how are my children coping?’ And they wouldn’t sit down and ask me “What job do you do?”, as if being a mother, let alone a mother who has spent 40% of the year in hospital, was no excuse for not working. I would be superwoman if I managed to balance motherhood, chronic illness and a job.
Being a parent with chronic illness is heart-breaking. I worry about my children’s mental wellbeing all the time. I spend all my energy looking after them and trying to protect them. I try to stay positive, create a safe loving family environment where they don’t worry that the next time I go into hospital, because there is always a next time, will be the time mummy doesn’t come home. I relish the times I am ‘doing well’ but they make the time away from them harder.
Before my youngest went to school I was constantly juggling childcare for her. Childcare is so expensive but sometimes I have been so ill that being in childcare was better for her than being sat with the ‘virtual nanny’ whilst I lay next to her wishing I could close my eyes just for a second. Mothers with chronic illness are constantly just surviving physically, even before taking into account the stresses borne as a mother of a pre-schooler with boundless energy.
There is, however, also a very positive side to being a mother with chronic illness. Chronic illness strips us of our identity. Every day I strive for it not to limit or define me, often an impossible battle – but one worth the fight. If I didn’t have the children I worry where my focus or purpose in life would be.
Being a mum means I have to get up at 6.30am. I get up, I wait for the swelling in my fingers to be bearable and the painkillers to work and then I go about making breakfast. I put Chris Evans on and he keeps me company until the kids come down and we sit and they eat breakfast with me. They make me laugh and, although they sympathise, they never let me feel sorry for myself. I still make dinner every night, I still drive them to scouts, gymnastics, ballet, friend’s houses. When I am unable to, they miss out – they miss out a lot. In am still ‘mum’ and all the that comes with being a mum.
Each day begins and ends the same way: in varying degrees of pain and exhaustion, like many people with a chronic illness. I can do it though. I can do it because I am a mother and I have to. My needs come second and in terms of my mental wellbeing I am glad of that.
I wish, wholeheartedly, that I had had more support. I want nothing more than to offer my children the best and happiest of childhoods but I feel I spend my life parenting with both hands tied behind my back.
I will always strive for normality for my children. It will always be a work in progress. I have encountered so much negativity and misunderstanding of life-long chronic illness. I work very hard at protecting my children, struggling to keep my illness a secret from the school gates. I think the ‘but you look fine’ catchphrase, which is so often thrown at the chronically ill, causes many of us to hide in the background afraid of the prejudice surrounding illness and hidden disabilities.
Somehow there needs to be social movement where chronic illness is not a dirty word. A movement that challenges the instant assumption that not working due to illness equals being lazy and wanting to live on benefits. There also desperately needs to be a social awakening, especially within the medical profession and welfare system, towards helping chronically-ill mothers looking after young children.
We need social reform, allowing government childcare funding to be allocated via medical professionals, providing aid to the primary carer of children while they remain in hospital or recover from life-threatening complications at home. Short-term funding needs to be available for help with household tasks in times of ‘crisis’ and at times where respite is necessary. Put simply, the government needs to hear the plea for help from all the chronically ill parents out there, and it needs to do better.
By Lottie J. Lane – guest edited by Fran Halsall.