This is the place where my two work worlds intersect … a place I am very passionate about … bringing together my experience of working with chronically ill children, young people and their their families - with counselling, holding space for big feelings and providing support.
The most important thing to state before I explore this topic is that the range of illness, of families and their resources, and of experiences is endless - not one parent or families experience will be the same as another’s … Also I am speaking from a place of privilege - from my professional and not my lived experience. But there are some themes that have a universality which I think are helpful to explore and communicate.
I remember a number of years ago having brunch with new neighbours and explaining my job. I was in my current job at a Sydney children’s hospital managing a team who help children and their families cope with and adjust to illness and treatment. Everyone at brunch was a little taken aback saying things like “I didn’t really know kids got cancer ... and not that many kids … ”
I was shocked - it’s easy to forget that other people don’t live in our worlds - or to take the things we’re aware of for granted as widely known and understood. Before working at the hospital I’d worked in paediatric palliative care - so not only was children and young people being seriously ill something I knew well - but also the devastating reality that some of these children died and didn’t get a chance to grow into adulthood.
In the decade I worked at the paediatric hospice I would often tell donors who visited for tours that having a chronically or terminally ill child is like having a new born baby for years on end. While many friends and colleagues are empathetic what they often don’t understand is the relentlessness of the demands. For many parents or carers the luxury of having a few drinks is impossible as someone always has to be able to drive to the hospital in case of an emergency. Going out child free is difficult because finding a babysitter skilled, confident and trusted to manage medical needs is hard. Sleep is often disturbed because of worry about symptoms, or because of treatments like feeds or medications needed in the middle of the night.
One thing most misunderstood is the mental load - parenting requires a lot of us everyday … but parenting a child or young person who is chronically ill comes with additional to do lists and demands on time and energy. Appointments requiring time off work and school … following up results … ensuring communication between care providers and agencies … packing medications and equipment … filling in additional forms at daycare, school and for other providers … keeping up to date with research and advances hoping that new treatments or medication will soon become available - the lists can feel endless.
Advocacy is another often unseen exhaustion factor - explaining at school why your child is okay to play in the playground despite their skin condition, lobbying funding bodies to get support for subsidised treatments or funding to access necessary services.
Guilt and grief can also be part of the journey for many of these parents and carers - guilt that they didn’t know they carried genes that have resulted in their child’s illness, grief that their child may not get to do things they imagined as a parent - like playing football or going to dance lessons … guilt that the needs of their sick child take away time and energy from their other children … grief their child was born to early for the promised miracle intervention coming in a few years time … guilt about having to hold their child while they endure painful procedures again and again and again ...
All of this can lead to times of loneliness - exhuastion along with practical and financial implications can make socialising or "self-care" difficult to access. Some chronic illnesses are invisible leading people to assume their is no burden or the burden is low while others are very visable sometimes resulting in people withdrawing from their own ignorance or fear. For many families covid exacerbated their stress - and while many of us have returned to some sense of normal these families need to remain hyper-vigilant to protect the often fragile health of their child.
Not one family I have worked with would ever change their experience - their love for their children is absolute … but sometimes it would mean a lot to them to have others expand their understanding or hold a space for their experience …
If you parent a child or young person with a chronic illness feel free to add your refections, thoughts or experiences here …
Comments