Before Harry came along I had always thought that, if my child had ‘special abilities’, I would find a team of parents in the same boat and would live in a sort of ‘mutual understanding social bubble’ (sounds very COVID 2020 now!)
I learnt very quickly that, despite the world of social media, instant connections and Google, it doesn’t always work like that. Harry, like so many others, doesn’t fit neatly into a box and therefore the ‘tribe’ never feels quite right, relevant or equal! He is either too sick or not sick enough!
The thing I struggle with is the invisible scale. It is nobody’s fault but, simply due to the nature of supporting a child with a complex condition, there is always someone in the ‘gang’ who is struggling more; who is angrier, who shouts louder, who lives in a more challenging health authority or, sadly, who has a child whose challenges are simply worse. The difficultly for so many families like ours is: where on earth do we sit?
With hydrocephalus, as with so many other conditions, the impact on the patient is vast. Some children with the condition will lead almost completely ‘normal’ lives, albeit usually with a shunt inserted in their brain. Others, however, will be severely impacted and suffer a mydraid of issues including learning disabilities, hundreds of operations and long, complicated, painful hospital stays.
Our experience is that Harry’s health fluctuates massively! One month he can be brilliant, a few weeks later the blue lights are whizzing him into hospital. He has, however, been great for about a year so fingers crossed he will remain this way; but, the honest answer, is we just don’t know. Our life often feels like a tightrope between over reacting and under reacting (I once called out an ambulance, only to find he had the winter vomiting bug. By the time the ambulance pulled away, one of the other children had also turned a nice shade of green). Conversely, I can still remember sipping my coffee as the Radiographer came running out of a CT scan, shouting don’t feed the baby- he needs surgery now!
I guess what I hadn’t accounted for when you join ‘a support group’ or ‘family forum’, is the feeling of having the ‘right to be there’. When thinking about life with a child who has complex needs- imposer syndrome was not something I had ever envisaged!
After a day with Harry who has hurtled downstairs, bossed around his siblings and generally caused mayhem, do I have the right complain in a forum about feeling anxious or tired? When he has been well for a significant period, how do I say his condition still scares the hell out of me? Especially when a Mum has just posted about her learning disabled child’s complicated EHCP (Education Health Care Plan) battle or a Dad shares his heartbreak that his five year old son still can’t say ‘Daddy”?
Despite this, the sense of terror and constant feeling that we are not like other families means that finding a tribe of parents who ‘are in the same boat’ is essential. Maybe comparing is dangerous, maybe accepting that life is just harder when you have a child with a health condition is enough. Perhaps we should be working towards a society where anyone who feels they need to seek support from others should feel justified to do so. After all, the ‘Insta-life v reality’ is something we are all aware of.
Perhaps feeling not ‘special or not disabled enough’ is actually a social barrier and one which should be challenged? However, I accept that’s an easy statement for me to make. I haven’t just completed a 42 page form stating to a anonymous stranger why my child will never be able to walk up a set of stairs unaided. And, yet, I’m still looking for that illusive ‘same boat’ parent tribe.