10 Apr 2017
When a child is first diagnosed with a complex medical condition or disability, a tidal wave of unanswered questions sweep through life.
For me it was as though, one minute I lived in a town that I recognised, one I had lived in my whole life. A town with familiar faces, understandable street names and identifiable buildings. Then the next minute I was thrust into a new environment. A place where the landmarks were unfamiliar, the people dressed differently and spoke another language.
Soon my brain is whirring with long words that I couldn’t pronounce, never mind spell. And in every new conversation with medical teams more words and new advice were hurled across to my side of the table.
And all this time I had my own unanswered questions
Why did this happen?
Who is to blame?
What went wrong?
Why my son?
What could I have done differently?
For many parents, these questions that will never be answered, they simply sit in our lap taking up space and energy. It can be tiring carrying around unanswered questions and can make it even harder to engage in conversations with doctors and therapists.
Because in this new town, a parent can be speaking one language and the therapists another. The parent wants to know why it happened, while the therapist wants to instruct what can be done. A parent is desperate to know what the future might look like but all the therapist can do is tell of things that might make a difference – to an unknown future.
Parents instinctively do all you can for a child – everything.
We try every new-fangled therapy, medication and specialist piece of equipment. Anything that will make a difference because we want to make it better – we want to fix it.
But before long there is saturation point or at least exhaustion. It isn’t possible to do everything we’ve been advised to do. We only have two hands and twenty-four hours in the day, and we still have to eat and go to the toilet.
It is even harder to be motivated when we feel worn down by unanswered questions.
At every appointment, there is hope that we might be relieved from the weight of one question. Just one ‘why?’ that we can lay to rest, but it rarely comes. Instead I’m given even more suggestions, more advice and it can feel overwhelming.
Sometimes I reminisce of the days back in my old town, where life seemed more simple, easier to understand and I long to go back.
But then a day comes when a therapist instructs me of a therapy that makes sense. Something I feel is achievable. I’m given a reason to do it and it’s a reason that I understand…
Because the future is not yet written
I realise along with the unanswered questions is an unwritten future. One that, as a parent, I can influence. Click on this short animation to see the simple and profound ways postural care can impact the life of a child with complex disabilities; his life and his future.
There are so many unanswered questions that remain. But like it says at the end of the film;
‘I take the advice I’m given, along with the challenges of real life and do the best I can. Because as a parent I can make a difference to my child’s quality of life and future.’
Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading parent workshops as well as training professionals.