When a child is diagnosed with a complex disability, a tidal wave of unanswered questions sweeps through life.
As though, one minute you live in a town that you recognise, one you’ve lived in your whole life. It is a town with familiar faces, understandable street names and identifiable buildings. Then the next minute you’ve been teleported to a place where the landmarks are unfamiliar, the people dress differently and speak another language.
Soon your brain was filled with long words that you can’t pronounce, never mind spell. And in every new conversation with medics more advice is hurled across to your side of the table.
And all this time you carry your own unanswered questions
Why did this happen?
Who is to blame?
Why my son?
What went wrong?
What could I have done differently?
For many of us, these questions will never be answered, we simply carry them around in our emotional back pack. It can be tiring and make it harder to engage in conversations with doctors and therapists.
Because in this new town, parents can be speaking one language and the therapists another. Parents want to know why it happened, and doctors want to tell us what they plan to do. Parents want to know what the future might look like and therapists are focused on explaining therapies that might make a difference – to an unknown future.
Every parent, instinctively does all they can for their child – everything.
We do our best to try every new-fangled therapy, medication and specialist piece of equipment. Anything that will make a difference because we want to make it better – to just fix it.
But before long parents can reach saturation point and 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 loo.
It is even harder to be motivated when we feel worn down by unanswered questions.
Sometimes, I reminisce of the good old days, back in my old town, where life seemed more simple, easier to understand, and I long to go back.
But finally, a day comes when a therapist instructs of a therapy that makes sense, something achievable. With a reason to do it and a reason that could be understood…
Because the future is not yet written
The past can not be changed and the future is not yet written. But parents can influence the script. This short animation produced with Simple Stuff Works, shows the simple and profound way postural care can impact a child; his life and his future.
There remains so many unanswered questions 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.’