There is more to me than you can see.
I don’t show my vulnerabilities because that is not how it should be.
But when I dare to look into your eyes, I know you are a lot like me.
I wake in the night, worrying about what more I should do,
but you only get to experience the aftermath of my tired and ineffective mind.
I neglect my family to complete tasks,
but you only see the job left unfinished.
I send emails and argue for funding,
but the only evidence of my hard work is essential equipment not yet provided.
I get to the end of the day stressed, fraught, exhausted and drained,
but all you might hear is a terse and snappy voice.
Please know, I do what I do because I care.
I’m determined because of love.
I’m hard working because of beautiful children with a whole range of complex needs.
I feel squeezed by an opaque and under-resourced system but I carry on.
Every day, I come in to work and do my best.
Some days, I just wish you could see all of me.
Your paid professional
As the parent of a child with complex needs, I know first-hand the hard end of closed doors, resources not being granted, ineffective systems, unhelpful and frustrating staff. But as a healthcare professional, I also know what it is like to step into your work shoes open the consulting room door with every good intentions and still fail.
Fail because of underfunded services.
Fail because of my own mistakes and frailty as a human being.
Fail because of not enough time and too many jobs.
I have met people and wondered why on earth they do the work they do. Some people simply aren’t very good in the role they find themselves in. But the majority of the time, I am confident the practitioners who walk through my door and try to support my family do so as best they can, in the circumstances they have, with the resources available.
Often systems fail but at the heart of every system lies people – and generally those people are working damn hard. I’m convinced both parents and practitioners spend a lot of time and energy second guessing each other, thrusting stakes in the ground and gearing up for complaints. Dreaming up everything that might be going on behind their respective doors.
But maybe it could be different
What if we all dared to show our humanity?
Look into the whites of each other’s eye and believed we were all doing our best.
What if we recognised our similarities?
Then concentrated on #bridgingthegap; knowing there isn’t ‘Us’ and ‘Them’ but ‘We’ who want the best for our children.
What if we worked together?
Combining our energies against systems that fail and funding that falls short rather than each other.
I am determined to start every conversation holding tightly on to the hope of collaboration. I am hopeful in #bridgingthegap between our family and the professionals supporting us. But when the potential for co-production is snatched from my grip, I will assert our needs and stand strong for the rights of my children.
Yet in it all, I always will aim to be clear with my expectations, assume competence and be kind – because I do not know what battles the other person is facing.
At the end of the day, we are all human living in front of and behind closed doors.
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