‘The weekend presents itself as the toughest part of my week to navigate.
I get that Monday feeling on a Friday afternoon as I try and juggle the expectations and responsibilities that lay in the coming 72 hours. The Commodores classic 1970’s hit song, Easy like a Sunday morning, was on one of the first albums I ever bought. This jazz and soul compilation was indicative of my awkward, younger self desperately searching for who I really was.
Every week, as the weekend approaches, the swaying vocals of ‘Easy like Sunday morning’ seem ever more distant and incompatible with my life now. As the parent of a child with complex needs, my week is upside down.
With ever shrinking appropriate short break provision and rejected requests for support, I am left juggling limited energy, the desire for quality family time, the need for rest, heightened expectations and just wanting a glimpse of normality for all our family.
This series of images captured by Nicola Parry at 8am one Sunday morning as a part of a larger project share the reality of what ‘easy’ looks for families like mine.’ – Rachel
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- “You know I’ve done all I can” – Every small part of my son’s life is reliant on others. Aged 12 he as dependent as the day he was born but more complex than a typical newborn.
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- “You see I begged, stole, and I borrowed (yeah)” – With reduced social care support, we are reliant on charities, family and friends. We are lucky to have a strong marriage and support network – this is a team effort.
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- “I wanna be free to know the things I do are right” – Like every other parent, we just want to know we are doing the right thing. But for us, the fighting only stops when one of us dies.
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- “Why in the world would anybody put chains on me?” – The truth is, for those with disabilities, it is often the world who puts the chains on. It is the failing facilities, stairs that limit access and we all just want our children to be free. Free to be who they are. As parent’s we want to know they things we do are right.
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- “I’m not happy when I try to fake it. No!” – S lies down for a shower because standing is over rated. He has medications syringed into him whilst at church, or shopping centre. Food is given via a pump and tube in his stomach.
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- “Know it sounds funny but, I just can’t stand the pain. Girl, I’m leaving you tomorrow” – Some families do get to breaking point for a wide range of complicated reason. There have been dark moments of wondering about leaving but they have never lasted long. Like so many parents, despite the challenges, the beauty of loving sustains us.
Photographer, Nicola Parry explains:
The aim of my project was to document the realities of an ‘everyday’ which for some, is a much greater struggle than for the rest of us.
I have taken away a great deal from my experience but most affecting has been the realization that the ‘difference’ I have observed is permanent. This is not a difference in terms of the love, fun and laughter, or in terms of nagging children to get their homework done and help out with chores; but in terms of the huge level of responsibility and necessity to be available, alert and organised every waking moment – as well as some moments when not awake.
I hope my images will provoke thought and consideration and help to raise awareness of the secret lives of others.
For more about Rachel’s Secret Life and Nicola’s work, please see our previous post and visit Rachel’s blog and Nicola’s website and blog.
