20 Sep 2016
The first day back at school photos have faded from social media. The shiny shoes are scuffed and at least one item of uniform is already languishing in the lost property bin. The autumn leaves begin to decorate our streets with a riot of colour and every sunny day now feels like an unexpected gift.
As much as I love the summer, I’m glad it’s autumn. It’s time to collect conkers and pick the last few blackberries. Although I will miss the brighter days and warm sun on my face, the summer is my toughest season.
Most of the year I juggle life well.
My home, my work and my three kids are kept in the air without any major mishaps (mostly). But summer stretches me to the limit. As the teachers’ smiles widen in July, my shoulders begin to sag.
Now don’t get me wrong. I love my kids. Not just in a ‘I’m quite pleased I had them’, kind of way. I’m their biggest fan and number one admirer. They fill my heart every day and put more smiles on my face than I dreamed possible.
Being a mum has turned me into a lioness.
Proud and prominent, I work hard to keep my brood safe and provided for. But, and it is quite a big BUT…this parenting lark (especially the severe disability type) is a truly tough gig. And the six-week summer holidays are hard.
I’ve decided I only have a certain amount of ‘mum’ in me.
I have a portion of smiling, patient, creative ‘mum’ and then I’m done. During term time, this amount of mum is sufficient to see me through. Sometimes, I even get to bath time without completely loosing it. But in the summer, well the summer is a different story. With all of my kids home twenty-four hours a day, my ‘mothering well’ can run dry by midday.
The vast amount of work, and my limited number of hands aren’t the only problem. It is also the increased expectations placed on ‘holiday’ time. On any ‘normal’ week I can go from roaring, protective lioness, to limp and sobbing in the corner; simply because of one professional’s comment. I can be fiercely arguing my son’s needs in one instance and then wondering if I have enough energy to lift a cold cup of tea to my lips the next. But in the summer, expectations are heightened and the gap between my life and others seems even bigger.
I can’t be spontaneous and nip to the beach for the day. I enviously watch other mums sitting together chatting, as their kids play around them. I want to fill my Facebook timeline with lazy summer photos but instead our summer holiday’s feel like the packaging has been mislabelled.
I need to write to the complaints department about false advertising because the summer holidays are seriously lacking in, well, holiday.
The word ‘holiday’ implies rest and recuperation but there isn’t much of that going on. Like Sarah Clayton, from Simple Stuff Works, said at the excellent Got My Back Conference this month, ‘Gravity is still on duty 24/7’. For our complex kids, epilepsy doesn’t have a holiday, neither does reflux nor postural care. The turning, toileting, medications and enteral feeding don’t fly to Spain for the weekend, just because our family want a break.
I have said before that cherishing the summer moments is what life is all about and this year was no different. We had a truly incredible
holiday adventure, traveling through northern Europe. We certainly stacked up some lasting memories and selfies.
However, now it is autumn, my main focus is on having a cup of tea that is still hot. I might even stock up on some of my ‘mum’ reserves (it’s only a few weeks to half term you know).
I just wish the super-rested and over-excited professionals at school would remember that although I love and appreciate their enthusiasm after their long summer break, now that autumn is here – I just want a holiday.
Rachel is a nurse, author 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 workshops with parents as well as training professionals.