Most of my life has felt unremarkable. It is only as I am edging out of my mid-thirties, that I am beginning to feel comfortable in this unexpected life I am living. Like every parent, my world changed the day my son was born, unlike every parent, my heart broke and would never be the same again. Over the last eight years, I have walked a rugged and unpredictable path that has pushed me beyond my limits, making me re-evaluate my life, faith and values.
Today, I spend most of my time looking after my family having just introduced our third boy into the world. When I’m getting paid to work, I don my nurse’s uniform and practice as a nurse specialising in Diabetes in a GP surgery. I pretend to enjoy jogging, whilst sweating and panting around our local area and relax by reading and knitting. When alone my guilty pleasures are eating foods, that I tell my patients are bad for you, whilst watching a chick flick.
Tim – the Husband
Tim and I met at a Christian Camp when we were kids and have been together since we were teenagers. He works as a GP but is most at home when out in the countryside walking through forests, exploring and mucking about. He continues to be my favourite man and the perfect dad to our kids.
Sam had a really rough start when he was born in 2005. After I stopped feeling him move he was delivered by Caesarian and failed to breathe. We never got to the bottom of what happened but he was diagnosed with Grade 2/3 Hypoxic Ischaemic Encephalopathy; those long fancy words basically meant brain damage. The consequential cerebral palsy affects every part of his body.
If you pass him in the street you would see a brown haired boy sitting in a bright orange wheelchair. You may notice he is blind, fed through a tube in his stomach (PEG tube) and struggles to make any functional movements with his limbs.
You are unlikely to notice he has a wide taste in music and is most happy when he is able to control what he is listening to with a switch. As well as this, he also loves swimming and being read stories. He is fussy about most things and doesn’t like anything new. He always has a current list of favourite films and songs.
Since the day he was born, Sam has spent plenty of time in hospital with numerous investigations, appointments and emergency admissions. Life in the last ten years has taught us that nothing stays the same and when one thing appears to be sorted, some other complication replaces it. Life was most unpredictable when Sam was three years old and his complex epilepsy became even more difficult to control. As a result of his severe and prolonged fits Sam receives palliative care because he is not expected to live into adulthood.
JJ was born in 2007 fit and well. He is bright, scatty and talkative. He loves lego, reading, playing and mucking about outside with his dad. Life for him is normal and he gets on with it very well. Recently he has begun to notice the impact of having such a unique older brother.
In April 2015 we welcomed Ethan to the family. It took us a long time to pluck up the courage to have another baby but he’s well worth the wait. He too was very excited about coming and arrived a month early.
Together we make ‘The A Team’
BC (before children) my husband and I loved travelling and had worked in Uganda and New Zealand. We had planned for our family’s future to include living in a developing country, working as a doctor and nurse. Life didn’t turn out as we had expected although there have been many adventures and much goodness along the way.
We love getting out and about as a family, taking Sam’s hippocampe to its limits. We enjoy running and swimming as well as cuddles on the sofa watching TV. We believe it’s all about balance.
Our Pit Crew
We are very lucky to have a band of people around us that keep our family afloat. At the top of the pile are my mum and dad, closely supported by other family members, friends and carers.