Rocks on the Track

On Tuesday we had the pleasure of celebrating Evelyn’s first birthday. We woke at 0800 and got everything ready for her special day. Balloons had to be inflated, banners hung and presents arranged for her to get stuck in to. We felt lucky to be at home as opposed to marking this momentous occasion in hospital. 

We brought our princess downstairs, the look of confusion at all of the colours was priceless. We sat cross legged in front of the pile of gifts and began opening them. I don’t know who was the most excited. 

Three presents in, Evelyn needed a nap. The chemotherapy drugs had been taking their toll resulting in sickness and fatigue. We took her to her cot to rest, ready to open the rest of her gifts. 

Upon waking, we continued with her birthday treats. Our princess seemed to enjoy the wrapping paper and boxes more than the toys. My elation at seeing her so happy made me cry. My beautiful girl was having such fun and the moment was shared only by my wife and myself. 

Her birthday was great fun. She stayed on top form, needing regular medication and tube feeds. She went to bed and allowed us some recuperation time; looking after her is an absolute joy but it takes its toll both physically and mentally. Exhaustion is our new best friend, sleep deprivation our colleague and discomfort our burden. But I would happily walk into hell and back just to see my girl happy. 

Wednesday was my first day back in work. The stresses of business seeming so small in comparison to the worries at home. The day passed slowly, thoughts of home filling my head. All I wanted was to hold my girl. 

It wasn’t until the early hours of Thursday that we stumbled. Evelyn’s temperature spiked at over 38 degrees, warranting a trip to hospital. Immediately she was isolated until a suitable space could be found. 

Our current home is a segregated room on the burns unit due to a lack of beds on the oncology wards. This room, filled with frightening looking machines and equipment will serve as home base until we have proof that there is no infection present. 

It’s nice to have space to yourself but it doesn’t take long for loneliness to kick in. You feel cut off from the world, restricted in what you can do and who you can talk to. 

Recent experience has changed my nature completely. Once outgoing, I am introverted. Once open, I am now defensive. My life is now devoted to Evelyn. Everything else is secondary. All of my joy, all of my happiness is drawn from my girl. I know it’s unhealthy to live solely for one purpose but I have no intention of changing my outlook. She used to be a large part of my life, now she is all of it. 


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