I woke up on my Wedding Anniversary and it just wasn't the same. There was no special little presents exchanged and no feeling of excitement for a special day it all felt wrong.
True to her word our nurse ushered us out to have breakfast in the cafe down in the big wide world. We didn't want to leave Cameron so we walked rather quickly down but once we'd sat down and tucked into a hearty cooked breakfast we started to relax. We sat and chatted for a little while over fresh brewed coffee and enjoyed a little normality. But eventually our minds wandered and we became anxious again so back we went.
We sat in our room watching the world go by. All we could really do for Cameron was change his clothes and even that was difficult because of all the lines and cords. He had one particular line which entered his body on his shoulder and was called a central line. This administered all his medications and sat right where the shoulder of any top would go. We pondered for a while how we were going to dress him because we wanted to get him into some normal clothes. We wanted him to feel pyjamas for night time and day clothes for daytime. Maybe these little things would awaken his senses.
After a few experiments we realized that he had tops which had press studs on the shoulder and as long as the opening was on the correct shoulder we could dress him and leave the opening open. Success at last. Various family members went in search of tops to fit our criteria.
You try to create a little bit of normality and putting Cameron in his own clothes was part of this. Nappies were another way. We could have used the hospitals nappies but they weren’t as effective as the brand we used and loved so as soon Cameron was free of his catheter we had people bring in our own nappies.
Having Cameron’s own clothes and nappies was a little way of taking back some control. We no longer had any control over our son and our own lives. It was all gone. No home, no job, even our Cameron was gone, nothing was normal.
I couldn't sleep when I was tired, I couldn't eat unless someone brought me food and if I needed to heat it I had to wait until a nurse was free to heat it up in the microwave because I wasn't allowed in the nurses kitchen. I had to wait for someone to wash my clothes for me - if I ran out, I ran out. I could receive phone calls if they were from friends who lived in the country or immediate family members but I had to stand in the passage where I was within earshot of the whole ward and I had to leave the ward to make a phone call.
It was challenging but it certainly made me realize what was important in my life and who I could rely on to be there for me. If it hadn't been for my mother and Michael's mother I would have found life a lot harder. They brought me food and washed my clothes - the essentials of life.
As my story goes on you will meet other amazing people who each helped me to survive my challenges.