From the moment we went into hospital, control was taken out of our hands and we relied so heavily on the expertise and knowledge of the doctors and nurses around us. Thomas became entirely dependant upon the care of the staff, something which only I had previously been able to give him. We felt uneasy not knowing how to physically touch him with all the wires on him. Our emotions were in turmoil, with the highs of hope and the deepest depths of despair, so much of our time and energy was put into confronting the ever-changing challenges and trying to make sense of it all.
As a full time mother, I was suddenly separated from our other children for a long period of time when they were still so young and dependent upon me - I felt torn between them and Thomas.
During our stay in hospital, we were geographically separated from our friends and family and lived in our own little bubble, away from normality, home life and the outside world. The environment was so far from what we knew, it was very alien and clinical.
We were very thankful, in that we had access to Thomas 24 hours a day. On a practical level, our routine was built around mealtimes and times for me to express. Our finances were becoming tight with the cost of meals, car parking and the fuel costs for Jason to drive back and forth between home, children and the hospital.
We felt very grateful to have been given a bedroom just across the main hallway to where Thomas was, but we had to take our belongings out of the room every morning and hand in our key in order for the rooms to be cleaned and reallocated. This was quite unsettling as we never felt that we could base ourselves anywhere long enough to make homely and we couldn't always access our belongings during the day. We were living out of a rather jumbled bag.
On the ward there were new nurses and doctors regularly coming and going, although there were a few that became a little more familiar. We cannot praise highly enough the care and concern they all showed towards not only Thomas but Jason and I and our family who managed to visit.
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