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The First 12 Weeks – Wednesday September 12th 2014

This time twelve weeks ago it became apparent that the course of our life was about to take a terrible turn and, as events quickly transpired, change our lives and the lives of our family for ever. It was my night off from the hospital. I had come home for a rest. Hospital life was moderately stressful but we were kind of in a groove with it and a couple of girlfriends had come over with a bottle of pink to give me a little down time. It’s not that we weren’t worried about Oscar because we were. He had changed that week and was sleeping a lot. And when he wasn’t sleeping he was connected up to a drip, because he was off his food, and also a pump for long periods of time for the antibiotics. The administration of these clearly caused him a lot of discomfort and for some reason he was always worse at night. On that night he was yelping with pain and the nurse on duty called me in because Holly was having a sleep over with my parents and so I might as well be with David. When I arrived it was very frightening. There were few experts around because it was evening time. Time appeared to pass very very slowly. We seemed always to be waiting for a porter for a scan or for someone from HDU or something. It is just too painful to write down how it all played out. We never had any real sense that there was major life saving activity going on like you see on the tele. It was all very calm and quiet and Oscar was being monitored. As the night went on David and I became increasingly frightened but we were unsure how frightened we should be. He had had a CT scan around 11pm. The results of which we had been informed were clear. He was then, finally transferred down to the high dependence unit and then to the intensive care unit. Just having your child in intensive care and being wheeled off for scans is terrifying enough, never mind if there is a prospect that they may become seriously ill or worse. We just sat in waiting rooms and waited.

At seven ‘o’ clock the next morning the intensive care consultant came in and told us that they did not know why but that Oscar had suffered massive brain swelling between the first scan at 11pm and a second CT scan that they had taken around 4am, and that we were probably not going to be taking him home. The message was clear but not 100% absolute. The neurological consultant would not be at work until later and they were the ones to interpret the scans that had been done in the night. In the meantime we had to call our parents, tell them that Oscar was dying and ask them to come to the hospital. They were surreal conversations. I don’t know why I didn’t vomit at the time because that’s what my body wanted to do and has felt like doing for most of the past 12 weeks. The day passed by in the manner of a never ending, utterly terrifying horror movie or bad dream. Eventually we were shown the scans and it was immediately clear to our untrained eyes that Oscar was brain dead. As the consultant put it, “Everything that made Oscar Oscar has gone”. Brutal to hear at the time but actually really helpful. We decided that it was essential for Holly to say goodbye to Oscar so we made arrangements for her to come in. Our brothers were with us by now too, except for one of David’s brothers who was still on his honeymoon. We asked to see a hospital psychiatrist for advice on how to tell a child that her brother is dead. We were told that she was in a workshop and unavailable until midday. Given that the sudden and unexplained death of a child at this age (you do tend to feel that once you’ve got through child birth and the first year you should probably be ok) is so very unusual, being too busy for us felt like a strange prioritisation and very insensitive. Having said that the advice was extremely helpful when we got it. It was all about being very clear with Holly and not using fluffy words.

After we took Hols in to say goodbye to Oscar everyone else said their last goodbyes and left David and I to be alone with Oscar. We didn’t spend a huge amount more time with him. No more than a couple of hours. What could we do… it didn’t feel like he was there anymore anyway. His head was cold. And it was dinnertime for Holly and we felt that on the day her brother died it was important for Mummy and Daddy to be home to put her to bed. So we said goodbye to Oscar. They removed all the wires and we held him in our arms together. He lay on our laps until his heart beat its last beat. I’m not sure I’ll ever feel the same about the beat of a heart. I felt Holly’s heart beat racing this week as she caught her breath whilst learning to swim. I was really aware of the actuality of a little vital organ inside her body… the vitality of that compared to the declining beats of Oscar’s heart that day. Eventually we tore ourselves away from him, turned around, picked up our bags and walked out of the hospital alone.

So twelve weeks on our life is completely changed and I wonder to myself how have we got here, how we have managed and how we hope to cope for the rest of our lives. When we were still in hospital we realised we had to get through it together to survive. The shock that in a flash we had lost Oscar and all our dreams of spending our lives together with him and Holly was, and still is, monumental. We were, and still are, so desperately wanting to turn back the clock. We stood by his side staring at him, smelling his skin, searching for his breath on our faces. I can still close my eyes and breathe in very sharply through my mouth and imagine that that breath is his.

We arranged counselling on the first day after he died. The Chaplain from Helen and Douglas House came over straight away and was very calming. We figured this was a life experience we were not qualified to go through alone. We consciously accepted help from anyone who offered it. We literally got through one day at a time. Especially in the beginning a day was so long. We learned that there were things that were good for us and things that were bad for us. Waking up is one of the hardest times of day. When you open your eyes and realise that yes, this is the reality that is your life. In the first week after Oscar died one of us would get Holly when she got up, we’d put kids tele on and hide our heads under our pillows, just stretching an arm out to press the buttons for another episode of Peppa Pig. It was horrific. And to top it off Holly’s behaviour that week was a nightmare. We have discovered that this is one of the tough situations to deal with, when you are devastated by the loss of one child whilst managing a three year old’s melt down. We realised that part of the problem was Holly reflecting ourselves. So after one week we made ourselves clamber out of bed in the morning and actually be in the present with Holly which made all of us happier. Not consciously but looking back on it now, we find that forcing our minds into the present with Holly, or any situation, enables us to survive. Because when we are completely tuned into her, or another activity, we can’t bask in our sorrows.

We keep moving. We don’t stop much because it hurts too much when we do. I started running more and I did it most mornings because I’d discovered it was the worst part of my day. I just rolled out of bed straight into my trainers and ran down the road with tears streaming down my cheeks. Then on the homebound straight I would try to push my thoughts into something positive. In the beginning we did decide to write down one positive thought each day. We didn’t carry that through but it is part of how we cope. We do appreciate the smallest of things.

Regardless of the cause what has happened is totally tragic. It is devastating and appalling and heartbreaking and intolerably, unbearably sad. But thinking about it from that point of view just makes things worse. And that is why thinking positively, being committed to a new life, that recognises Oscar but is different to our old one, distracting ourselves by massive fundraising in his memory and to prevent others going through this, is our way of managing.

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