Wednesday 19th October, 2016
When we arrived I first took the children into the waiting room. I never knew what to expect when I arrived at ITU each day. In theory, by visiting time the doctors had finished their rounds and most of the nurses' duties for the day had been taken care of. They would only take care of the tasks that had to be done hourly or were completely necessary during the times when visitors came. Still, Marc was fairly immobile and needed to be turned or rolled in the bed every couple of hours to prevent bed sores developing, and I didn't want to burst in with the children and see the curtains closed around the bed.
I left the children with their nana in the waiting room and buzzed the door to go in. All was well: Marc seemed quite bright, was still off the Drager and was having no procedures at that current moment. As a bonus, the rest of the ward seemed calm (well as calm as ITU ever gets.) I spoke to Marc for a moment, as well as the nurse on duty, checking that it was still ok to bring the children in. I probably brought some chairs across to the bed for us to sit on, and reminded Marc that Dan and Amy were here to visit. Once I knew that all was well and in place, I went back out to bring them in.
We entered the ward, the three of us together, and I was more nervous than I had been in a long time. Both children were quiet, and stared around, wildly curious, as we walked in. I saw the ward through their eyes: a large open space filled with a multitude of machines they didn't understand, the walls lined with large, metal-framed beds which held a myriad of elderly, extremely sick looking patients. They didn't cry, try to leave or ask any questions. Instead, they allowed me to lead them to their dad's bed, where his nurse was waiting to greet them with a friendly smile.
Marc's face was amazing. He glowed with more happiness than I had seen from him in a long time. I couldn't make him happy like this. When I visited he could show me his real feelings, admit if he was depressed or unhappy or in pain. He relied on me to make things better for him, to support him through the tough times on the Drager or when he was feeling exhausted after a physio session. He didn't have to put on any kind of show. For any other visitors he did try and appear as though he were getting better, making progress, happy to see them, even when perhaps he wasn't.
But for the children, he simply lit up.
Missing him for a month
They, on the other hand, found him strange. I believe that children who go long periods of time without seeing a parent, perhaps a father who works on an oil rig at sea or serves in the armed forces and is away for prolonged periods of time, are shy when they see that parent again. Like a distant relative they only see twice a year, they take a while to warm up to them, and affection, feeling comfortable around that person only returns gradually. That was definitely one of the factors at play with Marc and the children. They had gone from seeing him every single day to missing him for a month and had adapted accordingly.
But also there was the fact that their dad looked nothing like the dad they knew. My mum tells a story about me as a child, pelting into mum and dad's bedroom in the morning as I always did and flinging myself into bed next to my dad. He had been playing hockey in a match the previous evening and had received a hockey puck or a stick in the eye. Consequently he looked a right mess: the whole of his eye socket swollen and purple. The minute I saw his face, I screamed and ran around to the other side of the bed where I promptly howled in my mum's arms for a good twenty minutes. I was scared of my dad because I did not recognise him as the dad that I knew.
A huge shock to the system
And Marc looked awful still: skeletal, with skin hanging off him, pale, and with healing wounds in all sorts of places from the different tubes he had been receiving treatment through. A hole in his neck with a plastic tube sticking out. A thin tube running up his nose which looked brown on account of the food substitute being sent through it. Tape to hold that tube in place. Added to that, he couldn't speak and could barely lift his head to look at the children. The staff had talked about trying to sit him in a chair when they first visited, but he wasn't strong enough. So the man that the children were faced with was not anyone they recognised as their dad.
To give them enormous credit, there were no dramatic reactions. They didn't get upset or try to leave. They dutifully came to the bedside, sat down when instructed to and shyly answered any questions the nurse asked them. Marc smiled at them and listened to their replies. I remember asking them to tell Daddy all about what they had been doing, and desperately trying to keep up some kind of conversation so that the visit would seem normal, when in reality it could never have been that.
Several other members of the team came across and made the effort to say hello, partly probably because they had seen the children's photographs on the end of the bed and were curious, but also, I believe, out of a desire to make the visit easier for them: more friendly and less alien. Marc's main physio, Jo, made a huge point of being very friendly, of trying to explain what her job was and some of the things she had been helping Marc to try and do. I found myself gesturing to the different machines and trying to explain their purpose, telling them what the tubes were helping Daddy to do, but I'm not sure how much of it was understood or went in. Both children did a lot of staring at Marc, or staring around the ward at the other patients, despite me trying to persuade them that it might be seen as rude to stare at people, especially when they were ill.
In the end I resorted to the diary, explaining what it was for and gently trying to say that they could write something in it, as they were the ones visiting Daddy today. Amy was only four at the time, but I told her she could draw a picture, and I said that Dan (who was in Year Two) could write a message or draw a picture for him: whatever they wanted. I had imagined that one of them could draw while the other chatted quietly with Marc and I, and then they could swap. What actually happened was that Daniel began to write a beautifully well meant "Get Well Soon Daddy" message in bubble writing, and promptly descended into a complete meltdown because he couldn't get one of the letters just right.
Despite several attempts to erase his mistake with a rubber and much effort to redo the lettering, he kept making the same mistake and was pretty much howling on my lap by the time he had managed just over half of the letters. I realise that the meltdown was not due to his imperfect calligraphy, but more linked to his inability to cope with seeing his dad like this, but it did make things quite difficult. Amy, who had been fine up until this point, began to show some signs of distress, as she didn't understand why Daniel was crying.
I was very aware of the many, many sick people around us who would not appreciate the deafening sound of a crying seven year old in the usually muted atmosphere of the ITU. I also didn't want Marc to be upset by the fact that his children were distressed by the visit. I didn't think it would do his own self esteem any good. Finally, and perhaps most vitally, I was very concerned about Daniel's state of mind.
I tried to suggest that Dan and Amy could have a break from sitting inside the ward, go and draw in the diary out in the waiting room and perhaps go for a walk with Nana to pick up some crisps and a drink. Although this seemed like a sensible solution, Dan was at the point of no return and I ended up almost having to drag him out of the ward, pencil clutched in hand, determined to get the lettering perfect on Daddy's message. We spent several minutes trying to further reassure him that Daddy didn't care what the message looked like, he only cared that Dan had come to see him, to no avail.
Keeping their mind off things
Eventually I left them both in Linda's care, and she did take them for a walk and bought them some treats to settle them and keep their mind off things. She was far more able to do this than I was at this point. I returned to Marc and attempted to save the situation, reassuring him that this was just a first reaction and that, in time, the children would come to terms with the way he was and be more able to visit comfortably. That his condition was temporary, and that every time we visited things had improved just a little bit. I also apologised profusely to the ITU staff for the disturbance. They were wonderful and said it didn't matter a bit.
When the children came back from their walk they were calmer, and managed to pop into the ward once more, to show their dad what they had drawn for him and the messages they had written. He managed to convey without words how thrilled he was with both their visit and their artwork in his diary. I think we did a lot of me asking questions or phrasing statements and him nodding and shaking his head to indicate his answer. Either way, we managed to communicate to the children that their dad was ok. Not perfect, but ok, and would only get better from this point.
Amy was fine with the majority of the visit, perhaps because she was so much younger and understood less what was going on. She is also far better at dealing with medical issues, far less bothered than her brother, and has been known to 'play nurse' and help Marc with dressings and so on since he came home from hospital. Dan, on the other hand, finds this kind of thing quite difficult. He doesn't like anything gory and is quite squeamish about any cuts, scrapes or wounds. So I imagine seeing his dad so weak was a shock. He also confided to his nana that he didn't like the tube up Daddy's nose, and I wondered if that was the main element of the visit which had upset him.
Overall, the visit wasn't entirely a success, but the children had to come and see Marc at some point, and I was glad in the end to have conquered the initial visit and have it end fairly calmly. By the time the children next came, I am happy to report that things had improved for Marc quite a bit and thankfully they were able to see more of the 'old' Daddy again.