Could you do it, if it was asked of you?

Jack finally has his new button peg. He didn't get it done in Edinburgh after all as it turned out to be too big so they had to order another one, have it sent to the house and I put it in myself. So now 11 months on, we have come full circle.

Finally.....a cute little button peg

We, as a family, have been through so much in those 11 months. Holly and I have been separated for the first time in a crisis and that was so so hard as she is my rock and I am hers.

Jack suffered two episodes where he had over a hundred seizures in one day, had aspiration pneumonia twice, oesophagitis, gastritis, suffered endless pain, was covered in bruises after thrashing around in agony, numerous operations, endless needles and drips, was rushed to HDU 4 times and stopped breathing so many times, that I lost count. Add to that a broken leg and 3 months in plaster and it's enough to turn anyone into a raging alcoholic!

After the first episode in Edinburgh, Jack's Neurologist gently brought up the subject of filling in a CYPADM form. This is a form which the parents fill in, with the help of the child's specialist, to record their wishes should an acute deterioration happen again. I said that I would definitely think about it and they informed Rachel House (children's Hospice) that I was open to discussion but when I was there we never got around to it.

After this second episode of acute deterioration the subject was gently brought up again but this time they put the discussion into action. I was introduced to the palliative care nurse Katrina and we went somewhere private, along with Michelle (epilepsy nurse) and she very gently explained what these forms were and why it was important for me to fill them in. There were lots of tears as I tried hard to be brave but I truly felt that my heart was breaking. I didn't want to deal with this on top of everything else I had coped with but I knew that it was the right thing to do. I was given the forms to take away to look over and we would fill them in together the week after.

Jack, at one of his lowest points.....not a well boy.

I was due to go home and see Holly that day so for most of the time I was away, I refused to look at the forms but then it was time to go back to the hospital so I broached the subject of them with Holly and I explained what they were for. We cried lots of tears but together we made decisions on what we would want for Jack if we were faced with this again.

The day after I got back, Granny Mac and I had nipped up town along with Jack's key worker, Helen, from Rachel House. She was there to give me some support and as it was a sunny day, we took off for an hour. We hadn't gone far when I got a phone call from the ward saying that the Neurologist wanted to meet with me at 2.30pm re this first form so we took a taxi back to the hospital. I felt sick. Granny Mac and Helen went to a nearby café while I went back to the ward. I sat there for an hour before they came and by then I could feel myself shaking and I couldn't get warm.

The CYPADM form has only two sides to it so you would think that it wouldn't take long to fill in but it did. Both Ailsa (neurologist) and Celia (epilepsy nurse) gently explained what this form meant, that it was a record of my wishes at this time but could be changed in the future and that it would be sent to all the health authorities involved in Jack's care, Rachel House, respite and Jack had to have this form with him at all times.

They went over what full resuscitation meant, at my request, so that I was sure that I knew what was involved and then I had to tick the intervention that I wanted medical staff to take and anything else was scored out. I also had to decide what to do if we were in an ambulance and he was unlikely to survive the journey. Did I want to take him home or go to the hospital? If he was in hospital and there was nothing more they could do, did I want to take him home or go to Rachel House if it were nearer?

There were tears but not many cos I was holding myself together by sheer will and when I finally walked out of there, I was drained.

I headed back to meet Granny Mac and Helen. When I arrived Granny Mac was distraught as I had been away over two hours. She kept saying that she should have been with me but I had wanted to do this alone because I couldn't take her feelings into consideration in this. I had to do what was right for Jack.

A few days later, Katrina (palliative care nurse) and Celia (epilepsy nurse) came to get me to fill in the final form. This form was a hell of a lot harder to deal with. You had to say what would happen if Jack was at home and the end was close. Who you wanted there, who you nominated to let everyone know what was happening, which funeral company you wanted to use right down to what went in the coffin with him. As hard as the form was, it also focused on the kind of life I wanted for Jack whilst he was still with us and how we could achieve it. Again there were tears and at times I struggled to speak but we got there in the end.

I left that room wanting to be anywhere else but in that hospital so I grabbed Granny Mac and left. We headed out for lunch but to be honest, the last thing I wanted was to eat but I went through the motions cos that's what you do. Afterwards, heading back to the hospital, I told granny Mac I wasn't going back, that I needed to get away. I didn't know where I was going, I was just going to walk.

I just couldn't go back into that ward and play with Jack after what I had just done, it didn't seem right. He would have known that I was distraught and I didn't want him to see me like that. It also felt wrong somehow to be making these decisions at a time when he was so well!

Jack, well and looking good

I cried all the way into Edinburgh city centre but I felt a little calmer after I had walked a while.

I wandered aimlessly for a few hours and was accosted by a young charity collector for Unicef. I told him that I seriously didn't have any money cos it was costing me a fortune to stay at the hospital, that I already supported Unicef and tried to get away. He must have sensed how distraught I was cos he opened his arms and said "Do you want a hug?". I just stood and looked at him, then walked into his arms. It was the most surreal moment I have had in a long time. He held me for what seemed like ages, then he stepped back, wished me luck and let me go.

I will never forget the kindness of that man. I felt a little better after and then I walked some more. I ended up in the Chocolate Lounge at Harvey Nichols department store, where I had the biggest piece of carrot cake I had seen in a while and a huge mug of hot chocolate. Comfort food if ever there was such a thing.

Pic from here along with recipe

I arrived back in the ward around 6.30pm after being awol for over 6 hours to be met by a worried and slightly frantic Granny Mac.

The next day, I met Celia in the corridor and she said "I think we broke you yesterday". I just nodded cos that was the understatement of the bloody year!

That was February. In July, we had a visit from the chaplain from Rachel House. Those of you who know me well, will know that I am more spiritual than religious. I get on brilliantly with this chaplain because he doesn't preach to me, he accepts me for who I am.

We discussed these forms that I had filled in and I broke down again while telling him what mine and Holly's wishes were for Jack and you know what he said?

He said that in order to make those decisions you have to love someone unconditionally and that means putting your own feelings aside and thinking of only them. It made me feel slightly better.

Whatever it is, it was one of the hardest things I have ever had to do.