Arjun did not die ( this time). He fought through and survived, but not for long. I think we had lulled ourselves into a false sense of security again, he had recovered, he always recovers so what was all the fuss about? The reality is that this is not how anybody would be living their lives, living each and everyday watching out for signs of deterioration and death; waiting to see if he has changed in his colour or breathing pattern, always on high alert in the eventuality that I will be called away from work ( yes, I work), or a day out with the girls or, family function will be cut short so we can attend another emergency.
It is not fair; it is not normal.
Well, only 48hrs after the first episode Arjun was taken ill again, his body had started to shut down but this time he was at home.Arjun’s carer had stayed at home with him in the morning because he was still not well enough to attend school, the previous days’ illness had really taken its toll. I was due to return home at lunchtime after working half day to take over his care. The school I worked at had been quite accommodating on this occasion and I was granted half day compassionate leave. I had thought he was in recovery and that I would be returning home to a sleepy but ‘well’ boy, who just required fluids , but once again I was being naive or hopeful, some may say I was in denial.
In many ways, I spend a lot of my life discussing Arjun’s death in such a matter of fact way that it is like looking into strangers life. Increasingly I find myself engaging in conversations which I know are difficult for people around me when using vocabulary such as death, dying and life-limiting that are challenging for most. In addition I am supporting family, friends and loved ones with the inevitability of losing Arjun, but this does not always mean that I am coping myself. In fact recently, new friends and fellow Trustees of our charity The Rainbow Fund pointed out that I spend a great deal of my time helping others but who helps me? The reality is that I ‘just get on with it’, but from my recent post ‘The Black Dog’ it is evident that I probably need more help than I think.
This has been the first time since Arjun was born that I actually realised the enormity of the sadness and heartache that I have carried for 14 years.
On this second occasion I think the period of watching him actually deteriorate in front of me in 48hrs really hit home. Our automatic, primal instinct is to rush in with all our strength and passion to save life no matter what, sometimes this is just not possible or right.
Arjun was at home, I watched calm and settled before we had to make the decision to take him to Martin House Children’s Hospice or keep him home. This was the first timeI felt at ease and calm about his death, somehow I felt ready for him to die. My heart no longer ached, instead there seemed to be a sense of relief and acceptance that he would no longer suffer. I decided to get in to bed with him,
I opened his bedroom door wide open, the sun drenched in and the angelic chatting of the birds sang in our ours. Arjun lay in my arms, his head resting on my breast as he once did as a baby; for once, I knew that if he died now he and I would be ta peace. We had and have done everything in our power to give him the best love, care and life we could.