A life in my Hands

November 14, 2012 § 1 Comment

My husband has seemingly dusted himself off and moved on in life, embracing Robin’s health and the return of regular family rhythms with joy. I wish so deeply I was the same. For me, going to the beach or on any spontaneous family adventures now feel like huge, hard-won freedoms.

As Robin’s health improves, I find myself thinking over the past six months, pondering the many ways in which his illness changed our lives.  Once we returned home from hospital many people assumed it was over, that he was recovered.  I found myself explaining over and over again the nature of his illness and that leaving hospital was just the beginning of his healing.

In some ways hospital was the easy part. Nurses and Doctors were around all the time.  I found his coughing episodes very distressing and preferred to have someone in the room with me, even though I quickly learnt how to support Robin on my own.  I was there with Robin almost all the time, and had nothing else to focus on except him.

But once we were home…. like a stone dropped into still water the shock of how things would need to change became apparent straight away, with ripples of adjustment continuing on. Deeper issues, dredged from the depths, kept surfacing for weeks and months afterward. Now we were home it was down to us, well, mostly, to me. Just me. This tiny, struggling life was now in my hands. I felt I was now solely responsible for keeping Robin alive; a heavy, heavy feeling. During our second stay in hospital I learnt that the Doctors had really pushed for Robin to go home the first time – pushed him physically to prompt his body to manage the coughing. In light of this revelation, I don’t think my heavy sense of responsibility was misplaced.

The biggest change was that Robin could never be left alone.  Ever.  Not even for a quick visit to the toilet. If he began to cough, someone needed to be there within a few seconds.  It meant no playing outside with the other kids if he was asleep, or even hanging out the washing, or going to the letterbox. But more than this, it meant no going for walks, or to the park, or even to the shops if Robin was tired. He needed to stay at home and sleep 95% of the time. We put a cot in the living area for him to sleep in during the day. The bedroom proved too far away: by the time I heard him coughing and got to him he was turning a little blue.

I found in hospital that I always knew about two seconds in advance when he was going to begin coughing, and this connection continued at home.  The kids caught on quickly and would call out – “Mum the baby’s having a cough!”. The boys, being 9 and 13, learnt to sit him up and support him until Sol or I got there. The ‘coughing baby’ made its way into the imaginative play of the girls (5 and 2).

I suppose this was their way of processing events, but it triggered sadness within me. So sad that the joyous, uncomplicated babyhood we began with suddenly changed into a life-threatening, adrenaline and anxiety charged existence.


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§ One Response to A life in my Hands

  • Yia says:

    Such a deep heartfelt expression of such challenge…. you have been so courageous and resilient through this painful journey….he is such an amazing being,,, all that meet him love him instantly.
    hopefully as life unfolds its story the deeper meaning of this experience will reveal itself….to open the flood gates of grief is painful yet healing.
    You are a powerful wise woman in the making, having the courage to express the deep vulnerable wounds is strength making…. wishing you love always Yia

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