Where I was in your final hours

You whimpered when we touched you, so I drew back. It was hard to hear that whimper as anything but discomfort, hard to imagine it was a choked purr. You were not calling us and we were so tired and we took a little respite. You were deeply sedated. And I was building your website. Because I loved you and wanted others to see you. Because I didn't know what else to do. Because I didn't want to look at your beautiful face swollen and yellow, your belly so distended, your failing organs congealing so that blood no longer flowed as it had the last week. Your granny and grampy and bubby spent time with you. We dropped in. So much preparation went into bringing you home but a year and a half later I still think about those last hours and ask what else could I have done beside upload pictures and write your story. That was OK, but not for most of your last day. You died as we sang you a song, as if you had waited and I am grateful I held you when you let out your final breath.

How does the palliative care community approach family preparations for their children and siblings final hours? At the beginning we were taken through all the signposts marking the end of life. Afterward we dressed her and I carried Sasha to the mortuary vehicle. Everything was, it seemed, as respectful and dignified and family-centred as could be under the circumstances. And when I look at a support network sheet on the final end of life information or a sensitive and detailed parent account of living with very sick children there is no mention of what parents do during the death of their child. When the breathing becomes very laboured and a nurse or doctor comes to increase the sedatives, that is a good time, if not before, to touch the parents with the moment if they are lost in grief. So they are there. Not on the computer.

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