We’re still here. It’s been a week. I think, under the circumstances, and perhaps compared to my expectations, we’re doing alright.

We are drinking more tea than you would dream possible. If Mrs Doyle from “Father Ted” were here she’d be having a field day. We’re busy. The boys make that a certainty. We’ve had a couple of days with them out of the house all day, which has meant we can immerse ourselves in Elijah more, and deal with the inevitable formalities. We have made important decisions and made plans.

It’s clear to me that everybody’s experience of this time is very different. It’s going to change over the days and weeks, and I’m learning not to expect how I should feel. It’s proving to be a very hard and heavy but special time at the moment. I’m grateful for some space to be with James and the boys so we can be how we need to be. At the same time friends have popped in to drop off dinner and baked items and cards and plants and trees and newly learned songs, tissues and love. We’ve been listening to some of our favourite music, there’s been photos, slow dancing, black humour and tears. We are in a little bubble, but we have registered his death, and we have planned all the necessaries with the funeral directors.

The Funeral will be next Thursday afternoon (16th May) at 2pm at the United Reformed Church on the corner of Chesterfield Rd/Beeton Rd. Although it is being held in a church building, it will not be a religious ceremony. We’d like anyone who feels they’d like to come to come. If you need to bring children, please feel that you can, Jonah and Amos will be there. There will be a room for them to play if they need to. Everyone is welcome. We are having a small family burial in the morning, the afternoon will be music, photos and some words from James and I.

We will be having drinks and some food back at our house afterwards. Please let us know if you’d like to come so we have an idea of numbers. We hope to see you then.

Please no flowers, but if you’d like to make a donation we have set up a tribute fund in Elijah’s name in aid of Action Medical Research. Action Medical Research is one of the organisations that funded the Dove Study mentioned in one of our previous posts. The URL for the tribute fund is:

There will also be envelopes at the funeral if you’d rather make a donation offline.

Alternatively: We’d really like to provide every member of staff on the ward with a small tube of hand cream. Our experience of hand washing so thoroughly and so often on the ward left our hands painful and sore. This is a permanent fixture for the staff. We’d love it if anyone wanted to donate a small handbag sized tube of vaseline intensive care hand cream. (other hand creams are available.) It’d be a small token gesture that Elijah may contribute to soothing their hands. We know there are 150 nurses on NICU, goodness knows how many other staff members right through the ranks. Thank you.

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2 Responses to Formalities

  1. Yvonne and Barry says:

    You haven’t been out of our thoughts right through to-day.xx

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