The Bereavement Pathway

So here we are. We’ve landed on a path that no one wants to get on. This is the official term for where we are in the system. James started a blog to help keep people near and far in touch with Elijah’s progress. It became to us, much more than this. I think it helped us process what we were experiencing, maybe it didn’t. Maybe it distracted us and stopped us processing. It certainly did keep people in touch which where we had all got to, and it also helped James and I manipulate a wonderful community of support (near and far).

So I find myself turning back to write. Maybe I want to distract myself. I am well aware we’ve left people hanging. This page turner ended abruptly with the outcome none of us wanted. 

I feel like I shouldn’t be able to write. I feel like I should be wailing constantly. “Should” is a horrible word. As James tells me, “there are no rules.” But, I’m going to write, whether I post it is another matter, but it might help me organise my very busy head. 

We are obviously devastated. When I look in the mirror my Grandmother Annie is looking back at me, I have her eyes right now. We are certainly in shock. It is coming in waves. But we are eating at odd times of day, and we are shattered, so we are sleeping too. 

Jonah is sad, and talking about Elijah intermittently. He is sad that he can’t carry Elijah around, and that he won’t be able to teach him things. He was so excited that he got to hold Elijah, but in the same breath disappointed that he only got to do it once. He is asking lots of questions about Elijah’s body (by which it turns out he means his torso, not his arms and legs and head). He is also very pleased today as he has mended his Lego X-wing fighter which has been broken for several weeks. When he left the hospital on Thursday evening he was very concerned he’d left his lego mini-figure in the waiting room. The consultant went and found it for him. 

Amos is saying very little. Although he did tell me at bedtime last night that he misses Elijah. He does love babies, and he had been very excited about the baby coming. For the last 5 weeks, he has been saying, “I can’t believe my baby brother has come already.” I suspect he’s taking more in than we realise. He is also enthusiastically avoiding having eye-drops put in, and punching himself in the “nuggs” every time James or I cry saying “this will cheer you up.” 

They are keeping us busy, and amused. – We’ve had some great help from friends who’ve looked after them for a few hours so we can rest and immerse ourselves in this new phase. 

Cards and flowers have started arriving. Which is very thoughtful. I don’t want to be me right now. I don’t want to accept that the cards and flowers are for me. The flowers and cards  show us even more love, and in time they’ll be part of the process that helps us accept this new “normal.” 

And Elijah? I can’t quite believe he arrived. We didn’t get the preparation and anticipation, and nesting phase. We went from very sick me, to our summer baby arriving in the snow. We went full pelt into Intensive Care. Now, “Intensive Care” – there’s a phrase. Whoever thought of that name was having a good day. It’s been non-stop, full-on care. Whether for Elijah, James and I or the big boys. I can’t begin to accept he’s gone already. 

Thursday night with Elijah was beautiful. I can’t write about that. I can’t bear to look at the photos yet. We are so glad we got the opportunity to spend time alone with him, he was true to form, lively and once again defied the Dr’s expectations. Had he died immediately post surgery or even before he recovered a bit we wouldn’t have spent those precious hours with him. 

There are many things to think positively about. I now have time to tidy away the lego, and we did go to Stannage Edge on Friday afternoon which was wonderfully refreshing. But clearly the tip of the balance amounts to very little in comparison. 

The bereavement co-ordinator will contact us on Tuesday and then we’ll start the process of working out how to celebrate that beautiful little rascal. We’ll keep you informed. 

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3 Responses to The Bereavement Pathway

  1. Ruth Feather says:

    Thank you for continuing to share. I have been thinking of you constantly wondering what I could possibly do to help. Nothing I’m sure could make this any better. When you feel strong enough my friend Merry has a beautifully written blog about their experiences which might help. For what it’s worth I will continue to pray for you all xx http://www.patchofpuddles.co.uk/neonatal-loss

  2. Kathleen and Ken says:

    I am sitting alone reading the foregoing with an overwhelming feeling of grief for you and James Jonah and Amos and all your family. We have felt so privileged to be allowed to read about Elijah and although we will never ever understand how you feel we really want you to know how much we care. With all our love and prayers Kathleen and Ken xx

  3. Dear James and family… I don’t know what to say. I’m heartbroken for you. May your memories of Elijah always be bright and full of his beauty and preciousness. It seems impossible to hope for comfort or you all at this time but I hope for it anyway. Much love x

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