It’s been 6 years tomorrow since Elijah Died. 6 years tonight since the boys came in to hospital to hold him. This is a delicate time of year, but we are doing well.
(They still occasionally appear in the clothes they were wearing that day….those lovely long arms.)
I’ve not visited here in a year or so, and I have unpublished things hidden here from 2014 – so much has changed and so much is still recognisable. I’ve joined a grief / photo project every October for the last 5 years about how things are as we move through time. I wanted to save a bit of that project here – as a record of what it felt like in 2018. The anniversary of his death seemed like a good time to write a list….I’ve wanted to write an ideas list of ‘how to support a friend / family member when their baby dies’ for a long time. I’ve never found one that worked for me entirely on the internet – maybe that’s because you can’t just make it better with a list, and everyone is different with slightly different needs. So, I thought I’d write my own. We have been lucky to have brilliant support – so I feel it’s ok to write a few ideas down.
In order to support, first you need to decide that’s what you’re going to do. If you want to stay connected, you have to opt in. You have a choice. I think you need to be able to sit with and think about the context of what’s happened….To continue support, you simply have to know that there’s not an end point. For me there’s no mending or healing that needs to be done to take it away, just understanding that things will change over time. Lives will return to be fulfilling and the fun will return and in odd ways life will be richer – but the missing child will always be as important as any living child. No matter the gestation or whether they breathed on the outside or not. Their absence will be louder than their presence would be.
This says a bit about who is missing for me:
“How do I define Elijah’s essence? I can ponder facts: An 825g, 25 weeker, who lived his whole life in an incubator. He wrapped his fingers around my finger, he sucked his hands, he’d work hard at peeling the sticky labels from his cheeks. He rarely cried, he was never alone. He didn’t die despite having 86cm of his intestines removed 11 weeks before he was due (get a tape measure, look at what 86cm is really like.) He died when his brain tissue had been annihilated by lack of oxygen because he was so ill. I can say how strong he was, but actually all I truly know of him was he was tiny, he looked most like Jonah, he was ours, we loved him…..and that he brought with him an enormous wave of change in our lives. It’s easier to talk about Essence – like a vanilla essence….just a few drops in a cake changes the whole thing….just 37 days in my lifetime – has flavoured everything since. Nothing is the same. The way I think, the way I feel, the way I see, the way I react…all changed. These days I’m much more comfortable with all of this – it’s all familiar now. In many ways I’ve accepted it….do I like it? It’s who I am now. In early days that loss of self, that unpredictable response was an additional, hugely unsteadying factor. I find now that he’s my inner warmth, passion, motivation, vulnerability, anxiety, ache, my strength in intolerance, he turned the volume up on my honesty and maybe mostly he’s my essence.”
And this says a bit about what it feels like for him to be missing:
What does it feel like?……Separation from my child is the best way I can describe grief – I can not get to him. He can not get to me. He’s gone. It’s a tension that is held continually. Sometimes (like today especially) I pay attention to it, and sometimes it’s in the background. Gabe’s school class walked down the road past our house last week – crocodile style, hand in hand. I was upstairs, I could hear and see them coming. He was waving at the house as soon as he was in sight, he waved and looked continually, turning round to keep waving as he walked out of sight. He never saw me, he was just waving – incase. I waved the whole time – but our eyes never met. I couldn’t get at him, and he couldn’t see me. That made my chest hurt. It’s the separation from Elijah that is palpable. That is how it is. I don’t need reassurance or rescuing from that. For me, it’s far too simple an idea that there will one day be a time that he is handed to me again, or he picks me up because he’s taller than me by the time I die. That’s a human construct of what the future holds. Painful though that may be to say out loud. I think of death as a time to rest, reflecting on having had the opportunity to live at all – and to have known love, and to release that ever fluctuating tension. Maybe we’ll meet on a messy atomic level one day.
Dad read this at our wedding – it’s fitting here too. Khalil Gibran: On Children: ‘You may house their bodies but not their souls, For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.’
So with context and a bit of understanding…leads me hopefully to this useful bit….
How do you support a friend/family member whose baby has died?
You can find endless lists of what to do / what not to do on the internet. Some contradicting each other as they go.
These are a few things that I’ve seen and nodded furiously at, or found out for ourselves. I can’t say I always get this right, and certainly probably didn’t in the past. Please know that communicating directly with the Dad is just as important as with the Mum.
- Most importantly – when you hear the news, do something / say something soon. Don’t do / say nothing because you don’t know what to do or say. This may put you out of your comfort zone, but do something.
- If you care, you need to find a way to express it – life has been shaken apart and the pieces that are put back from here on in really count. Acknowledge the baby, acknowledge the pain. Say that you care.
- Send a card – having something like a card to hold is important. A reminder that at the time someone sat and wrote to you. Cards without writing on the front – just felt more comfortable. ‘With Sympathy’ cards just take some adjusting to.
- If you’re visiting, make an opportunity to mention what they’re going through – don’t outstay your welcome, but don’t leave without saying ‘we can’t imagine, how are you? We’re so sorry, this makes no sense.’ Don’t sit in the car on the way home and say ‘well, the opportunity never came up.’ MAKE the opportunity. e.g. I love that when Auntie Miia arrived she’d mentioned him before she’d taken her shoes off.
- Buy tissues and moisturiser for sore faces.
- Repeated texts over days and weeks are easy reminders that you care, but are not time invasive. Avoid too many questions in texts – responses require precious energy.
- If you visit, pop in – bring food. Leave it on the doorstep if they don’t answer. Post it if you’re far away. There are so many delivery options these days.
- Flowers are lovely but a plant is even nicer, cut flowers will die fairly swiftly but a plant that flowers at that time of year is perfect.
- Give anything that says the baby’s name: an alphabet letter – little reminders that they lived, that acknowledge you know they lived and had a name.
- If you’ve sent a card, or even phoned, mention the baby when you see them face to face.
- If you were knitting for the baby – find a way to still offer it. Mementos and reminders that people were excited and planning for your baby are really important.
- Be very cautious with faith based talk – be careful not to spin positives from your own faith if the other person does not share the same beliefs. Even if they did in the past, or still do – the death of a baby can rock a faith and unless you are certain this will cause comfort – tread very carefully. Listen.
- If the baby has older brothers/sisters check with the parents how to explain. Don’t assume it’s a taboo subject, don’t assume it’s ok to tell a confused sibling their baby is alive somewhere else. Their pain is just as important to be acknowledged.
- Offer to make a small donation to a charity in the baby’s honour/do a sponsored thing.
- If you would have remembered their birthday if they had lived, make a note to remember their birthday.
- Christmas and Parent’s Birthdays, Mother’s Day/Father’s Day – will all be more complex with a child absent. Try to be aware/acknowledge it’s hard.
- Send love on a birthday – especially that first year a ‘happy’ birthday might be out of reach.
- Try not to be cross if your friend is less sociable for a while, having people to stay can be exhausting – short visits are so much easier to manage. They are very likely busy doing the bare essentials or trying to work out who they are again.
AND……..Remember it is not necessary to say things that are positive – it is nobody’s job to ‘fix’ this. Try to get comfortable with just how it is. This isn’t going to go away swiftly. This is a life-long love.