Breaking the Taboo
8 months and 6 days ago, my world was rocked by a status update on Facebook.
“This is the hardest thing I have ever done but I need you all to know at the same time. We lost our beloved daughter Matilda Mae last night. She was exactly 9 months old. She is in heaven, our beautiful angel. I don’t know how we go on from this but we have our wonderful Esther and William so we will find a way and appreciate your patience if you do not hear from us for a while”
I remember everything stopping for a few heartbeats; not being able to understand what I was reading; having to read it several times before the reality sunk in. Then I remember feeling sick and grabbing Potato and just cuddling him and crying.
Ghostwritermummy recently wrote this about how it has affected her. There’s not much more I can add. Suffice to say, I’m not the same person now, as I was before I read the news. I’ve cried more tears than I’ve ever cried before, but I’ve met some wonderful and kind people along the way.
I met Jennie, on our NCT course when we were both pregnant. Potato was born just 8 days after Tilda. I last saw Tilda just a few days earlier, and she’d sat in my lap in their sitting room, grinning up at me.
As part of our NCT course, we did discussed sleep safety and the risk of SIDS, but it wasn’t dwelled upon. I’ll admit now, I was more concerned with learning about how to prepare for our new arrival, breastfeed, change a nappy or deal with the physical and emotional upheaval to our lives. I naively felt that as long as I followed the advice, SIDS was not something I needed to be too concerned about. Something that affected other people.
I think that’s one of the biggest dangers of SIDS. It’s such a taboo subject that even when you’re learning how to reduce the risk, you’re not really talking about it. It’s almost as if, as a parent-to-be or new parent, you can’t focus on the concept because it’s too upsetting to contemplate.
The sad fact is that Sudden Infant Death Syndrome (SIDS) is responsible for the death of over 300 babies and toddlers in the UK each year.
In over half of all Sudden Infant Deaths, a post-mortem cannot determine a cause of death and it is put down to Sudden Infant Death Syndrome (SIDS). Researchers think there are likely to be undiscovered causes or combination of factors, but as yet, don’t know what these could be.
There are many organisations out there who work tirelessly to raise money and awareness. Organisations like The Lullaby Trust.
They raise money to fund research into the causes and prevention of SIDS; to promote safer sleeping which can help reduce the risk; to provide support services like counselling for bereaved families, friends and carers impacted by SIDS, and for families raising future babies against a background of such tragedy.
As well as raising awareness of the risks of SIDS, these charities work to break the taboo of SIDS. To make it OK to talk about it and about those who have been lost to it.
This taboo is one of the saddest things. When the unthinkable happens, when a family’s life is torn apart, those on the outside looking in, are often scared. You’re scared to say the wrong thing, or anything, or nothing. You don’t know how best to help. You don’t know how to look such pain and grief in the eye and keep going back.
In truth, I don’t think there is a right or wrong thing to say or do, just as there is no right or wrong way to grieve. You can’t possibly cast judgement based on what you would do in the same situation, because it’s not something that you can empathise with unless you’ve been there. The worst thing you can do, though, is turn away.
But not every grieving parent has Jennie’s way with words or her strength.
One of the things that surprised me most, was the number of people, friends, who berated me for sharing so much about Tilda’s death and Jennie’s subsequent work, on my Facebook page. ‘You have a lot of friends who are pregnant or who have young babies.’ I was told, ‘They don’t want to have to see that and read about it’. It made me extremely sad. Nobody wants to have to go through something as heart-breaking as the loss of a baby. The very least those of us who haven’t can do, is share their story and remember them.
Jennie has spent the last 8 months creating an amazing legacy for Tilda. In the first 6 months after Tilda died, £20,000 was raised for the Lullaby Trust, through donations, fund raising and even people jumping out of planes. People have written Tilda’s name in sand, scrabble letters, lego and glitter. We have blown her bubble kisses and held our own children closer.
But most importantly, more people than ever are talking about SIDS and supporting SIDS charities. More people than ever are willing to reach out a hand in support.
None of these things will ever put Tilda back into her mummy’s arms. But if one life is saved, or one family held together, then her legacy is infinite.
all photos courtesy of Edspire.co.uk