How do you parent a dead child?

Imagine the scene…

You get in the car from the hospital and see the car seat you carefully installed. You arrive to freshly washed baby clothes in the drawers and a crib by the bed. You look down and see a rounded stomach and milk leaking through your top. You find gifts and cards welcoming your bundle of joy on the doormat. Except your baby has gone and isn’t coming back.

Everything is reminding you of what life should have been like, so how do you parent when your baby is no longer there? And what does this look like weeks, months and years down the line?

In the weeks after Etta died, I found the ‘baby loss community’ on social media to be a great comfort. It made me feel less alone by reading other people’s stories who had been through something similar and had survived. But I think it also added a pressure. I saw other mothers who were doing so much in their children’s names- from fundraising to setting up a charity. Some were taking photos of their baby’s cuddly toy in the different places they had visited, while others were sharing their story in the local media. I suppose I felt like I wasn’t doing enough to show my love for Etta, if I wasn’t publicly talking or posting about her.

On the other hand, there were mothers I saw who seemed like they were thriving after this incomprehensible loss. They were focussing on what they were grateful for and I panicked that maybe I wasn’t embracing life enough.

I still feel like I’m being pulled in two directions. Some days I think that I’m coping too well- I’ve had a whole day without tears. I’ve smiled and laughed and the day has moved easily along. It almost feels like I’m the same person I was before Etta died, although I know that can never be the case. I feel guilty that I’m coping because surely that’s a reflection on how much I love her. Shouldn’t I still be bed-bound and crippled by my grief each day? Sometimes I don’t feel sad enough.

And then there are the other days, where I am totally floored by my grief. Maybe I have no energy or interest in anything. Maybe I resent having to keep going and the others around me who are stopping me from just indulging my grief. I don’t feel grateful for what is in my life; I just feel angry for what I’ve lost. And I cry and cry and cry. On those days, I feel like maybe I’m too sad and that I’m not embracing the gift that life so clearly is.

Of course I know deep down that there is no right way to grieve. And I’ve spoken before about how comparison is the thief of grief but it’s hard not to compare. The mumxiety (mum anxiety) follows you whatever your circumstances- even if your child has died. Maybe even more so because I feel even more pressure to be the best mum I can be to Etta. I have to try even harder so my love can reach her wherever she is.

I think the biggest fear of a bereaved parent is that their child will be forgotten. This is probably even more true of baby loss parents, as the baby’s time in the world was so short and loved ones might not have had the chance to meet them while they were alive. [Side-note: So for those wondering how to help somebody who has gone through something similar- then it has to start with recognising the loss and continuing to honour and remember them for the rest of your life. Sadly, it’s often the case that in the first year or two, birthdays and important dates are remembered and then this dwindles year on year for those that have lost a child. Be the friend or family member that sends a card, message or remembers them in some other way- years or decades down the line.]

I love nothing more than when friends have sent me messages to say that something reminded them of Etta today. Sadly, we don’t have many memories of her and definitely no funny anecdotes and stories that you might swap at a family get together, so this is the next best thing. I think that’s why so many baby loss parents have special symbols/ colours/ flowers etc. for their baby because it can allow for more opportunities to think of them in your daily life, as well as giving other people something to remember them by, even if they never met them. (So I will probably appreciate sunflowers and hearts forever!)

So back to the original question- How can I be a mother to Etta? How can I be the best mum because that’s what she deserves? I’ve thought of a few ways in which I’m trying to do this- I suppose some would be the same even if she was alive.

I think of her when I see something beautiful. Seeing Autumnal changes in nature this year have made me think of Etta all the time. The new season feels like a way of showing me that it’s nearly Etta’s time of year. And although I consider her a Winter baby, the beautiful reds and oranges on the leaves of the trees always make me smile. Beautiful sunsets, stars on a clear night, sunflowers and golden leaves… I like to think she has a hand in making them just for me. And if she hasn’t, then it is simply a reminder to appreciate the beautiful things she never got a chance to see.

I want to share her name and photos whenever I get the chance. Just like any other parent, I want to talk about Etta and the little things I did get to learn about her and all the imagined things about her that I didn’t. There’s often just a slight pause when I mention Etta’s name or something about her, as if the person I’m talking to is a bit surprised and has to compose themselves before continuing the conversation. But I don’t want that to be the case- I want her to be chatted about as the part of the family that she is. There are so few memories we have of her but it’s still nice to compare her and Ezzie as babies. I remember when my friends first looked at the scrapbook of Etta, they talked about her excellent double chins! There was no likening to an angel in hushed tones but just talking about her as the very real baby she was. And that was perfect. (It’s true by the way- she was beautiful but she did definitely squish her neck back and give herself a double chin!)

I acknowledge her as my child. Sometimes. I wish I did this all the time but sometimes I don’t have the energy or the emotional capacity to deal with someone else’s reaction. Of course, if it’s someone I think I am going to have a long relationship with or see again, I tell them about Etta. I remember being asked a few weeks after Etta died if Ezzie was my eldest or if I had any more children. And I simply answered he was my eldest. Not lying but equally I didn’t have to bear my soul to a stranger. Because actually- you are protecting yourself but mainly you are protecting the other person from their feelings of awkwardness (which is silly really but you do it anyway).

The other week I picked Ezzie up from nursery and ended up walking out at the same time as another mum. He daughter went to nursery too and she had younger twins in a buggy. We made polite chit chat and we were just about to go in opposite directions when she asked if Ezzie was my only child. I didn’t know what to say- do I start a whole new awkward conversation as we are about to walk off? So I just said yes (and felt tremendously guilty). I thought that would be OK and then the next terrible question followed (that you should never ask!) “Would you like any more?”

“Well actually we had a daughter last year but she died at Christmas time and since then we’ve had 2 miscarriages.” Don’t worry- I didn’t say it. I did the classic British thing instead and said “We’ll see…” She then commented on the fact they wanted another and ended up with twins!! Oops!But I felt like I’d lied and ignored Etta’s existence and if that Mum ever finds out, she’ll feel terrible. So I’m definitely going to just say it next time. I’ve been much better lately and I’m getting used to the awkward silence and pitying look. But I’ve also been super impressed with the people who just tell me they’re sorry and get on with it.

I want to be brave and demanding for Etta. Losing Etta hasn’t made me brave- I wish it had because then the days might feel a little easier. However, she has certainly inspired me to try and embrace opportunities and not worry about the small things. I felt really anxious about starting supply teaching and having to just turn up in front of a class of children with no plans. But thinking of Etta made me feel like I could do it. What’s the worst that could happen? The worst already has happened and I survived. She’s made me want to live without regrets. And that might look like jumping out of a plane for charity one day, or it might look like starting counselling when I feel I can’t cope. I think it’s really trying to be the best version of myself I can be, whilst not putting too much pressure on myself to be the best version. Sounds easy enough…

The other thing is to be demanding. A previous headteacher in a school I worked at in London once told me. “We expect our teachers to be demanding of us because they are being demanding for the children.” And I didn’t truly understand it then, but I do now. When you have a cause that is so important to you- you can be demanding. Sam, in setting up his Sands United Salisbury football team, has had to be demanding. He asked for sponsors, he asked for coverage on the media, he organised grants and donations etc. You can be demanding because it’s not for you. And that’s how I feel about Etta now- there will be times in my life when I know that I might need to be demanding and it will all be for her and her legacy which leads on nicely to…

I want to raise awareness and raise money in her name. I think sharing my story is another way of honouring her. It helps me and I also hope that it helps raise awareness for those who are bereaved parents or have CHD. Hopefully, my words also offer some comfort to those going through something similar to let them feel they are not alone, in the same way others’ words have helped me.

Etta has a ‘star tribute fund’. This means we have a fund at Bristol Children’s Hospital, that we can pay into for the rest of our lives. It’s hard when there are so many worthy charities out there, and we have been helped by many of them but I know this will always be close to our (healthy) hearts. This hasn’t really been the year for fundraising and yet charities are now struggling more than ever. I feel the pressure to do amazing things for Etta and then I remind myself, it’s been less than a year since she died and I’ll have the rest of my life to fundraise for children like Etta. And I’m also learning that the money you raise and the influence you have, isn’t a reflection on how loved and special your child was. I have to remind myself of that. I think ‘activism’ of any sort is a worthy way of dealing with grief but at the end of the day, there is still your own precious child who died. And the quiet private grief you hold for them is just as important.

This leads me onto what we have planned for Etta’s birthday. The Better for Etta kindness campaign has been months in the making and then coronavirus took a massive SH*T on it. As if grieving Etta and 2 miscarriages wasn’t enough, we now can’t have a birthday party for Etta or go to visit where we scattered her ashes. And lots of what I had planned for Etta’s campaign now can’t happen. But… as I keep saying. Life is unfair and it doesn’t really matter! None of this stuff really matters! So the new plan…

Sam, Ezzie and I will be completing an act of kindness for every day that Etta was alive last year (28 days in total) and we would like you to join us in as many kind acts (big or small) that you would like! I’ve set up a JustGiving page, so that if you want to sponsor us or donate as your kind act you can do so. We will be doing all sorts of (socially distanced 🤦🏼‍♀️) things from a litter pick to making Christmas cards for our local care home. I would love for you to share any ideas you have for Covid-friendly kind acts as it’s been tricky to think of 28!!

https://www.justgiving.com/fundraising/betterforetta

To me this is what the ‘Better for Etta’ page was all about- celebrating her precious life and trying to make the world a better place because of her. Showing my love for Etta might be in the BIG OBVIOUS things like raising lots of money and sharing her story across the internet. But I like to think at it’s core is the small kindnesses that might skip by unnoticed by anybody except her. It’s in the smiles that she didn’t get a chance to give and the ‘thank yous’ she didn’t get to say. I hope I can make her proud by living some of the life she was meant to live.