It was a photo finish, but a finish nonetheless. Today I completed the #stepsforsands challenge to walk 310,000 steps during October and raised £715 for Sands in the process, thanks to my wonderful friends and family.
It’s hard not to reflect when you come to the end of a month long challenge. I have really taken a lot from being part of it. On the one hand, October is a really dumb month to take on a walking challenge! I got rained on too frequently for my liking. I did four days of the challenge in self isolation while awaiting a (thankfully negative) Covid test, and five days of it feeling like crap with a stinking cold. On two occasions it rained so hard that my raincoat actually soaked through! But on the other hand it is Autumn, Kaitlyn’s season, always my favourite time of year. I have had a reason every day to get my wellies on, get outside, splash through puddles, swish through leaves. Sometimes I’ve had the little kids with me, often I’ve been on my own behaving like a big kid, just because I can! It has done my head the world of good. There have been walks where I have cried, listened to Kaitlyn’s music and visited her special place. Walks where I reflected on how grateful I am for all my children, my husband, my friends and family. Walks full of audiobooks and podcasts, walks with phone calls, walks shining with beautiful blazing rainbows. I’ve taken lots from it physically as well, regaining some strength after a traumatic pregnancy and a c-section. Some theories say it takes 30 days to build a new habit; my daily walks have become so important to me that I plan to continue them as much as possible.
I found Baby Loss Awareness month and week (BLAW) very difficult this year. I ran headlong into the start of the month, feeling stronger than last year and thinking I could be part of making a real difference. Then John Legend and Chrissy Teigen lost their baby boy, Jack, and the ensuing conversation on social media was difficult to witness. Both parents have responded with such strength and eloquence to the completely unnecessary criticism they received and raised awareness amongst millions of people who will previously have known nothing of child loss. But it was hard to watch and for me, whose news feed is full of baby loss accounts, it felt overwhelming, a bit like a bombardment. Social media can be a real force for good, but it can also break your brain.
What I found hardest about the rest of BLAW was feeling completely trapped in an echo chamber. For most of the week it felt like the mainstream media paid no attention whatsoever. There was no space amongst the daily reports of Covid cases and never ending government ineptitude. Important causes and affected groups in society are all, quite rightly, looking for space for their issue – free school meals, the arts industry, the north of England, maternity in its broadest sense and the restrictions imposed. Even since starting this post this morning, a second lockdown has been announced. People’s heads are full and, as everyone keeps saying, these are indeed strange (read “pretty crap”) times we live in. I don’t for one moment begrudge these items taking up the news, they are important and Covid and associated issues affect everyone. It’s just that October is the one precious month baby loss parents have to feel like the world joins us in our reality. We live it every day, every minute, we don’t need a month for awareness and remembrance. It’s important to us because for a short window in the year we can feel heard and seen as a whole community. When that didn’t happen this year, I started to really struggle. On Wave of Light day, 15th October, the world did pay more attention and I was relieved to see this. But again less than before. Fewer candles, fewer posts. At 7pm on 15th October I noted all sorts of WhatsApp conversations and social media content that felt banal and irritating compared to the enormity of marking our children’s passing. That sounds more harsh than it’s meant to, and maybe it’s unreasonable to expect the whole world to stand still. But when your child, that you created and grew, the most precious and important aspect of your existence has died, you crave the whole world standing still and taking notice, all at once, just for that one moment, just for as long as it takes to light a candle. The photos and posts I received, though small in number, were a relief and each candle lit a small piece of my heart with such love for the people that remembered my daughter.
My way of coping with my constant frustration during BLAW was to immerse myself in local awareness raising and remembrance. The phenomenal bereavement lead at our local hospital organised an amazing virtual event. Parents from our bereavement group, Flutterbyes, went to the hospital in groups of five and recorded videos about the things they have set up in their children’s memories. Amazing charities created videos, set up by fantastic and dedicated parents. I recorded videos about Flutterbyes itself, which I was part of establishing, and the weighted memory bears scheme that I set up through the hospital. The event included a charity raffle that raised £3,500 to split between five fantastic baby loss charities, two national charities (including Sands) and three local to our area. On Wave of Light day we held a small, beautiful service led by a wonderful vicar who had himself lost a child. I sang as part of a quartet for this service and that felt a fitting way to remember Kaitlyn, as singing was such a fundamental part of my life during both my daughters’ pregnancies and after Kaitlyn’s death. Instead of taking on the world, I focussed on doing what I could in my small corner, and it helped.
For next year I hope to focus on breaking out of the echo chamber. There was more on wave of light day, and the Duchess of Cambridge visited Tommy’s, which with her profile was fantastic for raising awareness. I personally want to do more in this arena now – I’m not sure how yet, I’m no kind of expert on these things, so I’m all ears if any comms type contacts do have any good ideas! Social media is great for many things but it has its setbacks. Your feed is of course made up of self-selected content, and who is most likely to follow baby loss content? Other baby loss parents. This means we have access to each other for support in a way that never would have happened before. But on the flip side it doesn’t mean we’re always raising awareness when we want to, apart from the small percentage with something closer to “influencer” status, if that doesn’t sound to glib a label in this context. Above all else, I’m not great at social media and doubt I could ever become an influencer. So I’m going to put in more thinking and planning for next year about how we can have more of a presence in a way that raises awareness more amongst people that haven’t lived loss themselves. Any suggestions on a postcard please (probably a better way of reaching me with my crap social media skills!)
So now we enter November and a new lockdown starting right before mine and Kaitlyn’s birthdays. When the first lockdown started, all my coping mechanisms were blown out of the water. This time I’m not pregnant and I’m grateful that my baby is here safely and I don’t have that double minefield of Pregnancy After Loss and Pregnancy During Covid to navigate. This time, at-home coping mechanisms will be much harder to implement with a four-month-old to care for. We will have to find yet another new way of managing grief and trauma, and remembering our wonderful girl as we approach her second birthday.
The fundraiser is still open on Facebook until 3rd November – to donate visit https://www.facebook.com/donate/406995963601283/
A Keepsake for Kaitlyn 