Welcome to Episode 11 of Footprints on our Hearts. I’ve got a special episode for you today. I felt that I couldn’t just carry on putting out weekly interviews without really addressing the impact of the current coronavirus pandemic on those of us belong to the baby loss club.
So this is going to be a solo show, in that you’ll just have me talking, but it’s not just about me. I’ve asked others about their experiences and spent hours reading about how other bereaved parents are feeling right now and, most importantly, how they’re staying sane!
I’ve divided this episode into five segments:
- Grief, anxiety and covid-19
- What happens when you can’t visit your baby’s resting place
- Celebrating birthdays and other special occasions
- Support if you’ve recently lost a baby
- Pregnancy after loss during a pandemic
I’ve put pregnancy after loss at the end as I know some of you may want to skip this part. I’ll give you a warning before we move onto that segment so you can stop your podcast player if you don’t want to listen.
If you find this episode useful, please share it with others and I’d welcome any feedback. I’d also love to hear how your finding life and adjusting to our new normal. You can email firstname.lastname@example.org or get in touch on me on Instagram (https://www.instagram.com/footprintsonourhearts/) or Twitter (https://twitter.com/skyesfootprints).
Covid-19, grief and anxiety
Where to start? In the past few weeks, our world has been turned upside down. But for most of you listening, that will have happened before – that’s what happens when your baby dies. This difference is, this time, it’s not just your world that’s been altered for ever, it’s everyone’s.
I’m sure most of you are experienced some form of heightened anxiety. You may be worried about someone you love getting covid-19, have had your work or income affected or are anxious about the implications of the changes we’re seeing in our society. You may have had your fertility treatment cancelled, giving you a long anxious wait until you can try to conceive again. While many people will having similar anxieties, ours may be heightened because we are living proof that the worst sometimes does happen, lightning can strike twice and even if the odds of you being affected are small, you have been on the wrong side of statistics before.
It’s hard to manage these feelings at the best of times, let alone when many of your usual coping strategies may not be an option. But I feel we do have to be proactive in trying to help ourselves to think positively while accepting that these feelings are all natural and valid. This isn’t about being overly positive or putting on a brave face, it’s about finding ways to make each day a little better and brighter.
Then there’s grief. Personally, I’ve definitely felt like my grief over Skye has been worse in the past few weeks. I don’t know if this is partly just a natural dip as grief does come and go, but I think at least part of it is linked to all the talk about death and loss. For a while after Skye first died either my husband or I would wake up in the early hours of the morning – usually around 3am – overwhelmed by grief. That hasn’t happened for many months, but I was hit again by it the other week. The 4am wake up call. I know others have said they’ve felt the same – that whether their loss is recent or happened many years ago, their grief has been heightened by the pandemic.
There’s also something about being at home and having limited distractions from grief and anxiety. Not that grieving is a bad thing, but sometimes you need to step away, to think about other things and allow yourself to be happy. It’s hard to do that when your mind is a constant whirl of bad news stories, traumatic memories and that little voice in your head which repeatedly tells you all the things you should be worried about.
Even if you’re busy looking after other children or cleaning the house for the third time this week, your mind can still wander, getting stuck on those negative thought loops. This is definitely something I struggle with and have been looking at ways to manage. I’ll link to a couple of resources I’ve had recommended to me in the show notes. I also find guided meditation helpful. I’m not very practiced at meditating and I don’t really have the patience to do it enough, but I’ve found just taking ten minutes out of my day and focusing on a nice soothing voice can help calm me down.
I think one of the biggest things for me, and I’ve seen others mention this too, is wondering what it would have been like having my child with me at this weird time. And this can definitely be triggered by other parents complaining about having their kids at home and the challenges of home schooling and trying to juggle work and childcare. And while I appreciate it’s super hard for parents at the moment, sometimes it feels like just another reminder of what we’re missing out on.
Another thing that several people mention is they feel others are forgetting about them or their babies, as people are so wrapped up in their own problems. I understand why that is – a lot of my friends are currently trying to juggle home schooling their kids with work and of course, the never-ending hunt for toilet paper – but it still hurts, doesn’t it, when no one mentions your baby, asks how you’re feeling or sends you a message on Mother’s Day.
But there is a flip side to grief. As hard as it is, quite a few people talk about how grief has helped them deal with the coronavirus crisis. My guest on next week’s podcast, Hayley, talked about this when I interviewed her this week. She said…
“I used to be a control freak but now I’ve learned to let go and accept that there are some things I can’t control. It’s taught me not to worry too much about things you can’t control and be grateful for what you have now.”
There is a lot of truth in this and she’s not the only one to have said that grief has made her a stronger person. And when I was reflecting on these comments it made me realize how many parallels there are between the grief of losing a baby and how many people who haven’t experienced this kind of loss are feeling right now.
I honestly believe that losing a baby is one of the most isolating experiences you can go through. Even when you have supportive family and friends, unless they’ve experienced it themselves, they don’t really understand what it’s like. Grief is unique for everyone and it’s a journey that you have to walk alone. And while that’s incredibly hard and lonely, you learn how to deal with it, how to keep walking despite the weight on your shoulders dragging you down. You learn how to cope with the fear, anxiety, confusion and uncertainty that is your life after loss, and eventually you figure out a new normal.
And that’s actually what a lot of people have been going through over the past couple of weeks. Figuring out what the new normal is, finding new routines and coping mechanisms to get through each day and each week. Whether it’s Skyping friends rather than meeting them for lunch, logging onto a yoga class on Zoom or comfort baking – and yes, I’m definitely guilty of that last one – we’re all feeling our way through these changing times. But unlike most people, we’ve been there before in a much worse situation, and we’ve survived. We know it’ll be tough, but we also know that we’ll come through the other side.
Tips on coping with grief and anxiety during a pandemic:
- Readjust your expectations for the coming weeks, remind yourself why’re staying at home. This is not ‘life as normal’ so don’t expect yourself to be able to carry on as normal.
- Give yourself the time and space to grieve if you need it. But also look for joy and find ways to be happy, whatever your situation.
- If you’re able to, get out for some fresh air and exercise, even if it’s just in the garden.
- Restrict how much you look at the news. I’ve taken to rationing myself to checking the headlines twice a day, at lunch and in the evening.
- Join online events and connect with people. I have definitely had to get over my dislike of phone and video calls in the past few weeks. It’s good to talk to others and even better to be able to see them. Pretty much everyone has now heard of Zoom – I have heard jokes about them sponsoring the pandemic – and yoga classes, quizzes and event silent discos are being held online. Just because there’s a pandemic on doesn’t mean you can’t party.
- I’ve been trying to write down three things I’m grateful for before bed. This helps me mentally reset at the end of each day and gives me a positive thought before going to sleep.
- Lean on your virtual support community. Lots of us are struggling right now, so let’s support each other and reach out for help if we need it.
- Resources I’ve found helpful for managing anxiety:
- The Centre for Clinical Interventions in Australia has a comprehensive set of free self-help worksheets, information and resources for mental health conditions including anxiety, worry and rumination, insomnia and healthy anxiety.
- Dr. Kristin Neff has a set of free guided meditations focusing on self-compassion and working with emotions in your body on her website.
- Calm and Headspace are two popular meditation apps. They both offer trials or access to limited content for free but to unlock most of the content there is a paid subscription.
- Mindful.org has a good introduction to mindfulness and some free guided meditations including one for easing into sleep.
Graves and Special Places
One of the hardest things for many bereaved parents is not being able to visit their child’s grave or other memorial place. For many people, visiting requires a drive, which is against the current social distancing guidelines, and in addition some smaller memorial gardens are closed.
Henry’s mum was one of many who’ve mentioned this and she said the feeling was unexpected as they don’t visit him that often. I completely get this. Even if you don’t do something every week or even every month, having that option taken away from you is so different to choosing when you go to visit your baby’s burial place. We had Skye cremated, so we don’t have a grave to visit, but I’ve sometimes gone down to the cemetery when feeling sad and like I want to be close to her, and walked around the graves and memorial plaques. There have been a couple of times over the past few weeks when I’d have liked to have driven down, but can’t.
If you do have a ritual of visiting your baby every week, then this can be especially difficult. I’m going to read out a quote from Florence’s mum as I think she describes this feeling perfectly.
“We can no longer visit our daughter’s grave as the natural burial ground where she is buried has been closed. This news really upset me and made me realise how much I have come to rely on the ritual of visitng her every week. Especially since our new baby came along Sundays have still been Florence’s time and I have found the physical act of going somewhere special to her and tending her grave very comforting – it is one of the very few things we can still do for her and to have that taken away is really hard. We decided to plant a little area in our own garden for Florence so hopefully that will be an alternative way to honour her memory until we can go back to visit her at the woodland.”
I love how they’ve found an alternative way of honouring Florence’s memory while they can’t visit their grave. Creating peaceful places at home to remember your child was also the theme of this week’s #BabyLossHour. If you haven’t come across this yet, it takes place on Twitter at 8pm UK time every Tuesday evening. It’s led by Jess from The Legacy of Leo and is an opportunity to chat about different topics relating to baby loss. I’ll include a link to Jess’s profile in the show notes or you can search the hashtag BabyLossHour on Twitter to bring up the latest posts.
Several people have small areas of their garden dedicated to their babies. And if you’re worried about space in your garden, or you don’t have a garden, in many cases this is simply a single planter or tub containing herbs or flowers. We have a cherry tree for Skye, but decided to plant it in a pot rather than straight into the garden so we can take it with us if we move house.
If the thought of getting green-fingered sends your anxiety spiralling, then a better option might be to dedicate a small area in your home. I’m sure many of you light candles to remember your babies and if this is an occasional thing you do, perhaps now’s a good time to make it a bit more regular. I had a necklace made which contains some of Skye’s ashes and her birthstone which I wear when I’m missing her or want to feel closer to her.
And for those of you who are missing visiting your baby’s special place, I want to finish this segment with a beautiful quote from one of the #BabyLoss Hour participants – if I can get through this without getting teary, I’ll be doing well!
“Ultimately what it comes down to, and what I know deep in my heart, is that our babies know how much we loved them. No amount of time or space will ever break the bond. So wherever we are, there they’ll be.”
Tips if you can’t visit your child’s special place:
- Accept that you won’t be following your usual routines and rituals, and that doesn’t mean you’re forgetting about them.
- Create a place in your home or garden where you can spend time with your child. Plant some flowers, light a candle each evening or simply sit and talk about them.
Celebrating birthdays and other occasions
Another thing that’s really difficult at the moment is celebrating our baby’s birthdays. I’ve seen quite a lot of birthday cakes popping up on my Instagram feed over the past few weeks so I know a lot of parents are having to deal with this right now.
Whether you were planning to escape the country or your home for your child’s birthday or planning a party with family and friends, likelihood is that your plans have had to change. Skye’s first birthday is coming up next month, so this is a milestone I haven’t experienced yet, but I imagine it’s a time when grief comes to the surface and not being able to do what you’d planned feels even harder.
But as Sophie, my guest in Episode 7 puts it, “Different doesn’t have to mean worse”. I have to admit to being quite envious when I saw the gorgeous afternoon tea, complete with birthday cake that her and her husband had to celebrate Cecil and Wildred’s first birthday earlier this week.
It’s also Easter this weekend and while that may not be as significant as a birthday, it’s still one of those big family events you celebrate and another reminder of what we’ve lost.
Tips for dealing with special occasions while in lockdown:
- Grieve for what you can’t do, but make the best of what you can, whether it’s a picnic in the garden, a craft afternoon indoors or just curling up on the sofa and lighting a candle.
- If you know someone who has a special date coming up, let them know that you’re thinking of them and their child.
- If you can’t carry out your usual Easter traditions, why not start a new one?
Support if you’ve recently lost a baby
Losing a baby at any time is traumatic, but given everything that’s going on in the world, it must be especially hard at the moment.
If you’re listening to this and you’ve recently lost your baby, I’m sorry. I’m sorry you had to join this club that none of us wanted to be part of. I’m sorry that you may not be able to give your baby the funeral you would like to. I’m sorry that you can’t get hugs from your family and friends. I’m sorry that you can’t attend support group meetings or sit with a counsellor or even go to your baby’s grave. I’m sorry.
You may be sitting there feeling lost and lonely. You may wonder how you’re supposed to survive this pain and whether you will ever be happy again. You may wonder how everyone else is carrying on life around you when your world has stopped still.
There’s nothing that I or anyone else can say to ease this. But grief does change with time. Emma, my guest on Episode 5 describes is as like being in a really rough sea and being pulled under the waves. You’re choking and suffocating and you don’t know when you’re going to come up for breath again. And it’s horrible and scary. But over time, the sea calms and the grief is more like waves around my ankles. You know it’s there at some level, you can feel it all the time. And occasionally, a huge wave will knock you over and the wave is as big and the impact is as massive and it hurts as much as it did in the beginning, but now, you can get up quicker. And you know that there will be more time and more light and more happiness before another wave comes.
For now, you just have to keep going, one day at a time. I remember I used to make to do lists for myself – just short ones with nothing too hard on them. But many days I couldn’t even tick those few items off at the end of the day. What I didn’t realise or let myself accept for a long time was that some days, the only thing you have to do is get to the end of the day. That’s enough.
One of the hardest things for those suffering a bereavement at the moment is being isolated from support networks. When a simple hug can mean so much, having even that taken away from you is unbearable. Any number of video calls or phone calls don’t fully meet that need or human touch and contact.
Some people who have the option to go back to work have chosen to return perhaps sooner than they would have otherwise done just to get out of the house and see people. Others have found reading books on baby loss or listening to podcasts helpful – anything to feel like you’re not alone. Tasks or activities that allow you to focus on something without having to think too much can also help. Some people go on a cleaning frensy – I have to say that was not me! – or do some craft activities. Painting stones with your baby’s name on them or a special symbol you associate with them. If you have a garden, I can recommend digging as a great way to get out a bit of your anger and feel productive. If you’re still recovering from your birth, jigsaws are great way to occupy your mind without being too taxing.
While no virtual support can replace face to face human contact, there are many support networks out there, both formal and informal, and you may feel better for reaching out, whether that’s to specialist organisations or just to other people in the baby loss community. When you begin to search for us, you quickly find that there are more people in this club than you think.
What works for one person won’t work for another, so sometimes it’s about searching and learning what support works for you. If you want to connect with other people in the baby loss community, then the Sands online forum or social media are good places to start. You can search for the hashtags #babyloss or #babylosscommunity on Instagram and if you’re on Twitter, then you might like to join in the weekly #BabyLossHour on Tuesdays at 8pm.
Sands has a freephone helpline – 0808 164 3332 – which is staffed 9.30 to 5.30 Monday to Friday and Tuesday and Thursday evenings. They also have a phone app and online community, plus information on their website.
SiMBA are running weekly support groups via Zoom, including a UK-wide group and a men only support group. You can find out how to join these at https://www.simbacharity.org.uk/support/support-groups.
There are many charities who offer support to bereaved parents in different parts of the country – too many for me to list here. However, the website AtaLoss.org has a comprehensive list that you can search to find bereavement support in your area.
There are also lots of online events going on at the moment. These may be less about sharing your experiences and more about self-care and spending time with other people who understand what you’re going through. Just to give a mention to a couple of the ones I know about.
Lucy from the Rainbow Running Club and Rainbow Yoga Club is hosting a weekly mid-week mindfulness session on Wednesdays along with workshops and weekend events – you can find out details on her Instagram account @_mother_of_one or website www.rainbowrunningclub.co.uk.
@itscatandalice are hosting their second big night in tonight – they talk mainly about infertility so if you’re affected by infertility or are trying to conceive, you might be interested in following them on Instagram or checking out their website.
My top tips for those who are newly bereaved are:
- Be kind to yourself. There is nothing worse than what you’re going through now.
- Reach out for support. There are lots of charities who are still offering bereavement support and counselling and if you just need someone to talk to, the Sands helpline is open.
- Join our community. I know it feels like you’re alone in this but there are lots of us who’ve been through similar experiences. Seek us out. It may give you hope that there is still light in the world after loss and faith that you will get through this.
- Don’t be afraid to talk about your baby with other people. If you listen to my other podcast episodes, you’ll probably notice a common theme in that some friends will stick with you during this and some friends won’t want to know. Find those friends who will stick with you.
- Find little things to do during the day to distract yourself and give you something to do.
Pregnancy after loss during covid-19
So before I dive into this segment, I have a confession to make. It’s not something I was planning to share publicly so soon for many reasons, but I also feel like I need to be honest with you and talking about pregnancy after loss while ignoring my own experience feels kind of dishonest.
As you can probably guess by that, I am currently pregnant. 14 weeks when this goes so it still feels very early days and very fragile. It’s not a big secret but it’s also not something I’ve been very public about and if you’re one of my followers on Instagram, I’d really appreciate it if you didn’t mention it in any public comments, particularly not on the post relating to this podcast. I do not underestimate how lucky we’ve been to get pregnant quickly and I know many, many people are not that lucky. I want this podcast to remain a safe space for everyone and at the moment, my way of doing that is by keeping discussions of pregnancy after loss to specific segments in the podcast.
Okay, so with that out the way, let’s dive into this section.
So, pregnancy after loss. It’s a rollercoaster isn’t it? From the discussions I’ve had with my guests for this podcast, from what I’ve read about other people’s experiences and my own, there are so many conflicting emotions that it sometimes feels as if one person can’t contain them all.
And then we have this little matter of a global pandemic to throw into the equation. Having to go to scans on your own, perhaps even having to give birth on your own. Having to go to hospitals and health centres when every part of the media and possibly a good chunk of your brain is screaming at you to stay away. Having virtual appointments with midwives and consultants rather than face to face conversations. Not to mention the social isolation after giving birth, changes to postnatal care and social networks. These are just some of the anxieties all pregnant women are facing right now and worries are even more acute when you know from experience that sometimes the worst does happen.
I don’t know if this is just me, but I’m finding it really difficult to separate my anxieties and emotions around being pregnant again from some of the general grief and anxiety I talked about earlier from the more ‘everyday’ anxieties (and I don’t use that in a flippant way) relating to the pandemic and its wider impacts.
I also find that it’s not just me I’m worried about. I have a close family member and friends who are further along in their pregnancies and if I’m not worrying about my baby, I’m worrying about theirs.
For those of you who are approaching the end of your pregnancies, the feeling of being ‘so close yet so far’ must be really hard, particularly if your previous birth experience was traumatic. Worries about understaffing of maternity departments, not being listened to and not having partners present for the usual times before and after birth are really valid concerns and anxieties. A lady I spoke to on the Sands forum mentioned all of these, but has a very pragmatic way of thinking about her situation.
“My way of looking at it is, I’ve left a hospital without my child before, whatever I have to do this time to come home with my healthy son, that’s what I’ll do. Nothing else is as important as that to me. So in that way, I think the grief has prepared me a little to not worry about things that aren’t so important in the grand scheme of things.”
It feels like a lot of things are out of our control right now, and even if you’re a laid back person normally, I feel that losing a baby turns you into a bit of a control freak. That said, I do feel that perhaps in some ways I have an advantage over women who haven’t suffered a loss. For one thing, I have a lot more appointments and attention from medical staff, at least so far. It seems like before you lose a baby, they’re pretty hands off but when you had had a previous loss, suddenly everyone wants to do everything for you.
I also feel more confident in advocating for myself this time around. Skye was my first pregnancy, and like any first time mum, I didn’t know what I was doing or what I was supposed to do. Now I feel a bit better equipped to ask for support or raise any concerns.
So what can we do to look after ourselves, particularly our mental health at this time? Here are some things that I’m doing and other mum-to-be are doing to get through pandemic pregnancies:
– Focus on what is going right and be grateful for what we have. Whether that’s being able to sit out in the garden, having our partners at home more or watching our child play. We all have something to be grateful for.
– Take control of what you can. We can all eat healthy – with a few comfort treats! – get what exercise we can and do our best to rest up and sleep (baby kicks permitting). Those are things we can do to give our baby the best possible chance.
– Ride the rollercoaster. Take advantage of the ups and be kind to yourself when you’re down.
– Don’t look at the news! I spent a lot of time looking at the news a couple of weeks ago when everything was going crazy. And still, if I ever see an article about a pregnant woman with covid-19 I have to click on it. Does it make me feel better? No. But it’s one of those addictive cycles. But I do feel a lot better on the days I distance myself from the news and remind myself that for every bad news story there are a thousand good stories that never get told.
– Make what memories you can. When I was pregnant with Skye, we went away in our campervan, went to my sister’s wedding, went climbing, hiking, you name it. We had lots of photos to put in her bump book of the experiences we’d had with her. This time around, things feel pretty different. I mean, at the moment, baby chickpea’s bump book is going to consist solely of photos of chocolate brownies, muffins and other baked goods! But there are things we can do to try and bond with our babies and make what memories we can.
– Talk about your worries. To your partner, friends, midwife or a counsellor. Please don’t try to go this alone, especially if you’re struggling post-birth.
Above all, remember that while pregnancy after loss is tough, so are you. There may be darkness and fear but there is also hope and light.
You might also want to check out the Finally Pregnant podcast which talks more about pregnancy after loss or infertility. There are couple of recent episodes on there about being pregnant and giving birth during the current coronavirus pandemic.
Tips if you’re currently pregnant and struggling:
- Think about what you can do that’s in your control.
- Accept that there will be highs and lows on the rollercoaster. I don’t know about anyone else, but half the time I don’t know whether my emotions are the result of hormones, grief, general anxiety or just the person I am underneath all that – I think I’ve forgotten what she’s like.
- Talk to your midwife about your concerns. Don’t be afraid to advocate for yourself and your baby.
- Be gentle with yourself and do whatever you find helpful to ease your anxiety. Meditation, walks in the fresh air or garden, comfort baking, talking to friends – whatever helps you.
- Remember that this is a different pregnancy. Different pregnancy, different outcome.