Capture Your Grief 2019: Support Circles

Capture Your Grief 2019: Support Circles

I have two main circles of support. The first is the one I call “the friends who get it.” They are my pregnancy and parenting after loss support group. I get to see them in Real Life. I’ve come to rely on these incredible women and I’m not sure I’d have got through my pregnancy with Hamish without them.

The other is the online group. This one is specifically for bereaved mums who are doctors. I felt so isolated after Gail died – I thought I was the only doctor (most certainly the only Paediatrician) who had ever had a baby who had died. I almost couldn’t believe it when I found these other women. It’s the most kind and caring Facebook group and we have formed a wonderful bond through our shared experience. (I have met a few of them in Real Life too).

What I love best about these groups is that there’s absolute acceptance of anyone who feels they need to be there. No judging. There’s no competition or hierarchy (as sometimes occurs in grief support groups). There’s no “well my experience was worse than your’s”, no belittling of anybody’s pain. There’s no “well your current problem has nothing to do with bereavement” and no “surely things must be all better for you now you have a new baby.”

We gently congratulate new pregnancies, babies and other positive times. We cry over further losses. There is validation of our grief and encouragement to continue to grow.

There’s a strange twist to these groups. I love these women. I consider them my true friends. Including the ones I’ve never met! I’m incredibly thankful that I’ve found them. But I think we’d all agree that we wish we didn’t have This Reason to know each other.

I love you all ladies, you know who you are xxxx

*picture credit Katie abbey design.etsy.com

Capture Your Grief 2019: Self Care

Capture Your Grief 2019: Self Care

I know, I know, I’ve written about self care before. I’ve written about how before Gail died I thought that self care bordered on being selfish. How I no longer think that. That it’s necessary.

I have started to realise just how necessary. I’ve been a little neglectful of myself lately.

When I ignore myself and my own self care for a while (including when I am trying to be Everything for Everyone), I start to get caught up in a cycle of negativity.

A classic introvert, I never speak to anyone as much as I speak to myself in my head. Some of it isn’t very nice. I’d never speak to a friend the way I speak to myself at times. This manifests as me being tired, grumpy, shouty and anxious.

When I make time for self care, I can recognise that the negativity isn’t real; they’re just thoughts.

So what does my self care toolkit look like right now?

Gratitude posts – I write down (on Facebook) one thing I’m thankful for each day (or sometimes a few days later…)

Mindfulness meditation – I hark on about this a bit, but I really find it beneficial – and I notice when I’ve not done it in a while.

Knitting – another mindful hobby, it brings me great joy to create things.

Support networks – there’s another blog on these coming up.

Time By Myself – as mentioned, I’m an introvert and really need time alone to recharge. Not easy with small children and a husband around.

Exercise and fresh air – I haven’t done a lot of running since Hamish was born, but I’ve been enjoying some yoga lately.

How are you caring for yourself today?

Capture Your Grief 2019: Daydreams

Capture Your Grief 2019: Daydreams

Do I daydream about Gail? About what she’d be like now? Not much. Because it’s too hard, too painful. I don’t usually allow myself down that rabbit hole.

But just occasionally, something will catch me unawares. When I’m with my friends from our pregnancy after loss group, when we’re altogether, I’m very aware of the children who aren’t there.

Before Hamish was born, whenever I was with friends with two children (especially two girls) I was jealous. Don’t get me wrong – I didn’t want their second child: I wanted (still want) mine.

Not long after Hamish was born, we were all walking home from school with friends – two little girls who have exactly the same age gap as my girls. I suddenly had a vision of Gail walking along next to the little one. A little black haired girl with her friend, both trying to keep up with their older sisters. I allowed myself to enjoy it, for a brief second.

For in the next moment of my daydream, the pram I was pushing disappeared.

How am I supposed to reconcile that? – that if Gail was here, Hamish – in all likelihood – wouldn’t.

It’s too much to think about most of the time. Too complex. I try to get my head around it scientifically – the chances of any of us being here in our genetic exactitude are exceptionally small anyway. And spiritually – that Gail sent us the gift of Hamish. Either way of thinking about it is reasonably comforting.

I remarked recently at dinner that Gail would have been starting school next year. “But she’s dead mum” was Freya’s both stark and baffled reply. Didn’t get to continue that daydream then!

It’s so hard to imagine what she would be like now. A bit like Freya, I guess I supposed. But Hamish has a different temperament – maybe she would be more like him?

Who knows? Does it matter? Not really. Because she’s always part of our family. Always missed. Always our second child. Always loved. That’s what matters.

Capture Your Grief 2019: Gratitude

Capture Your Grief 2019: Gratitude

I do a Gratitude post on Facebook every day. I started at the beginning of 2019, overwhelmed with gratitude at the safe birth of our “Rainbow” baby Hamish.

It’s not always easy being grateful. Life is not always full of grand gestures and exciting times. Life is full of school runs, nappy changes, tidying up… and in the humdrum of Life it can be tricky to find something to be thankful for, or, something different to be thankful for.

When times are hard, and overwhelming, it can be tricky to be grateful. In the run up to Gail’s birthday, for example, and in the immediate weeks after a friend’s second baby had died. Sometimes I think “what on earth is there to be thankful for?!”

Sometimes I feel that the posts are another slightly annoying fact of social media, showing only the good bits of life. I can see that some photos of my happy complete-yet-so-incomplete family could slam in the face of a bereaved parent.

Sometimes the posts have an underlying vulnerability. A sort-of “I really am thankful for this, but help! I’m really struggling too.” Perhaps it’s me trying to ask for help. Or perhaps it’s about me trying to reframe a difficult thought or feeling. Or both.

However, there’s a lot of evidence that practicing Gratitude is good for us. Looking for the good in things. Reframing negative thoughts. It reminds me that though every day is not good, there is good in every day. My life may not always be the Perfect Facebook life, but there are certainly many moments of Absolute Joy in my life.

Today, I am thankful for a yummy dinner out, with the friends that get it.

Capture Your Grief 2019: Heart Connection

Capture Your Grief 2019: Heart Connection

How do I stay connected to Gail? To a child who isn’t physically here? It’s hard. It’s really hard. Life fills up, surrounding the Gail-filled hole (note – not replacing the hole, and the hole doesn’t get any smaller). She’s not on my mind every moment of every day as she was for the first year or more (and I probably couldn’t function if she was).

She very much existed, but only a handful of people physically met her, and a handful more saw her tiny coffin. There are few memories to talk to people about. The memories that are there are mostly painful.

So how do I maintain a connection with a person who was only fleetingly here?

Music. When I feel a particular sort of sadness, a sadness that needs some tears to flow, I listen to music. Music that I listened to in the early days of grief.

Phoebe Katis “All of my Life.” This is from a film called “Kajaki” and was played at Gail’s funeral.

Somewhere over the rainbow. The version by Iz. It’s beautiful, and well known by bereaved parents.

I dreamed a dream. Particularly the version sung by Hayley Westenra. “There are dreams that cannot be” especially resonates.

Anything by The Piano Guys. Haunting, perfect piano music.

How else do I stay connected?

When I care for Gail’s Rose, usually chopping off dead heads. It gives me a little time to think of her. We’re not good gardeners. I really worried that the rose would die too, in some awful kind of black humored joke. But it thrives.

How else? How else?

She’s named with her siblings on a new and beautiful necklace my husband gave me. By my heart.

How else?

In acts of kindness. When I’m knitting. When I’m in contact with “the friends who get it.” In the robins we say “Thank You Gail” to. In supporting other bereaved parents. In teaching about bereavement care.

In something of a cliché, she’s not always on my mind, but she is always in my heart.

She is always with me.

Capture Your Grief 2019: Twilight of Memory

Capture Your Grief 2019: Twilight of Memory

I don’t think about the time we had together as much any more. I don’t ruminate on it, like I did in the terrible early days of grief. But when I do, I can get right back in that moment.

I have many memories to pick from, over two short days together. How do you pick a memory, a moment?

In delivery suite, being asked if I wanted to hold her, saying “Yes, of course.” Kissing her little head, as I can now kiss her living siblings.

Touching her little body, trying to imprint her into my mind forever.

Waking suddenly at 4am the morning after she was born, wanting to nurse my baby, and realising she was dead.

Bathing her, with a great friend, who found out she’d been promoted while we were bathing Gail!

Eating bacon sandwiches, drinking coffee and doing crosswords. As you do….

Crying. Endless crying. Wondering if I would ever stop crying.

The smell of her memory box.

Sitting on a bench outside, shivering in June, after we said goodbye.

Moments, precious painful memories.

Capture Your Grief 2019: Child of Mine

Capture Your Grief 2019: Child of Mine

October is Pregnancy and Infant Loss Awareness Month and as previously, I’m going to try to share bits and pieces through a project called Capture Your Grief.

My second daughter is Gail. Gail Barbara Johnston. She died, just before she was born, in June 2016. She was beautiful, like her sister. She had black black hair. Sometimes it’s hard to remember that, because I don’t have any photos of her without a hat on. But I do have a physical lock of her hair. And it really is black.

She has inspired many many acts of kindness since she was born and died. She has a new younger brother now. An amazing big sister.

She is loved beyond words.

img_3778

Happy Third Birthday

To my darling girl on your third birthday.

Happy birthday Gail, wherever you are.

Three years. Three years ago you blessed our lives. Your death redefined the trajectory of my life forever.

How has that time gone already? It seems very far away. But I can go back to that time in an instant.

I miss you. I miss you every day. We are so blessed, to have your living siblings. Your “double big sister” Freya, who will be six next week! And Hamish, nearly six months old.

You will always be missing from our family of five.

Once again I have asked friends to do Random Acts of Kindness in your memory for your birthday. I thank you for the kindness you have spread, and keep on spreading.

With all my love, forever and ever,

Mummy xxx

Nearly three years….

It is Gail’s birthday in two weeks time, on the 19th June. She should be three.

For those of you who don’t know, I did a Random Act of Kindness every day in 2017 in Gail’s memory.

As in previous years, I am asking my family and friends to do an act of kindness for someone on her birthday, and please let me know what you do.

Need some ideas? Buy a coffee for the person behind you in the queue. Take in homebakes to work. Donate your old clothes and unwanted things. Send someone a care package. Or write a letter. Pick up litter. Pay someone a compliment. Leave positive notes for people to find. Send chocolates up the tube to the labs (if you are in a hospital obviously). Practice self care.

Or anything else you care to do!

And of you feel able to, ask your recipient to Pay It Forward. And don’t forget to tell me what you do.

We are all fighting unseen battles. You’ll be surprised at how much difference you can make. Including to yourself.

Thank you x

Life after Loss and Improving Bereavement Care

About a month ago I did a talk on my experiences for a group of paediatric registrars. This is my talk.

LAL

Thank you. My name is Shona Johnston and I am a post-CCT clinical fellow in paediatric haematology/oncology.

We will discuss two things today:

1) With my mummy hat on, I am going to share my own story with you, what happened to me, and a little about Grief.

2) With my doctor hat on, discuss some aspects of bereavement care and some quotes and points of view from other bereaved parents.

Then hopefully if there is time a discussion on the barriers to really listening to patients, and how you can really listen to them.

I just want to add a trigger warning here that people may find some of my story upsetting. Its ok if you get upset, but please try to bear with me, and I am happy to chat through any issues with anyone afterwards and point you to other support if needed. I want you to learn from my story.

gail

So I told you that I’m a paediatric doctor. I am also a mummy to two little girls: Freya who is 5 years old and Gail who was stillborn at full term in June 2016. She died not long before she was born and she was perfect. There was no medical explanation for her death. She looked exactly like her sister except that she had black, black hair.

She was born here, in the women’s centre in this hospital. I went with my husband to MAU on a Saturday morning when I was 40+4 because she had stopped moving. When I was seen she had already died. After some time, we went home to with our older daughter. I went into labour that night and returned to the JR. We were initially on level 7 in the bereavement suite, then after a little delay we were moved down to labour suite when I was in active labour. Not long after I was in second stage and then had a normal delivery. I had a retained placenta so had a manual removal in theatre a few hours later.

Some hours later we went back up to level 7, where we were able to spend two very precious days with Gail. Our care was outstanding. The midwife who cared for us was my community midwife and the continuity was so important to me. Gail was in a cold cot, meaning slower deterioration in her condition. It enabled us time to cuddle her, to read stories to her, to bathe her. The bereavement suite is an en suite, and has a drop down bed my husband could have stayed in had he chosen to, and he was provided with hospital meals. We were given a beautiful memory box and a lot of Sands leaflets detailing all these strange practicalities we would need to go through. The chaplain came to talk to us, and to bless Gail. My paediatric colleague friends and my parents came and went with a blind eye turned to visiting times. We could be in a little bubble away from everything. The staff told me how beautiful she was and they encouraged me to spend time with her, and to cry. I have no regrets of our time with Gail, and the care and my memories of that time has made a significant positive effect on my grieving.

Our care was outstanding, but still improvements in bereavement care can be made – and I’ll share some specific things which could have been better in my case, and some questions for you to think about.

When I was in labour ward and wheeled through to theatre, the ODP asked what I had had. It was obvious she hadn’t known when I had to reply “a girl, but she died.” A simple error in communication which upset me so much.

The midwife continuity was excellent, but I saw a different obstetrician every day, and we had our debrief with a different consultant from the one who had done my MROP (who while I knew him and entirely trusted his opinion, he hadn’t been involved in my care before).

My discharge letter written to my GP only said “IUD” on it. To me, this was such a gross understatement of what I had been through and was continuing to go through. I made an appointment with her just to fill in the blanks.

We were given a contact number for the bereavement midwife but when I texted her some time down the line for support I got no answer. I felt very vulnerable and needed someone to advocate for me so I didn’t try again for about six months. I could have done with some proactive support from her. When I did eventually have the energy to make contact again it was harder than it should have been to make an appointment. If it was difficult for me, as someone who “knows” how the system works, how would it be for someone who doesn’t?

I am a paediatrician – a reasonably good one I like to think! – And I would not have thought about how important some of these things are – both the good and the bad things – before Gail died.

coffin

When your baby dies, you have to make a whole bunch of decisions that you had never thought in a million years you would need to think about. Practicalities that seem ridiculous in the hazy fog. Which funeral director will you use? Do you want your baby buried or cremated? Where? What kind of coffin would you like? Do you want a private or open funeral? Which music? Do you want to buy a plot of ground next to her so you can join her eventually?

In the day between finding out that Gail had died and her birth, it became apparent that we very much wanted to take Gail “home” to Orkney. We live in the South of England now, but we won’t necessarily be here forever. We both have family in Orkney and it is somewhere we will always go back to. So we took her home, and my parents drove her there.

They took the bravest and saddest journey and never left her alone. They stopped on route with my granny and at their own house.

Gail is buried on a beautiful hillside, looking out to the sea. The location couldn’t be more perfect.

hands

I’m going to tell you a little about Grief, by reading from my blog.

You can read this here: The immediate aftermath

freya

Its been a long pathway.

BUT – I want people to know that it is possible to find Joy again. That doesn’t mean that the grief goes away: sadness and joy exist right alongside each other. In fact I now truly believe that it is possible not just to survive, but to live well and be happy in this “new normal”. It’s a different kind of happy; and will always tinged with a wish that Gail was with us. And this is Freya blowing bubbles for her little sister at her grave in Orkney over the summer.

communication

Our care was outstanding, and I do not believe that anyone was to blame for Gail’s death, but still I feel that lessons can and should be learned from every baby death, and that particularly we should learn from bereaved parents about their experiences to improve the care we give. We need to listen – really listen.

I want to share some experiences from other bereaved parents, who have all given me permission to share these quotes. I asked them “what do you want paediatric professionals to know about child bereavement and life after loss?”

[I am not going to share these quotes here on my blog, but the general themes were: acknowledge the death of the child kindly and humanly – and continue to do so for many years afterwards; give parents and families choice where it is possible to do so; explain legal processes and why there has to be police presence after a sudden and unexpected death; allow time with the child after death; know that grief is not proportional to gestation or age at death; understand that pregnancy and parenting after loss are difficult and stressful; and most importantly – use the child’s name.]

lets talk about elephants

So we’re going to talk about elephants – elephants in the room, that is:

elephants

I had a recent visit to MAU (maternity assessment unit) where I saw a number of midwives and obstetricians. On my maternity notes I have a butterfly sticker (the trust’s way of recognising previous pregnancy loss) AND a Kick’s Count sticker saying “I’ve had a previous stillbirth.” Everyone I saw had clocked that I’m a paediatrician – not one of them mentioned Gail.

It left me somewhat confused – did they not know about my previous obstetric history even though its all over my notes? (highly relevant both to why I was there and why I was so worried) Or did they know and just didn’t want to mention it for fear of upsetting me? As it was it meant that I had to keep telling the professionals that I had had a previous term stillbirth. Bereaved families love talking about their children – they hate going through their story again and again with medical and nursing staff.

[I’ll just add as an aside that I was very happy with my medical care, everything was fine and I went home later that day.]

barriers

 I then invited the audience to discuss the barriers to listening to parents and talking about the death of a baby or child, particularly if they are presenting with another child sometime down the line.

Themes that came up were “I don’t know what to say”, “I don’t want to upset them”, “I don’t want to upset their children if they are in the room”, “I might not have time in a busy A&E department to discuss it.”

I then discussed that the vast majority of parents are more likely to be upset and confused if you DON’T talk about their child; nothing makes me smile more than hearing Gail’s name. What to say: something simple, heartfelt and human. Something like: “I heard from the nurse that your baby [use baby’s name] died. I’m so sorry to hear that. Do you want to talk about him/her?” or just “I’m so sorry to hear about [baby’s name’s] death.”

It doesn’t take much but can mean the world.

I spoke about Freya and how she is is very open and matter of fact about death – “My sister Gail died and she’s under the ground.” Children don’t pay attention to elephants in the room – so why should we?

I understand time pressures in a busy department – however I suggest that, just occasionally, if you take an extra two minutes to listen in the first place, it can save many more minutes further down the line.

resources

These are a few useful resources that are either useful for health professionals or leaflets that can be given to parents; in particular – the new National Bereavement Care Pathway which has just been published, an e-learning course that is aimed at GPs but open to anyone who registers with the RCGP website, Child Bereavement UK info sheets (particularly useful for siblings), the Sands support leaflets [which I was also fortunate to be able to give out at the session thanks to Oxfordshire Sands], leaflets form the Lullaby Trust, a leaflet for families of children dying from cancer, and a couple of government resources on legal and financial aspects of child death.

[There are hundred more resources out there, I just picked a few of my favourites.]

bereavement care

This is how I’d like to see bereavement care and support – like a hug around the family.

Hopefully the diagram is self explanatory but these are the elements I’d like to see; these are all part of the National Bereavement Care Pathway:

Well trained staff who are confident in dealing with child death and bereaved families.

Family input into service development.

A homely (ie non clinical) bereavement suite or area where families can spend time with their child, making memories to last a lifetime.

Family-led care, so they are able to make their own choices.

Ongoing family support after discharge from hospital.

And finally, staff support. Dealing with child death is not easy for anyone and staff need to be appropriately supported so they are able to support bereaved families.

 

final thougts

So, these are the three things I’d like you to remember:

  1. Don’t be afraid to talk about elephants.
  2. Always, always, use the baby or child’s name.
  3. This is my daughter Gail, and she was beautiful.

Thank you.

 

With a big thanks to Oxfordshire Sands for providing Family Support Packs and other information for the doctors to read.