I am an avid reader, often reading a book in a short space of time. But I don’t often find that I am able to read a book written by a baby loss family in a day. It generally takes my heart some time to recover. The Littlest Angel by Heidi Chandler is a book that I couldn’t put down, reading it in two days.
This book is very well written, with feelings expressed honestly. In her writing Heidi does not shy away from expressing the true beauty of pregnancy, or the sheer devastation of loss. I was captivated from the start as I read about their longing for a little girl, their excitement in the pregnancy and then the shock and numbness as they receive the news that little Avery had passed away, almost reaching full term.
I often read debates about when a baby can be grieved, when a baby becomes a person. I hear parents say that well meaning people have said to them “at least you didn’t have time to get to know the baby”, as if that somehow makes it easier. There is a statement in the early chapters which for me sums up pregnancy.
“My daughter. I couldn’t help but imagine the future, of a pretty little girl playing dress-up in my heels, falling in love for the first time, her first heartbreak, choosing a prom dress, choosing a wedding dress. Would she be blonde and fair like me or dark like her father? I stared at the ultrasound pictures, trying to tell from the black and white prints. I couldn’t wait to meet her face to face.”
Even though I was well aware of what the outcome would be, I can’t help but hope for a happy ending, hope that this family get to see their daughter toddle round in high heels.
I started reading about THAT day, the day when everything changes. My stillbirth was different, I woke up to the news my baby had died. This book gives an insight into stillbirth caused by cord trauma, and placental abruption. The honest, graphic style of writing shares every aspect of that day and I can’t help but be shocked by how much additional trauma this poor family experienced. And then the part of these stories that I always love to read. For me, in this story Avery’s beauty in her parent’s eyes is clearly displayed in the writing. The love and pride are clear to see.
And the account of the days and weeks after her birth is equally honest. Heidi does not shy away from expressing the true depth of despair, the thoughts that I remember so well, wondering if the things I was doing were crazy. For me there is something very comforting about reading about the care that these parents took over their daughters ashes, and I recall taking a photograph with me everywhere in much the same way that they took her ashes.
The book does have a “happy ending”. In her honest style, Heidi talks about discovering that she was pregnant again. Her longing for another girl, and the realisation that Avery could never be replaced. She tells of the moments where her much wanted rainbow looks so much like her angel, and this – I am sure – is something many will relate to.
“Mingling with happiness there is always the grief, and there is always sadness. Even when I’m truly completely happy, there is still a small part of me that’s crying inside over the loss of my daughter. And I’ve learnt that’s ok; it means that Avery is still in my heart.”
I would recommend this book to parents looking for stories about stillbirth, placental abruption, cord trauma, rainbow babies. It is an honest story that clearly covers the whole experience, in sometimes graphic and sharp detail.
Those of you who have been around here for a while probably have not read much about Finley’s Daddy. He is incredibly private really. I am never quite sure if he understands or approves of the overspill from my brain to my fingers via the medium of a computer keyboard. So I generally avoid writing much about him. He does appear in my book After Finley – adding much humour with his comments as Dr. Baz, but other than that his trips into Finley’s online life are infrequent.
But today I wanted to write about how proud I am of him. I could write a really long list of things that we have both done to keep Finley a part of our lives, some of them have been amazing. I did a firewalk.
Baz did the Mudrunner. He has also climbed Snowdon.
The thing I was most moved by, and am most proud of is Finley’s Tune. Mark Ty Wharton - a close friend – created a tune with Baz, which was based around a recording of Finley’s heart beat. This tune is beautiful, these two tunes are beautiful. The tribute to Finley is personal to Baz – expressing his love for his son through his love of music. He played it out at Finley’s first birthday party – a dance night in Glastonbury.
You can download the tunes at Itunes uk or here if you are not in the UK
Here is what Mark has to say
The tune is available on the Delektra label which was set up by Mark Tinley, brother of Adamski, long term resident Duran Duran sound engineer and friend of the Scott family.
Barry and Tinley recorded the tune in a studio near London one night. The song is based around Finley’s heart beat taking care to place it so that if you listen carefully you can hear its presence throughout the whole song.
The heart beat never gets lost behind a beat and is present on the edge of each note as an invitation into the spirit world. A world which exists in a realm beyond human perception, on the edge of magic, in a place where you would least expect it.
Both versions feature subliminal coded messages to our angels as well as sound snippets of morse code, football stadiums and trains.
100% of the profits from record sales go to the charity set up in Finley’s memory Towards Tomorrow Together .
This tune will be featured in the film that Baz and I are taking part in called Still Born, Still Loved
Sadly this weekend Gary Barlow and Dawn his wife lost their baby, their much awaited fourth child. Here in this link the BBC report upon why stillbirth remains a mystery http://www.bbc.co.uk/news/health-19163712
I have been thinking about this today. I visited a mortuary to talk about the services that I can offer to hospitals and we began talking about post mortems. I believe that post mortems can help us to understand the cause of stillbirth in some cases. Some cases like Finley, a cause still cannot be identified. But in many cases it can be discovered to be an infection that otherwise may remain hidden.
Post mortem rates are dropping, parents are not taking up to opportunity to discover a possible reason for the tragedy. In part I believe that this is down to fear and a lack of information about what actually occurs during a post mortem. I also believe that sad and tragic news reports where organs have been seperated from the body have not helped, and the nightmares I recall having about Finley’s post mortem remain very vivid images to my own mind.
I will be writing more upon this subject in the coming weeks.
Today the world is once again forced to open it’s eyes to the suffering that many parents face every day. In fact here in the UK 11 babies will be stillborn every day – EVERY SINGLE DAY. And another 6 babies will die within a month of being born. Do you realise how many babies that is? Over 6000 babies every year in the UK alone.
Then more shocking comes the statistic that 50% of these losses are preventable. Really? Yes really. 50% of these irreplaceable babies are needlessly lost. And then another shocking statistic in the last 10 years in the UK we have not reduced this number at all. SIDS deaths have been reduced by 75% in the same time period, but stillbirth rates have not changed at all.
Baby loss is the hidden taboo. Yet today #RIPPoppy was trending world wide. Gary and Dawn Barlow have sadly had to face this reality, they are looking to the future with only memories to help ease their pain. Little Poppy joins Finley and the many other babies today. Tomorrow the world will wake up to this story in all of the newspapers and perhaps for five minutes they will understand what we parents face every single day.
Every single day we get up to a silent house, we open the curtains in a newly decorate nursery that will never hold the sound of a baby crying, we walk with our eyes shut tight past the nappy aisle in the supermarket, we see 3 am every morning, because it is less lonely than going to bed with a body that aches to cradle a baby. Will the world open their eyes and see us? Will they start to stand up and say this is unacceptable?
2nd August 2012 began as it usually does with the cuddles in bed with a squishy almost 2 year old. It doesn’t allow a lot of time for sadness. This birthday has had a different focus for me. I have felt a pressure to not pass my sadness on to Finley’s sister. You see the realisation hit me that this is our sadness not hers. She will know who her brother is, we decided that almost immediately. But how she will know him depends on us in the most part.
If you take it to it’s basic level, my basic belief, actually Finley is magical. He is somewhere beautiful. He is peace, he is freedom, he is pure love, he is able to fly. He gives magical gifts of knowledge, he shows us he is there, he makes us see the world differently. Even my hubby sees the world differently. I caught him the other night saying goodnight to a shadow. Clearly this shadow matters to him. The first Christmas without Finley I put two silver sparkly fairies dangling from the lights. I haven’t had the heart to take them down. And sometimes when the light is right the shadow appears on the blinds.
So that is the way I want Twinkle to know her brother. I want her to know her brother as magic, not sadness. The sadness is ours. There is nothing wrong with it, but there is no need for her to feel it as her own. Perhaps I am wrong in that. But anyway that’s how I felt.
So, I took Twinkle off to the childminder as usual, and went home. Baz and I slept for a bit (which is always heaven when you have a 2 year old who wakes every day without fail with the birds – the very noisy baby seagulls are her current alarm clock!). He then started cleaning, so I followed suit. Another rare occurrence in my house. It actually worked quite well as a I’m gonna avoid what this day is. Eventually though the urge to be with Finley got too much to ignore. I went to visit him. I sat chatting to him, took some of the cards that he had been sent down and laid them on his grave ready to open later.
Finley’s grandparents came up to be with us. They brought a cute little gnome, pot plant holder, and a lovely card. We went to pick up Twinkle, and had a lovely surprise. Her childminder had helped her make a picture. It had the number three on it and lots of stars. I was so relieved and happy that she had helped Twinkle do that. Twinkle was very excited by the balloons, walking round all the little baby graves with them. We let some balloons go as we usually do, and actually Twinkle made me smile I forgot to cry. She has this amazing ability to see the wonder in everything. And I captured a lovely photo of her Daddy and her watching the balloons laughing. We had to let her keep a red star though.
I had come up with a new idea this year. I’d written little gift tags for the little angels that I know of who share Finley’s birthday date, and tied them to the necks of some rubber ducks. We went to a little bridge over the river. Twinkle and Nanna really enjoyed dropping them off the bridge and watching them travel towards the sea. I wonder where they end up.
I ended the night reading Twinkle a book for the first time. It is a picture book called Someone came before you. I managed to read it without crying. She liked the pictures, and I am sure that the words will come to bring understanding to her.
Dr Joanne Cacciatore has spoken out against a proposed change to the Diagnostic and Statistical Manual V (DSM V).
Please click here to visit her in depth, professional and moving blog post.
So what is the change that has sparked this outcry across baby loss blogs world wide? The change to the bereavement exclusion. In the current manual there is a clause which excludes bereavement from being able to be classified as depression after two months. Joanne reports that in the third edition of the manual this was a more acceptable and longer time period of a year.
In the DSM V this exclusion has been reduced to two weeks. Two weeks to grieve the loss of your child before you become ill? That is not even enough time to bury your child – many funerals occur over two weeks later.
To highlight this I am going to share some extracts from the first two weeks of After Finley . Nothing in my journal is unusual. Most of the things I have written have been experienced by other parents – yet these “symptoms” could soon be enough to allow the person to be classified as depressed.You will find the “symptoms” highlighted in italics.
Barb and I looked through the photos on the camera together. We’ve taken hundreds. I cried again this time. He looks for all the world as if he will wake up at any minute.
A friend came to see me. She was lovely, and looked through our photos too. She told me how important it is to stay with your feelings. Not to block them out. She said if you block them out you’ll have to deal with them later.
The computer broke down, and I feel lost and isolated.
It is the post-mortem today. I can only hope they find out what happened to our baby boy. He is so far away in Bristol. I just want him to be here with us.
I woke in the night after a bad dream of a tall man with curly hair in a white medical jacket standing at the bottom of my bed. I say bad dream: maybe it wasn’t, it didn’t frighten me. I just felt incredibly lonely and cried.
It’s funny how much closer he seems at night. Gizmo (our ginger cat) came onto the bed for a cuddle, which helped fill the huge gap in my arms. But he’s not the right shape to fill the space my baby has left behind.
I spent a lot of the day asleep on the sofa.
I’m still not sure which tense I should be writing in. Past or present? In a way, either is right, since it feels like he’s still here with me. I guess it doesn’t matter.
Leanne, Jason and Matt visited tonight, with a big bottle of vodka. They’re close friends of ours from Plymouth and they’ve been fantastic. Leanne and I used to joke that, since I didn’t touch a drop when I was pregnant, as soon as I’d had the baby we’d down an entire bottle of vodka and leave the boys to babysit. She’s had that bottle waiting for ages. We all sat down to watch the videos of the first few hours after the birth – mostly videos of Baz bathing and dressing our baby.
It’s really hard to watch the video of the service – I look so detached from it all. Finley is in my arms, but I’m not really holding him. Baz is looking down and can hardly look at us. Jane says we are angry, scared and mixed up because what should have been a time of joy, excitement and laughter has turned into one of sadness, desolation and misery. It looks as though hearing those words makes me cry, and I start to sob again as I’m watching.
We are going to give him his name that Mummy and Daddy have chosen, so they can keep him in their hearts. It’s heartbreaking when she says this. His son died too, Jane says – so God knows something of what we’re going through. I start to cry again. It just doesn’t make sense. If God knows what we’re going through, why would he let us experience this? No one should ever have to go through this.
A sad day. Finley should have been one week old. The sun was shining and I could easily imagine walking around with him in his buggy, showing him off. It’s hard to believe a week has passed. My life has stopped. Yet time moves on. That’s harsh.
I have showered and eaten, and it feels like an achievement. Last night was the first time I’ve felt hungry. It must’ve been the vodka.
We went to collect my prescription from the hospital where we’d been for antenatal appointments. Back then, we were full of excitement to hear Finley’s heartbeat. I almost wrote your heartbeat. It feels like I’m writing this to Finley. I walked round Sainsbury’s afterwards and managed to avoid the baby clothes and toy aisles, only to get to the pharmacy and burst into tears because it’s right next to the nappies.
Jade came to visit this afternoon from Cardiff. It was hard and lots of tears were shed. It feels like we’ve been here before. Like a rerun of a dreadful TV drama.
Other people seem able to find the words. I want to start writing poems again, but I’m frightened I won’t find the right words to express how I feel. Words are not enough. But they are all I have. When will the tears stop? Why can’t we wake up, find out this is just a bad dream and that in reality we’re still waiting for our precious little baby to arrive?
Time has passed so quickly today. I’ve been busy. It’s already eleven and I don’t want to miss writing. I’ve only eaten once and then not even an entire meal. I’m not hungry. Food just doesn’t seem important. I’ve ordered a juicing book online. At least I can get some nutrition that way.
I don’t want to think about my baby being traumatised. Only of him as peaceful and sleeping. So the conversation makes me imagine all the awful things they are doing to him over in Bristol. I’ve had clinical training and know what it’s like to dissect bodies. Now my mind has linked those memories to my own baby. It’s horrific.
They tell us we can see Finley whenever we want. But I don’t think I will. I am so anxious about what he’ll look like after the post-mortem. I’m imagining all sorts. And yet I don’t know how I can express this at the funeral. So, while I do feel in a way that the funeral can be a celebration, I also know for certain that it can’t be a happy one. I can’t try and make it pleasant for others when I feel as unhappy as I do. At the very least, I hope we’ll manage to get across a feeling of peace.
Hello sweetheart. I have started writing notes to you. I have so much I want to say. You have come back to be closer to us today, yet it still seems as if you are too far away. You should be back from the post-mortem, and I am so scared that you saw it, felt it, or that they have hurt you. I feel so guilty for putting your tiny little body through it, but we need to find out why this happened to you.
I’ve eaten twice today – a definite improvement. With so little appetite this far, I’ve already shrunk back to my pre-pregnancy weight and my tummy is almost gone. The midwife commented on it the other day. But I’m feeling angry at my body. I know I should be happy. I’m sure I would be happy if only I had my baby here with me. It’s just that right now this feels like a kick in the teeth. As if Finley was never here.
It’s been a bad day. I’ve cried a lot, and when I start I can’t stop. People make me cry when they talk to me because they always seem to be crying too.
Another very hard day for me after staying up late drinking vodka with Baz. I got up to find three-quarters of the bottle gone (oops!), and a hubby with a hangover. He actually gave me a lecture about drinking too much!
Finley is now in the Chapel of Rest. I was anxious about going to see him there, but knew I needed to. I’m thankful I did. In fact, I’m keeping in mind the saying that you never regret what you have done, but what you haven’t. It’s helping me find the courage to do everything I need to do right now, however demanding. If I don’t do these things now, neither of us will have the chance again. I’m acutely aware of this fact. I needed to see Finley in his coffin today, because I need to know he’s dead. At times this week it’s been as though he’s not dead at all. And, although I sometimes feel that he was never here, mostly the sensation is one of him being present but not with me. It’s heartbreaking.
So I lay in bed, nursing my baby in my arms, making sure he was wrapped up in his blanket. Sometimes, when I moved him, his nose would bleed and I would wipe it with a wet wipe. The bleeding was a sign that Finley’s body was starting to break down, but for me it was a chance to care for my baby.
When I talk about this, I worry. I worry what people will think of a mother holding her dead baby for three days straight. I worry what they’ll think about me wiping away the blood from his nose with a baby wipe. I worry that people might think it’s wrong. Or just too tragic. Like one of those straight-to-TV movies based on a true story. But I won’t ever forget those three days. Just one thought of Mother’s Day next year and I’m weeping uncontrollably. I’ll know I should have been getting a card from my new baby when all I’ll have is an empty space in my arms where he should’ve been.
We’re being so strong, she says. I know that’s what everyone thinks, but I still don’t feel brave or strong. I feel as if I’m in pieces. Barely surviving. All I’m doing is what needs to be done, whatever I can do while we still have the time. It’s basic self-preservation. I don’t want to have any regrets.
Finley is cold, and the skin around his mouth has darkened. But his hands are perfect. They’re a more normal colour now, apart from the nails which are dark purple, very long and pointed. Without these few signs, it’d be all too easy to believe Finley is still here. All the same, I’ve been holding his hand, telling him what’s going to happen tomorrow.
So my analysis? I chose to share that two week period as prior to that supposedly I would have been ok, with no depression. A clinical assessment may only be able to look at the two period following the loss. In that two week period I had…
- lack of appetite
- heavy drinking
- irrational, delusional thoughts
- excessive crying
- problems sleeping
- weight loss
And all of those things are normal grief responses. However had I been to see my doctor I could have been diagnosed with depression, which would then place me under the umbrella of having a mental illness. Could bereaved parents actually be sectioned following the loss of their child?
There is a weird period of time in the timescale of grief. I don’t know if it arrives for everybody at the same time, but I would bet money on the fact that it appears for all. When your baby or child dies the world can become a very dark place. It can seem like you are fighting just to stay alive, there can seem to be no point to the day.
I discovered the battle of organising the funeral and volunteered for this. In the war zone that had become my life I spent hours each day searching music, readings, flowers. We had tasks to do, even if they were incredibly hard. There were missions out into enemy territory – the real world. The real world where everything seems too bright, too loud, too happy and full of traps to catch you. Booby traps like shelves of nappies in unexpected places in shops, or the screaming baby around every corner. The venture into the most dangerous place of all Mothercare, where instead of being on R&R with our family we were facing large numbers of enemy troops and booby traps trying to find an outfit for our newborn to wear in his forever bed, before we buried him.
The battle of the funeral ended in a stalemate, with no ground won or lost. And the hours after the funeral, when my mind debriefed suddenly became quiet. The shock and realisation hit me that all of the other soldiers, my comrades were going on R&R tomorrow.
A few weeks after Finley was born and my life looked like a no man’s land on a misty morning. I woke up one day and suddenly I was on my own in a barren, burnt and blackened piece of land. The mist had come down and I could not see anybody. I knew they must be there because the war is over, but to find them I had to find the courage to walk out in a world that looked different. A world with different landmarks and slightly hazy, dim views. On the other side of that patch of land life is green and bright, life has carried on for other people. I am surrounded by the letters that were left, all of them saying if you need anything just ask. But the people that left those letters are long gone.
I picked up the phone but the line is burnt and they can’t hear me, my voice was shaken and I couldn’t hear. After a while I began to venture into the wasteland, always heading back because it just seemed to far to get across that No Man’s Land of my Grief.
It’s a very lonely, scary walk to find your way across that land, when you have become accustomed to being alone and in the greyness. Sometimes a friendly hand, or word in that space of time from maybe 2-6 months is when it is most needed.
As the time goes by, I am 2 and half years After Finley, the interactions have changed. The emotion is not so raw and I get a simple kind of pleasure and pride about hearing people say how Finley has stayed in their hearts, how their lives have changed, how when they heard the news they held their child, imagining what it would be like to not lose that. If one person appreciates their life more because of Finley then his life has not been wasted. He lives on through their smiles.
People are able to remember their baby, or a baby that they know in two ways through my work. They can fundraise and dedicate a cold cot in memory of their baby to a hospital. They can also donate £30 and a butterfly box will be supplied to a hospital, with a letter in explaining who it is supplied in memory of. Specific items can also be donated to us, to be included in butterfly boxes.
I want to write,
Have nothing to say.
I want to sleep,
It’s the end of the day.
I want it to stop,
My mind ‘s started to fray.
All of this hurt
I can’t stand it this way.
I want to go back,
Wish I could replay.
I want time again,
I have so much to say.
I want to hold you,
Why couldn’t you stay.
My heart’s really heavy,
Let me heal, that’s all I pray.
Melanie Scott 2012