Sunday, 15 October 2017

Gemma: Wave of Light


For a few years now I have followed the project capture your grief where for each day of October we have a topic to discuss about our loss. I wasn't able to do it this year; I didn't feel emotionally able to cope with it. I don't know why and not doing it has bought the usual worry and guilt about moving on and people thinking I had forgotten him but of course I have not and nor will I ever. I think if I'm honest it stems from my decision that we won't try again for any more babies and that means I will never have a straightforward pregnancy and go into labour like a normal everyday wife and mother and this has been tough. I have become practiced at saying "oh god no I'm done" and accept the usual well meant offered comfort of "well you have one of each now" but it has been a carefully thought out decision based on the fact that years of utter terror has taken its toll on me and also my husband who, shut outside the operating theatre when Ede was born, watching people running for more blood could only imagine the worst.

Today, Sunday 15th October, is international wave of light where it is asked that anyone who cares to, takes a moment to light a candle in memory of a little one who didn't get to stay; for an hour at 7pm.

You may wonder, what difference will this make ? I can't explain for everyone but I can explain for myself. (Here I am again bleating on).

I have a handful of pictures, a handful of memories of my pregnancy and of Isaac after he was born and that's all I can ever hope for. I'm lucky that I can display these in my home along with my other children's pictures; I know sadly not all mummies are able to do this.

As the years pass by there are times when the whole thing seems surreal, almost that I imagined another baby and I post the same photos and the same memories because I simply don't have any more to offer to keep him here.

When you take a moment to think about him or any other baby, to say their name and light them a candle it makes them real, it gives Isaac a momentary presence in your home, a new memory of him here and now and a momentary lightening of my heart that he is still real, he still matters to someone other than Andy and I when he barely got to visit for a moment.

With two bright and challenging rainbows I can often be found yelling "socks on" repeatedly or "get off her, put her down" like a deranged prison warden so it may not appear that I know how very lucky I am. I can assure you I do know and I am thankful for all three of my babies , and no matter who you are or how early your loss; your baby mattered and with every flying leap I make to stop Fletcher and Ede falling off the wall or sofa I remember how lucky I am to be able to do it and how much I wish I'd been able to do it the first time around.

It also very much means anyone currently suffering and so often in silence knows they are not alone.

Tara: Baby Loss Awareness Week... Buddy's Story


The one thing that unites us, that every single person has in common, is that they will lose someone that they love. Yet bereavement is something we rarely talk about, with baby loss being even less talked about. It is Baby Loss Awareness Week, and by breaking the taboo and silence that surrounds baby loss by talking about my own, I hope I can provide some kind of awareness, not just about baby loss but about how debilitating grief can be and highlight what helped me. Warning this is long.

I went for a routine appointment on 4th July, where I found out my baby had no heartbeat. The next day I went in to have an induction tablet then went back on the 7th to be induced. We both went on autopilot in those limbo days between leaving the hospital and going back. I was so distraught at losing my child I didn’t even think about the birth until I went in on the 7th. The days in between were filled reading the SANDS website on what to do in the situation and feeling completely numb.

When we were thinking of names we really liked Buddy, and at the 20 week scan I referred to the baby as Buddy. We thought that was a nice name for a child or an older adult but maybe a teenager or young adult would not appreciate it. My baby will never get the chance to live through having a name they won’t like and we settled on Buddy because he will always be our little Buddy.

We went in for the appointment on the 7th at about 10am and I was given my tablets. We met our midwives, Mabel and Zara. We watched Kimmy Schmidt on our phones and ate hospital food that looked like a toilet accident. We met with the bereavement midwife who signposted us and gave us a SiMBA charity memory box. I was worried the labour would be long and of the silence in the room afterwards where a newborn should cry. By 10pm I started to contract.

I asked for pain relief and chuckled when they offered paracetamol. I had some form of opiate and then a really horrible anti-nausea injection shoved deep into my leg. I swore at that, which my husband afterwards said was quite funny. That was the most physically painful bit of the whole experience. I remember just getting comfortable when my waters broke. I started to cry because I knew that was it. I told James and we rang the buzzer and the midwives came. Zara was with me the whole time. Birth is not exactly the most relaxing experience and I couldn’t get comfortable. I stood up to walk and gravity took over.

I delivered Buddy myself with Zara next to me. There was no pain and the birth was quick. I remember when it happened I felt really proud and pleased that I was able to have given that to Buddy, and that it was something we experienced together, the two of us. It felt like the only thing I could have given him I was able to. That the first person to touch him was me. Buddy was born at 1.25am on 8th July.

As that is not what was meant to happen there was no silence in the room afterwards as midwives and doctors came running in. I remember one of them was wearing Crocs with a wheel pattern on and I mentioned that to Zara (I don’t like Crocs)! We got to spend some time with Buddy afterwards, he was placed in a cot next to the bed and my husband got to spend time with him while I slept. The next day we got to spend a bit more time with him, as did the grandparents. Buddy was tiny. He had dark hair like me. He had the most precious feet. It was the midwives that pointed his feet out. Due to Buddy only being 24 weeks old, he was very small and very fragile. I was the only person who got to hold him. That is my most treasured memory.

I asked the midwives how long their shift was. They said 12 hours. The shift they were on was to solely support four other women who had stillbirths too. 11 women a day have a stillbirth. 1 in 200 births ends stillbirth/death during or shortly after labour in the UK. A small percentage but one that equates to over 3,000 sets of parents losing their baby each year, every year. A study by the Lancet in 2011 indicated that the UK had the third highest rate of stillbirth in the Western world. 50% of stillbirths, like mine, are cause by placental failure. I went to the hospital 10 days before my scan to report reduced movement, like the 50% of women who also have a stillbirth after reporting reduced movement. If you do not feel your baby moving as much go to the hospital ASAP.

We met with the consultant who said that post mortem tests indicated the placenta was very small, and so was Buddy. He was very kind and took the time to explain things to us. He explained that even if they had spotted the issue with the placenta when I came in to say I had less movements, or at the 20 week scan, there was nothing that could have been done then because his chance of surviving would have been so small. I was told there was nothing I could have done to have prevented this. I do not smoke, had a good diet and exercised. I understand but that does not make it less painful.

If I’d have been in the same situation a week beforehand I would have been classed as a late miscarriage. I would not have had a death certificate, I would not have been able to have a funeral and I would not have been able to claim maternity leave to give me the time and income to grieve. 1 in 4 pregnancies end in miscarriage. Being silent about this does not help anyone.

Exactly a week after the birth the left side of my body went completely numb. My hand was spasming causing my nails to dig into my hand while my shoulder seized up. Paramedics were called and confirmed it was not a stroke but maybe an anxiety attack. I refer to these as the malfunction and they happened several times a day and stopped the day after the funeral.  I also had pounding migraines that were so bad they affected my speech. I could not form sentences. My concentration was affected and my memory was terrible. I felt dissociative and like I was going insane. On top of that I would have had hormones from the birth. I also felt anxious and had lost my confidence.

The GP and consultant said ‘the malfunction’ was likely caused by migraines. I had no idea grief manifested in this way until I went through it. It just felt like a repeated betrayal by my body. It took me a long time to accept that I would not malfunction again and regain trust in my body. My GP was really supportive during the period and even when I felt I was going mad she reassured me that within the remits of grief these symptoms were normal. It is the body being overwhelmed by the grief and trying to protect you from the reality of it. If you are grieving I promise you that you will not feel like this forever. It is only in the past few weeks I have started to feel more like me.

Hate is not the opposite of love - grief is. The love you had for someone does not die with them, it lasts forever. Trying to work out how to channel that love, or how to let it manifest, and just how to get through life without them, while honouring them is really complex. There is no closure because that love will never end. I won’t get over this experience, no one that loses someone they love will, but I will get through the grief, even if at points it feels like I never will. Grief comes in waves, the loss doesn’t diminish but the horrific sting of the initial shock does.

The grief I am going through is nuanced in that I am grieving someone I never met and a life I will never share with them. I found that there was a lot of resource telling me how I may feel when grieving, but not much around how to cope with grief, strategies and exercises. I found an excellent bereavement counsellor who pointed out my central nervous system was completely shot and suggested exercises to work through to help me feel more like me. My confidence has returned and the anxiety has largely gone away although anxiety about the future remains, as do new issues about my identity as a parent without a physical child.

Talking did help with the grief, both to people that are my friends, my spouse and also professionals that I could offload everything in my head to. Some online forums helped, but for me they served a purpose and I no longer use them. Most local authorities provide free counselling which can be found through google, your gp should be able to sign post you to. I feel no shame in asking for help, it was the best thing I could have done.

The most helpful website I found was a Scottish NHS one called moodjuice http://www.moodjuice.scot.nhs.uk/ they had a workbook that for me was a lifesaver in the early days http://www.moodjuice.scot.nhs.uk/pdfGuides/Bereavement.pdf the plotting of how I felt over the weeks showed to me that I was progressing even if I didn’t feel it, and the timetable helped me plan my time including weeping into a duvet time. Now, 13 weeks later I feel more like myself, I am still the same person, with the same likes and dislikes, same sense of humour. I am the same me but with something awful that happened to me.

The companion press booklets on healing grief by Alan Wolfelt helped. Setting aside a specific time to think about Buddy helped. I don’t adhere to this every day or even every week, as the tears creep up at night anyway, but doing that did help. Breathing out in an f and playing the I am noticing game of looking around a room and slowly saying in your head I am noticing the bright shade of yellow on the cushion, pausing and then noticing something else, working through each sense and looking at things in and out of the room helped me feel less anxious. The tentacles of grief are drifting off but there remains a core bereft sadness, but a functioning bereft sadness.

There are some things that can be said that will should be avoided such as anything to do with religion like it is gods will, how it was meant to be, or how they can have another child. People said these to me and made me feel even worse, no matter the good intention.

Things that made me feel better were spending time with people who would just let me be, whether that was to gossip about rubbish or cry and be cuddled, in person and via WhatsApp helped. Grief is exhausting and can make people act differently while they adjust to their new normal. Give them the acceptance and space to do this. In my case I may be blunter than my normal blunt self. Having had no energy I realise how precious my energy is, and want to focus on being happy and doing things that make me happy.

I sorted out the balcony, making it clear and looking lovely so I could make it a little garden for Buddy. We have ordered wooden names that would normally go on a child’s bedroom, but one to go on the balcony and the other to go on his grave. I hate that my new normal is buying an item for Buddy’s grave rather than his room. I started a pottery course, and have made some little fish pinch pots, which are slightly wonky and of varying degrees of quality. Buddy will have the best one on his grave and we will keep the other at home. My husband is running the London marathon for Tommy’s.

We both bought rings, my husband bought a celtic ring with mine, his and Buddy’s names in, with space for any rainbow babies, should we be lucky enough to reach that point. My ring is a star Ruby with diamonds either side. The ruby is the birthstone of July and at an angle when the light hits it looks like a star, because Buddy will always be our little star. The diamonds either side represent myself and my husband. This is our form of parenting, of fussing over our baby.

I will forever be grateful to the people who texted me and let me know they were there, who visited, took us out, cooked for us, people that told me they would ‘love to hear about Buddy’ and who wanted to hear my story, those that shared their stories, went to the shops when we couldn’t face it, bought me moisturiser when the hormones and crying made my skin dry, mentored my staff (!), watched trash tv with me, my pets for not leaving my side, friends that made me laugh and were just there when I cried and asked how my spouse was doing. Thank you.

From a work perspective those who sent cards, flowers, organised nice things for us, responded to emails I sent with ‘welcome back’, asked to meet up, sent texts asking how I was, who called me, signed off emails with thinking of you, having it made clear to me I could take as long as I needed off, smiled when I walked into the office, gave me hugs and in one case screamed (!). Thank you.

Avoiding someone is the worst thing you could do. Thankfully I have not experienced the haemorrhaging of friends that a lot of bereaved people do. While there have been one or two surprises in terms of people dropping off the face of the planet, I’m sure they had their reasons. The main surprises have been the people that I never expected to reach out that did. Someone going through babyloss, or any bereavement, wants to be treated the same as before, just with added sensitivity. The main thing I am taking from the experience is that of love.

Being pregnant with Buddy made me happy. Despite everything that happened, if I’d have known what would have happened and had the option of bypassing being pregnant with him I would not take it. I love him so much. His due date would have been on 18th October. I will be using the love that people have shown me to get through that day, and for difficult days to come.

Helen K: Baby Loss Awareness Week


“A life is a life, no matter how brief”

These words have stayed with me since the loss of my 4 babies. 2 lost early pregnancy. One lost at 20 weeks. An infant son at 15 weeks and 2 days.

I am a devoted mother to all of my babies, although now I fiercely guard their memory and their existence, instead of guarding their lives. Like a lioness protecting her cubs, I am theirs and they are mine, and nothing can alter that, not even time.

I am now 5 years, 6 months and 7 days from the last time I held my son. The day he had no choice but to leave. I live each day as best as I can, but he is still with me every single second of every single day. If I close my eyes I can still feel his skin, hear his soft breaths, and remember everything he was.

Hearing people say his name if like a piece of heaven in my heart. Seeing so many parents receive a gift from his charity is beautiful but yet conflicted, their hearts are broken too. This loss is so large and destructive, unless you are a parent of a lost child most people still have no words or can’t think of anything to say. This loss is the greatest, but yet still the least talked about. Knowing this pain and the long lasting depth of it, I am trying to be a heard voice. Our babies matter. They will always matter.

With ‘Baby Loss Awareness Week’ approaching, I am seeing more and more posts from heartbroken parents speaking their child’s name. Remembering them in the safety of a community that knows, that cares, that understand, that won’t tell us to stop. This community is the ‘Baby Loss Community’, sites and groups where parents can come together and speak loudly and openly, speak their child’s name clearly and proudly. We miss them. We will always miss them.

Minute after minute, more parents saying and showing their love for their child, so many names, so many lives, so many futures lost…

So many stars that will forever sparkle in the memories of those who knew them, however briefly.

I light candles for each of my lost babies on the 15th October each year, and I light an extra one too. I say the names aloud of all the children who should be here and present, the names all chosen with love, the names being missed for eternity, visualising the empty chair in a room where they should be seated, I shall remember them all.

Say their names loudly, and with pride.

They matter. They will always matter.

Gentle wishes and kisses to the skies,

Helen Kennan, Mummy to Haydon, Euan and 2 tiny little angels,

Saturday, 14 October 2017

Donna: Right Where I Am 2017: 2 years 7 months 3 weeks 3 days


Our beautiful Maisie you’re a big sister now. Sophie has the same hair colour as you, she’s 7 months old now and into everything. Your older brother and sister adore her, which is beautiful to see but also painful, as they would have adored you too.

Having Sophie has helped us to heal a bit but opened up so many other wounds I didn’t know were possible. The mixed emotions are never ending and the rawness has come back again of missing you.

I feel isolated once again, the dark clouds of grief are clouding me again. The why question is nearly always on my mind again.

Don’t get me wrong, I am so grateful for your baby sister, but the guilt I am finding hard to bear. When I’m woken by teething cries I wish she wouldn’t, and then the guilt sets in as you never woke me with teething you didn’t get the chance, so I should be grateful that Sophie does, and I mentally tell myself off for doing so, it’s a viscous circle.

Life is hectic most of the time but we always remember you and always will.

Our beautiful Maisie, your headstone is finally on order, I found what I could envisage and it will be perfect. Just as you are, those 55 minutes you spent with us I will treasure forever.

You are the first star we see at night.

Mummy loves you baby girl xxxxx