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

Nikki: Baby Loss Awareness Week


I can still remember a night shift 15 years ago where I sat on my break making the first set of baby loss awareness ribbons to sell to raise money and awareness of those who had lost a baby. I felt I was channelling my grief into every one of those pink and blue ribbons I made, that I had a purpose, a goal and that was to make people aware that I, and many others like me had lost a child and a piece of us too.

15 years later the heartache remains, it's not as raw but it stops me in my tracks at times. Some people around me have forgotten about my first born son but I never will and Baby Loss Awareness Week helps me to remind people that I was made a Mum 15 years ago, not since my rainbow child was born but before him I loved and lost. I carried my first son for 9 months, I gave birth to him and held him for a few minutes, he was mine and I was happy. My life changed after that day, I changed. You may not see it but I lost a part of me and Baby Loss Awareness Week helps me to honour my son and let people know that I am a different me.

I use this week to let myself grieve again, to go back to the sites where I found comfort and courage all those years ago, to cry and remember how I felt. I don't allow myself back there often as I find myself going back to a dark place and I need to carry on for those still with me. I visit his grave and light a candle, not to show my son because he knows about my grief and how much I love and remember him, but to show the world.

Friday, 13 October 2017

Lindsay: Baby Loss Awareness Week


Before I lost my first baby I didn't understand what real grief, real loss felt like. I could only imagine what it might feel like to lose a much longed for child.

I worried each day through my first pregnancy that something would go wrong. I was one of four friends who were pregnant at the same time, due a few weeks apart, one was even due on the same day as I. I had heard the statistic 1/4 and this played on my mind every day.

As the days ticked by I started to look forward and although the worry never left I started to get excited.

At 17+6 weeks I gave birth to my son.

Nothing could have prepared me for that experience. Nothing could have prepared me for the emotional pain that lingered far longer than any of the physical pain. The emotional pain is much duller now, but it'll never fully go away and I'm ok with that.

After we lost our son friends and family didn't know what to say, but they tried. 'Everything happens for a reason.' 'At least you got pregnant quickly.' 'You can have another.' 'At least...' 'At least...' I quickly came to understand that there is no 'at least' when it comes to the loss of a baby. The deep feelings you experience can't be fixed or summed up in a few words.

I cringe thinking about it now, but I clearly remember saying the usual cliches to one of my friends, some years before, after she suffered a miscarriage. I didn't know any better. I had no frame of reference. I knew these things happened, but it's not something that I'd had the chance to openly discuss. I had no knowledge. I was unaware of what she was going through and how she was feeling.

When I lost my son I didn't know there was a Baby Loss Awareness week. I had no clue what the pink and blue ribbon signified and had never heard of the Wave of Light.

In the weeks following my loss I joined various online support groups and my understanding of how baby loss affects people grew. It grew beyond my own experience. There were people out there who were talking about their babies, just as I longed to do with anyone who wished to listen. There were many different reasons and the stages of the losses ranged from a few weeks to neonatal deaths, but regardless of the circumstances each baby mattered. It was truly terrifying to realise all the things that could go wrong, but having access to those who understood, who were walking the same path, helped me immensely.

Through these groups I learned first about the 'Wave of Light' and then how this marked the end of Baby Loss Awareness week. If I only found out about this week after experiencing my own loss, then others could be forgiven for not knowing about it. Being open about my experience was important to me and I wanted to help raise awareness.

Over the past 4 years raising awareness has become increasingly important to me. You see, just over a year after losing my son I had an early miscarriage at 7 weeks. Eight months after that I lost my first daughter at 21+4 weeks, seven months later a second daughter at 13 weeks (we had to end my pregnancy with her due to a fatal fetal anomaly) and after a further seven months another early miscarriage at 5 weeks.

Five babies lost in less than three years. Each loss unrelated and unexpected.

It's important for me to keep the memory of my babies alive. It's important for me that my friends and family remember them. I share how I feel, I blog to express the jumble of emotions I tackle on a daily basis. I raise money in my babies' names for Baby Loss charities so others can access the much needed support I received and also to raise awareness.

This, for me, is still a work in progress. Baby loss is still a taboo subject, but when it affects so many of us, so many of our friends, family, colleagues etc. why is this still the case?

It's a subject which makes a lot of people uncomfortable. I have friends who have silently gone through miscarriages and don't feel comfortable openly talking about their own experience. I know my openness about my babies can make others feel uncomfortable, but with increased understanding this will hopefully change.

That is why having a week designated to raise Baby Loss Awareness is so vitally important. It's affects so many it's something we should all eventually feel comfortable talking about.

By talking about my babies, my experiences, my grief, I was able to keep going.

Last night I was fortunate enough to tuck my 6 month old daughter into bed. That is something I thought would only ever be a dream. Even on my better, more hopeful days, I could hardly imagine it.

Having one of my daughters with me changes nothing and everything all at the same time. It doesn't mean I will forget my other five babies, they cannot be replaced. It doesn't mean I will stop blogging about baby loss, sharing quotes and posts from Baby Loss charities. Having her here makes me even more determined to 'break the silence', to remember her big brother and sisters and to increase awareness amongst my friends and family. It is slow progress, but as always I'm hopeful.

This Baby Loss Awareness week I am blogging about my babies and encouraging my friends and family to join me in the Wave of Light at 7pm on Sunday evening. I hope they will share photos of their candles so awareness of baby loss can spread.

Thursday, 12 October 2017

Lynne: Baby Loss Awareness Week


After losing Findlay in July 2013 I felt more alone than I'd ever felt in my whole life. How could I possibly live again. At first people were understanding and happy to listen to me talk about my much loved, much wanted, forever missed, son. The son I longed to see, to hold, to cuddle, to kiss, just one more time. The son I would have taken my last breath for just to see him take his first.

I am blessed to be surrounded by supportive family and close friends who continue to remember Findlay and understand how important it is to recognise his existence and acknowledge that he is part of our family forever.

Some have been less understanding. Some have suggested I should move on, others have suggested I should distance myself from the friendships and support networks I've been so lucky to build up with other bereaved parents as they felt it was unhealthy that I kept talking about Findlay. That I was living in the past.

I don't know one single parent that would be prepared to not talk about their child, share their memories, say their name. Why should that be different for children lost during pregnancy, shortly after birth or later in life? We do not have the privilege of making endless memories with our babies, have the pleasure of celebrating their milestones or watching them grow. Death, and the grief that follows, is part of their lives, part of their parents lives. The part that leaves a void in the parents hearts forever more.

It may not be the easiest topic to talk about but to do so could mean the world to that baby's parents.  The parents who have to live every single day of their lives hiding their broken heart. Baby loss awareness week is such an important event in the calendar. It helps parents feel empowered to talk about their babies, share their experiences, be reminded they are not alone. Please if you know someone who has lost a child let them know you remember and you care. Join us in the wave of light by lighting a candle at 7pm on 15 October. A little understanding goes a long way.

Findlay

Every day I wish
That things were different
That you hadn't had such a cruel start
That you weren't so ill that you wouldn't survive

Every day I wish
I could hold you in my arms just one more time
To kiss your perfect little cheeks and lips
And to look at your little button nose for hours on end

Every day I wish
I was able to watch you grow
Have memories of all your firsts
See you smile, crawl, walk, hear you giggle, laugh and talk

Every day I wish
I could hear you call my name
That I could be there for you
To wipe your tears and hold you tight

Every day I wish
I could tuck you in at night
Read you a story
Kiss you goodnight

Every day I wish
You were here with me
Playing with your little brother
Going to nursery, watching you grow

Every day I wish
The pain would go away
The ache in my heart
The void in my life

Despite all of that

Every day I am thankful
That you are my son
My precious first born
You made me a mummy

Every day I am thankful
For all that you have taught me
For all that you continue to teach me
Thankful for you

Miss you Findlay. Love you to the moon and back forever and ever xxx

Wednesday, 11 October 2017

Stacey: Baby Loss Awareness Week


This week is Baby Loss Awareness Week. 1 in every 4 women will be directly affected by the death of a baby during their lifetime. Baby loss does not discriminate, sadly, it can happen to anyone at any time. It is time to start talking about our children because they deserve to be remembered.

Almost 5 years ago my first daughter died and baby loss wasn’t something I knew much about, I didn’t know anyone who had lost a baby, or so I thought. Turns out so many women and men have lost children, babies and pregnancies but we just don’t talk about it. After my daughter died it was like an open floodgate of friends and family telling me they knew what I was going through because they had experienced something similar. They, of course, didn’t know what I was going through as each person’s loss and grief is unique to them but sometimes it is helpful to not be alone in grief. To simply feel less isolated and to break the silence surrounding the taboo of baby loss.

That is what this week is all about, breaking the deafening silence that masks the horror of losing a child, reducing the feelings of isolation and, most importantly, celebrating our babies lives however short they were.
This week there are many local and national events but one I would invite everyone to join in on is The Wave Of Light. On Sunday 15th at 7pm wherever you are in the world you light a candle which burns for an hour creating a global wave of light lasting 24 hours. Whether you have lost a baby or are simply supporting someone you know who has this is a beautiful way to break the silence and show the world that our babies have left their mark and will not be forgotten.

Tuesday, 10 October 2017

Lynsey: Baby Loss Awareness Week


Baby Loss Awareness Week is a opportunity I feel for people to come together to share stories and stand together, united as one to help raise awareness of baby loss.

For the last few years I have taken part in a project called Capture your Grief which lasts the full month of October. I use this as a way to help raise awareness, bring support to others and it brings some healing in my grief journey as well.  Below is a piece of writing I wrote for day 4 of the project.

Belonging

When I lost Lilly I felt it difficult to connect with people and it’s a very lonely feeling that you don’t really belong. Part of it I think was I put on a brave face and people couldn’t see I had changed. On the outside I looked the same but on the inside I was different.

Losing a child changes you and it takes time for you and others to accept that. You’re not the person you were before. I believe for the better. Part of that is I feel that when you go through an experience of losing a child little things don’t matter, people who can’t accept you don’t matter and you naturally surround yourself with people who do matter and accept you for who you are.

This is a community nobody wants to be part of but I am so grateful to be part of this community not only on the event page but my local group Sands Lothians and world wide.

Sands Lothians was my lifeline, finally I could connect.

Connect with new people you share precious memories with and even grieve with them.

I am so grateful to the people I have met and still meet on this journey. So many inspirational people who are always there and understand.

You form friendships and share a special bond that will last a lifetime.

It’s through our loss that binds us.


Tuesday, 22 August 2017

Gemma: Right Where I Am 2017: 6 years 1 month 1 day


I’m still here 6 years, one month and one day on. I’m still here and there are good days and bad; If I weigh them up I’d say that overall the good days have outweighed the bad over the last 6 years. Mostly I’m busy with work and Daddy and your brother and sister and I don’t have the time to sit and fall apart. There are so many happy days that your brother and sister bring me; Ede reduced me to tears of laughter the other morning, she’s so determined and full of life.

Right now though I’m struggling baby boy. I have a friend now who has a son called Isaac. I love hearing your name but this is someone else’s child called Isaac; I know it’s silly as it’s such a beautiful name and her boy is grown up now but you didn’t get chance to grow up and that makes me sad. I don’t want her to ever feel like she has to avoid mentioning her son or avoid saying his name because that wouldn’t be right or fair and when she does say his name, your name, it does make me think of you and I’m never sorry to think of you. Perhaps a time will come when it will be a blessing; certainly if I had called you a more common name I’d have had to get used to hearing other children called your name by now but it’s a special name like you were.

I’m watching your little siblings grow and its shown me how much I have missed. Ede and Fletcher are so so different that its highlighted that I don’t know you. When I think about what you would look like I see an older Fletcher and that’s not right because your mouth was more like Ede’s or hers is more like yours ; I don’t know whether you would look at me with big sad eyes like Fletcher does when I tell him off and demand a snuggle or whether you’d wrinkle your nose and  pull a big cheeky smile out of the bag like Ede does. The not knowing, the never having heard you laugh or cry, weighs on my mind.

I often feel overwhelmed, and I don’t attend events that I should because I’m not sure how well my game face will hold up, my careful distance that allows me to speak openly about you being gone without opening that box but I know that this low point will start to peak again and I’ll do better about being around people once again. I have forever to practice this.

Regardless of this, we still keep you with us knowing you are never more than a whisper in the wind away from us. I talk to Fletcher and Ede about you and I know your Daddy does too. We find joy in the feathers you send us and the memory of you. I try and explain to Fletcher when he asks where you are and why you left; how you are a big brother even though we only have baby pictures of you and I hope one day they’ll tell people about their brother and that maybe you will help someone else through the worst of times.

You will always be with me, I’ll always speak of you and wonder who you would be because, otherwise, forever is an awfully long time.

~~~~~


You can read Gemma's previous blog posts here:

Thursday, 17 August 2017

Clara: Right Where I Am 2017: 6 years 4 months 3 days followed by 5 years 3 months 13 days


It's been nearly 7 years since our 'life after loss' journey began. 6 pregnancies: 3 miscarriages, 2 stillbirths, 1 amazing sister who offered to be our gestational surrogate and 1 miracle now safely here with us.

It's mixed emotions this year. Our little miracle is starting 'big' nursery on Monday - she looks so beautiful and grown up in her little uniform. It makes me wonder what her sisters would have been like starting school and starting nursery. Grace should be starting school today and Molly should be going into Primary 2. I can't believe that amount of time has passed us by.

Cara brings such joy and happiness to our lives. She really is turning into a feisty, amazing, funny little person. She brings us smiles every day. It's hard not to wonder if her sisters would have been just like her or completely different. We'll never know - they only grow up in my mind and I can only imagine what they would be like now.

It's a different grief now and it still changes. It's those days when the loss hits you in the face again out of nowhere, echoing back to that raw grief - those days are tough. It's the days when a rainbow appears or a butterfly or a white feather - some little sign that has us smiling to the sky. It's the writing of their names in the sand when we go on holiday, our way of having them with us. It's the loss of what might have been. It's the guilt that Cara will most likely never have a living sibling.

In fact, this is what I have struggled with most in recent months. No living siblings for Cara. Sometimes people ask 'is she an only child?' and depending on who is asking or what the situation is, my answer changes. Sometimes it's a simple yes. This is met with various reactions, worst one being 'you should have more, it's not fair on her being an only one.' Sometimes it's a hesitant yes but then a quick follow up that we had two little girls before her who died. That saves the follow up about having more and lets people know just how special she is.

Ultimately, Cara is enough. She is more than enough. More than I ever dreamed would be possible.

It won't stop my mind from sometimes seeing 3 little girls together... what might have been...





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You can read my previous Right Where I Am posts by clicking on the links below:


You can read more about my condition and my story here:

Sunday, 13 August 2017

Nicole: Right Where I Am 2017: Nearly 6 Years

Nearly 6 years.  I can barely believe it.  And so I start the countdown again.  Today, the last day I felt well.  Tomorrow, the last day I felt you move.  The day after; the trip to the hospital, the false reassurance.  Thinking I was in labour, being told you’d died.  The day after that; your birth.  The silence.  Then the rest of my life; a life lived without you.

Some people probably feel it’s unhelpful to think like this – to remember all the details of what happened.  And god, does it hurt to remember.  But it’s the one time of year I allow all the memories to flood in.  And, other than a few moments from the pregnancy, it’s all I have.  All that pain, and my love for you.

Barney’s started to ask a lot of questions about you.  I try to answer as honestly as I can.  Yes, you died in my tummy.  Yes, we miss you.  Yes, we will never see you again, but we can talk about you, remember you, and look at the one scan picture we have of you.  Some of it throws me.  We can be driving along, or in the supermarket, or washing up, and he’ll suddenly ask me the one question I can’t answer; ‘Why did Xander die?’  I have no response that can truly satisfy him, because I have no answer that satisfies me.  I still have absolutely no idea why a death that was so preventable, so unnecessary, happened.  Why I lost you.

Sometimes, I can comfort myself slightly by reasoning that perhaps I wouldn’t have your brothers if you hadn’t died, and obviously I wouldn’t trade them for the world.  But it doesn’t follow that I wouldn’t have them, so it doesn’t satisfy me.

I used to comfort myself by thinking I wouldn’t have set up the support group for bereaved parents if you hadn’t died.  But of course the others involved might still have set it up.  And given that I moved away from it this year, and am grieving for the lack of it in my life, this doesn’t satisfy me either.

Truth is, nothing could satisfy me when it comes to finding reason behind your death.  It all seems so bloody pointless.  If I could go back to 6 years ago – when you were still alive and safe – I would.  I’d say to that younger, more na├»ve me, ‘don’t believe that midwife. Ask for another opinion.  Don’t be fobbed off.  Don’t leave the hospital.’  I’d change the decisions I made.  I’d deliver you safely.  I’d leave the hospital with a baby instead of a box.  I’d see you, touch you, hold you in my arms, kiss you over and over.  I’d take picture after picture of you. I’d watch you play with your younger brothers. I’d make those memories and I'd see you grow up.    I’d never have to answer the question, ‘why did Xander die?’

But I can’t go back.  I can never, ever be satisfied.  So I start the countdown, and I remember everything I can about those days.  Your last movements. Your death.  Your silent birth. Anything I can about you.  It probably doesn’t help, but it’s all I have. The pain, and my love for you.  Because you are loved, Alexander Marshall Kirby, my sweet baby boy.  You are loved.  X

Tuesday, 8 August 2017

Suzanne: Right Where I Am 2017: 3 years


Dear Lucia,

Happy birthday to you, my missing one. It is hard to imagine us with a 3 year old but that is what you would be, full of spunk and spitfire like your sisters, I imagine. As I have each year so far, I'm taking today off work to be with myself and to think of you. I found a meditation garden today, which happened to be more full of tourists than I had anticipated, but it gave me a place to slow down for a beat.

There is so much life commotion this year. C is getting ready to start kindergarten. We got a new dog. G is 18 months old and busy with all the new things 18 month olds do. In past years, your birthday has had more lead up and anticipation. It had a looming about it. But this year, it almost snuck up. I was so distracted by so many other things and then one day looked at my calendar and went "oh" when I saw it coming. This sneaking up gave me more than a few moments of pause (with a splash of worry mixed in), wondering if this is where I start forgetting. If this is the beginning of you getting lost in the shuffle, of you losing your place in our family.

In my more reflective moments, I know that isn't true. You will not be an afterthought or a footnote or an asterisk attached to our family story. You are etched in all the places that matter; forgetting you is just not possible. But the intensity of the grief is slipping away and I guess it is natural for the looming element to slip away with it.

So much has changed about the grief. In the early days, I felt like I could hardly breathe most of the time. My brain was consumed by thoughts of you. I was regularly preoccupied with what ifs and they made my heart race, as if just thinking about what could have been done differently would have erased and changed something. Back then, everything hurt and everything was hard and it was like that for so long.

But as these things do, as everyone told me it would, it evolved. It transitioned into a less panicked state that was more just continual longing. Then the longing faded to a dull missing. And now - I don't know. I guess now is something in the neighborhood of moving forward. There are less sharp and griefy edges poking at me, which is nice. I don't randomly cry at work or the grocery store - also nice. Right now feels like deep acceptance lightly stained by both gratitude and sadness. Moving forward means that your birthday can sneak up because I'm not dreading or anticipating or holding my breath for it.

When tears come now, I often feel like I'm crying more for us than for you, for that other version of us that a really crappy thing happened to. Watching it back feels, I imagine, like what it must been like for our close family and friends. Heartbreaking. Powerless. I try to avoid getting too caught up in the replay of what surrounded your birth and death by reminding myself that this limited slice of your life and ours was only, as one therapist said early on, the middle. There was so much before and there has been so much after that is tremendously more beautiful and that is what I would rather remember. So when I feel like you are slipping further away, I tell myself that maybe the only thing that is slipping away is the painful part. We are tethered together, you and I. Interwoven in the ways mothers and babies are. We can wander from each other but not far.

So tonight, we ate the cake C and I baked for you this morning. We didn't have a number '3' candle and C, for some reason, didn't want 3 individual candles so we used a number '2' candle plus a single candle to make 3. We sang a happy birthday to you. We went outside and let ladybugs out in the yard, as we've done each year. Your summer birthday means it's light and warm out until bedtime so we let the girls play outside until then. G laughed excitedly watching the new dog. C chattered to the freed ladybugs and tried to coax them onto various surfaces. G did this funny thing where she took the ladybug container when C wasn't watching and ran away with it yelling "noooo!", like a preview of C chasing her and shouting no at her (which is exactly what happened). Your dad and I sat and quietly watched. To me, it felt sad and peaceful and, quite honestly, amazing too. I'm some ways, our family (you included) feels just right.

So, little love, I hope you heard us singing for you tonight. I hope you know I think of you daily. I hope you are somewhere, some wise little soul fluttering around us, sprinkling us with little gentle whispers. As always and until my last breath, I love you very fiercely.

Mom


~~~~~

You can read Suzanne’s previous post here: