It’s rather Ironic that this post is all about “finding the words” and yet I have had it on my “to do” list for most of the month now – because I just could not find the words!

June is SANDS awareness month – A time of year to raise awareness on Stillbirth and Neonatal death. Their campaign this year “Finding the words”, aims to break the silence around stillbirth and neonatal death by encouraging everyone to sensitively start a conversation with someone whose baby has died, however long ago.

But where do you start? What exactly do you say to someone whose baby has died? What do you say when the unimaginable has happened? And if it was a long time ago, is that not going to be awkward to bring it up now?

The truth for most will be no. In my experience on both a personal level of having my baby be stillborn and with others I have met that have had babies die, they just want to talk about them. To have their name spoken is a wonderful thing. To be asked how we are when we are working daily against grief, is extremely touching. When that person is genuine and really wants to know, that is one big sense of relief and makes you feel happy and accepted in your loss.

My biggest fear has always been that Poppy will be forgotten. Not just that but that she will become replaced or overshadowed. I have already seen in life how very different we view her life and loss to others and this has been hard to terms with, but we are always hopeful that some people in life will still acknowledge her and be interested in how I feel about it or are coping with each passing year.

Every day in the UK 15 babies die before, during, or shortly after they are born – this is the beginning of a lifetime of coping and navigating life with loss in your heart for all of these individuals and families.

Talking about the death of a baby can feel very difficult – baby death is an horrendous thing to even think about in our day, but finding the right words at the right time can really help to support bereaved parents or families when they need it the most. At times this is often following the loss, but at other times it can also be the anniversaries or just a random day or period that it has hit them again and they are not quite themselves.

No one grieving after the death of their baby should have to do so in isolation, especially when surrounded by so many. And I would say too as a word of caution, that no one grieving should have time limits placed upon them. I cannot stress enough how important this one is and how really it is no one else’s business to inflict or put on them YOUR opinions on how they should be feeling about or viewing the death of THEIR baby at any given time. One of the worst things I have experienced is being compared to those who have had miscarriage or compared to how they would behave if they hypothetically lost a baby too!

I wish in these moments I had the self awareness and confidence to say plainly “Well you know what – it wasn’t and isn’t you”! I wish I could tell people to count their lucky stars because unless you have specifically had a baby die shortly before, during or after birth you have absolutely no idea how that would make you feel or how it would affect your future. You don’t know how it changes you or how you would want to have them remembered.

Birthing a full term baby that had died crushed me and changed me! Burying our baby in her tiny grave broke us. Crushed and broken people do not need opinions or judgements. They need genuine friends and people that can give them them the space to open up and speak their babies names. They need genuine conversations to explore what they are experiencing. Conversations that say it’s okay to feel what you feel, It’s normal to miss them and its natural to want to talk about each of your kids! When we overcome the desire to judge a person in their grief or how they handle their loss, we overcome barriers and we begin to break the silence!

I get that talking about loss is hard – it’s emotionally hard for us sometimes too and hard to explain in words how we feel or even what we need. I carry a lot of anger sometimes and at other times I carry only pain and a broken heart. On rare days I have very little of either and speak of her with fondness and a little humour. I suppose it’s hard to know which face of grief you will get?

I know also that it’s hard for you who have never been through it and I often wonder if I would know what to say if I didn’t have this experience behind me to give me the words, understanding and empathy?

But hard things shouldn’t be avoided or ignored just because they are hard. And people shouldn’t not be supported because they are a little tender or frustrated about it all. It will never become easier unless we start doing it and silence will not be broken if we don’t speak the words to try to break it.

Some people need comfort, some need to vent. We do not need to understand to show understanding to someone whose baby has died – however long ago it was!

So what do you say to someone whose baby has died? Where do you start and what possibly can make it better? The truth is – not a whole lot! And this is important to remember – your job is not to make it better but to support them whilst they learn how to live with it better. Perhaps it’s taking them a meal or watching the kids after the funeral has been and gone because real life is awful to try and return to.

Maybe it’s taking them lunch and cleaning for them because you know they cannot face life since all of this happened.

Maybe it’s baking for them and writing them a card, sending flowers, or simply telling them how you acknowledge how crappy it all is and offer whatever you can to them to help cope with life after loss.

Perhaps it’s been a listening ear – Now or months, or years later.

Maybe you invite them for a walk, lunch or a warm drink and let them speak! I had a few good people do this in the early days and it was unbelievably helpful.

There is no reason though to not do or say anything.

I could a write a whole post on the things not to say, and the awful things people have said but this post is about finding the words to say as opposed to what not to say. The most important thing is you start a conversation – you say something general and open that allows the bereaved parent/sibling/grandparent to say as much or as little as they need. If you genuinely want to hear – tell them. Many have been hurt and burned by friends or people just haven’t wanted to know. And so we build barriers and walls as a result to protect ourselves and our babies. These can come down easily if you are genuine.

The first step could be “tell me about your baby” … or maybe “How have you been since losing “Baby’s name” – sit and listen to them and then ask follow up questions as you would with any other friend and follow their lead.

Another thing is to let them know you are thinking of them. If you think of them one day, remember the anniversaries or whatever, then let them know. Send a card, a text, a message, or take it up a notch and call them or invite them out.

One of the greatest things I have had in the last 12 months was a new friend that barely knew me, and certainly never knew me when Poppy died, came over the week of her anniversaires. She laid on my couch and said “I want to hear about it all – how you are and what it’s like now ect”. She stayed for hours and let me say it. I got out a lot of suppressed emotion and I got to tell someone again how utterly unfair it all felt. She didn’t care if I was cross, hurt or frustrated – I didn’t feel judged or an inconvenience, she just wanted to listen and I felt heard and supported.

Yesterday we called by the cemetery on our way home from Grandma’s. WIth it being Fathers day we try to see Poppy and now Nathan’s Dad too. Its hard but we appreciate those moments to reflect on the life and our relationships with those we have lost.

Megan leaned over Poppy’s grave and in a tone like she was speaking to one of her best friends, I heard her say “Hello Poppy – oh how you have been in my heart for such a long time!”. I don’t often cry by her grave because it makes me feel numb more than anything, but yesterday I choked! Oh how our newly turned 6 year old summed up how we all feel in a moment of childhood innocence and play beside her baby sisters grave.

Yes – We carry our babies daily in our hearts instead of our arms. And that feels like such a long time. To you it may seem like ages ago that we lost our baby, but each September and on other random dates throughout the year we remember as though it was yesterday. Most days (if not every day) I will think of Poppy in some light. You will not in anyway bring up the past or cause more grief for speaking the name of our daughter. You will instead offer the gift of supporting her mummy who struggles on. You will offer the gift of validating her life by speaking her name in this world. And you will let us know that she is not forgotten or overlooked, but remembered too.

Living with loss is our present and constant…I am a text away. A facebook message or a phone call. Your friend, sister, colleague, cousin – they are all in easy access. This month you can help by reaching out, starting a conversation, offering a listening ear and breaking the silence on baby loss. Lets hang out, lets talk, lets understand.

Follow:

A few weeks ago I received an email in my inbox from one of the channel 5 producers asking me if I would be interested in sharing our story (or rather Poppy’s story) with them for an additional News piece they wanted to do on Stillbirth! I’ll be honest, despite feelings of anxiety at the prospect of being on TV, I was mostly jumping for joy and over the moon at such a privilege. All I have ever wanted to do since giving birth to Poppy, was to raise awareness of her life, our life after loss, and the impact of Stillbirth on individuals and families.

And yet despite this, I always find that sharing our story is such a hard task and takes so much energy – it can wipe me out for a couple of days after as I deal with what I now refer to as “Grief Hangover” (Thanks Antonia!).

My desire to Raise Awareness

The easiest (or maybe most convenient) way I have found to raise awareness of what it is like to go through Stillbirth and how it feels after, is to write it here in my blog or to talk about it with people; both in person and at seminars hosted by SANDS and other loss groups! My blog has for me being the thing that has kept me afloat. To write about the things I cannot speak is incredibly cathartic to me, and whilst I know at times this has been difficult for friends to hear me say “I am okay”, and then read from me things that are far from “Okay”, it has been the only way I have been able to get out, formulate the right words, and make some kind of sense of all of the pain that continually beats upon me from losing my daughter before she was born.

I find my motherhood very difficult (and this is beyond the everyday mundane that we all struggle with) because it is two fold – on the one hand I am mothering 3 living children, but on the other I am also mother to a daughter in heaven. But this is difficult for both my mind and body to make sense of, and often in the early days my body would literally crave a baby and yet my mind couldn’t bear to be around new babies – the torture within has been incredibly hard, and motherhood such a daily battle. Nowadays the battle is more emotional and mental, but it has always been a battle to parent my living children whilst grieving and navigating the loss and who I am as a mother to Poppy.

I want to (and the key is that I can) encourage my living children to be successful in whatever path they choose and I want them to be happy. I want them to write interesting stories and leave an imprint in some small (or big) way. I want them to find people that will make them happy, and who they can hopefully have a family with too. And whilst being a parent is hard day to day, these things are so natural and in some ways the easier part of motherhood to do for them.

With Poppy however, she cannot write her story because her life never really had a chance. Her whole life went against what is natural in the order of things – her death came before her birth, and life was never lived. Her presence was known briefly by many, but quickly forgotten. Her parents buried her in infancy instead of holding her close and raising her with her siblings. And I know now that many believe I should let that all go, accept what happened when it did, and focus on my own life and happiness, but when I held her in my arms in the silence of the delivery room, I looked upon that sad situation we were in and was determined I would make something of her small life and presence in this world. She would/will always be a member of our family, spoken of in our home and remembered between us each birthday. But as a mother of a child who did not live, I cannot just let that go and I cannot just let that be what her life was.

To me her life would have been wasted, however brief it was, if something was not to be written and created in her memory.

And so I write – I write her story and I write about her tiny life. I write about how it broke us and how it has at the same time helped us to find inner strength and courage we would never have known any other way. I write about the hard stuff – the taboos, and the ongoing effects her life and departure has had on our family. And I write about our life now – how we still have joyful enriching moments, how we still see goodness and beauty, and how our joys are all so intertwined with the sadness she will never experience them with us.

And I talk – I talk about Trisomy 18, about CHD, Stillbirth and SANDS, to anyone interested. And I talk about her birth story and pregnancy at SANDS trainings. I talk about the hospice, and then I walked a ridiculous amount of miles and nearly died on a mountain side all in the name or raising awareness – awareness of our daughter and awareness of her life and how it ended, and what that now means for us.

I became a befriender, and I am becoming a therapist of some description because I want her life and the pain of her departure to have purpose – I want her imprint to be left in the hearts of others, and I want to channel my pain and grief into something meaningful. I can make breakfast, read with, play with, wash their clothes, cook dinners, talk with and go on adventures with my other kids… I can teach and discipline them, hug and kiss them, laugh and cry with them; my motherhood to them is my daily life and very apparent in how we live life together. But for Poppy it isn’t ever obvious unless I make the ongoing decisions to write, speak and find various ways to have her remembered and her life purposes created.

So raising awareness through all of these mediums, and working in a field supporting others in hardships, are my way of finding a way to let my motherhood of her show in this world.

So when a TV station email me, or when I speak on a radio station (see here), or if a newspaper or magazine were to contact me, I would always say “Yes”!

Yes to raising awareness.

Yes to helping others through our experiences.

And Yes to being able to be a mother, and helping my child’s story to be written and leave an impact on the world.

It is because of this that I was so absolutely gutted and fed up, to be stranded on a train, and I couldn’t just let it go. I was so nervous to speak on camera in the first place and all I wanted was it to be right. I wanted the message to get out of course, but I so very much wanted to be one of those speaking it as I had envisioned and had looked forward to doing.

I loved the opportunity to be acknowledged as Poppy’s mum and to share Poppy with so many people. I loved the chance to be able to speak the words so many don’t want to listen to. And I felt it an honour to stand shoulder to shoulder with 8 other brave women who too just want to mother their sweet babies.

I am grateful that 4 weeks ago I was invited to go to ITN studios and be a part of the “Stillbirth: Still a Taboo” panel. What they discussed and created was incredible and a huge step in helping families affected by stillbirth. For me It was an incredibly exciting moment in my life, and whilst it was a scary one too, ultimately it was a complete privilege to have a chance to raise awareness and exercise my motherhood for Poppy!

If you would like to see the programme then you can here 

 

Follow: