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.

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15 babies die every day in the UK before, during or shortly after birth. That’s 15 too many! Whilst this has dropped slightly in recent years, we are still 3 times slower than most European countries working to reduce the number of people experiencing baby loss, and as someone that is now one of those stats, I find it unacceptable!

Being bereaved parents its utterly heartbreaking to imagine anyone having to face such a tragedy as that of not being able to bring their precious baby home. The thought of someone being told that their baby has died doesn’t bare thinking about, and yet we never imagine that we might become the 1!

As I now befriend at Sands, I see on a regular basis (outside of my experience) what 15 a day looks like – It looks like stillbirth, premature birth, infection, a weak cervix, illness, chromosome defects and in some cases – neglect!

I see the pain, the loneliness, the longing for their baby. I see the confusion, the broken lives and dreams, and the all consuming sadness and anger. I see the mother who nurtured that baby for months to be told they could never raise them. I hear of heartache, funerals and the ignorance of others. And I see a longing to be understood.

But I also see strength as they try to navigate life without their precious baby. And amidst all of this that they are trying to make sense of, I find it very sad that many still fail to realise that the death of a baby is something that will affect them for the rest of their life. It might not be as raw as those first days, weeks and months, but without a doubt, you don’t just grieve for a few months or a year or two. Losing a baby means losing a lifetime with your child. It is something that changes you immediately and thrusts you onto a path that feels so far from anything you have ever known, and yet baby loss is still very much a taboo subject (and one people talk about less and less as time passes).

It amazes me that so many babies die each day and people still find it hard to say it or accept someone in their loss. I find it so weird that we are made to feel weird for talking about our children or remembering them – just because they’re dead!

This September (the 16th to be precise) my 3rd child “Poppy” Should be turning 3. This year we should be anxiously awaiting her taking a big step and starting nursery. We should have already had 2 birthdays celebrating her in our family and we should have tonnes of pics of our little tot getting into mischief, and enjoying life with her 3 other siblings. There should be one more face in those family pics we take each month and one more around the dinner table. My 5 seater Picasso shouldn’t be enough and I should know the colour of her eyes, the size of her feet, the things she loves and the foods she hates. I should be able to hold her when she’s sad and tickle her and chase her round whilst she giggles.

Her siblings should know her as their friend and ally – not just a memory.

Poppy died 2 days before my due date, and was stillborn on my due date. Whilst half expected with a previous diagnosis of CHD and Trisomy 18, nothing prepared me for how broken I would feel and how dull life would become for a season.

I never imagined how awful it would be to be in labour knowing what was coming. How I would feel awkward to hold my baby because she wasn’t alive. How I would be so numb and how I prayed that it wasn’t true.

No one prepared me for people not helping me how I needed or friends leaving my life because they couldn’t deal with me in my grief. I never imagine how painful it would be to say goodbye and bury one of my children and then feel so alone for so long. And whilst there were amazing people along the way to support, with time passing this too became less frequent and loneliness was a far too familiar feeling.

I never imagined feeling so awkward for saying one of kids names out loud and remembering her.

At almost 3 years on I still cry, I still feel it and I still miss her every day. We often speak her name between us and reflect upon a life lost, but the difference now is that I have almost mastered the art of keeping a lid on my grief (though in some things its impossible) and know (mostly) who I can speak to about it.

I hate time for only one reason, and that is as it passes so do peoples interest and awareness of your pain and loss. At almost 3 years it is rare for people to speak of it and common for people to change the subject. Especially since her little sister was born last year, there is more reason for people to focus on what we have as opposed to what we lost.

As time passes our loss becomes something that happened a few years ago and not something we live with everyday.

But our loss is our daughter too. Our loss is a member of our family… the talking and reflection help us keep her in the present and not as a memory. Talking helps me to slowly begin to make sense of that Sunday night that doctor told me there was no heartbeat. It helps me make sense of birthing and holding my lifeless child. It helps me make sense of the day my husband lowered her tiny casket into a 2ft grave.

Talking reminds me she was here and is ours.

This June support SANDS is helping to reduce the number of babies dying each day in the UK through their #15babiesaday campaign. Why? Because 15 babies is too many and no one should have to live this nightmare! If you can help please do. They continually help me carry my grief and find joy in life (and feel a little more normal) despite being the 1 in 15!

In memory of Poppy Quinn Smith 16/09/2014 #1ofthe15. 

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Just this morning Alice got up on all fours and properly started to crawl (Hooray!). She has been doing the bum shuffles, backwards worm, rolls and some commando stuff for some time now to get where she wants to, but I must say that I am super excited to see her crawling! Great timing too as tomorrow she will be 10 months old.

Here at 10 months I finally feel that I am used to her and relaxed with her. I guess what I mean is, that I have accepted she’s here to stay and with that it’s hard to imagine life without her here. It’s at that point with a baby where they seem like they’ve just always been in the family, even though its only been a few months, and you couldn’t imagine them not being one of yours. I have for so long being worried for one thing and another (that ultimately boils down to a fear of another loss), that to no longer look at her in disbelief feels lovely. She has slotted in wonderfully, is a light in all of our lives and a great daughter and sister.

I think with all of that, it has meant that it has been the easiest and most enjoyable with Alice, from the angle of parenting after loss. I have had a few low days, but these were down to things with SANDS, and that will always take me a day or so to feel right again because of the nature of the meetings.

Last week though she accompanied me on one of the speeches I did for SANDS sharing my story, it was good (and a comfort) to be able to have her with me. It felt so natural that she was there, and it was a great opportunity to have her do something with me about her other big sister “Poppy”. It obviously was a heavy day (reliving those memories are never easy), but Alice was calm and chilled and it was a rare moment I had to reflect on what their relationship might have been or will be, and how Alice is helping keep her sisters memory and legacy alive. I wonder daily what having a toddler and baby would be like again with their personalities, and I wonder how having a sick child with CHD would have been too day to day. Hearing Alice was healthy was wonderful, and is wonderful of course, but we loved Poppy with all of her ailments too and  were ready to go down that road. I know I would have adapted and become her expert for her, and sometimes even that makes me sad…that I didn’t get a chance to care for her medically as well as all of the caring that naturally comes as a mother. I think of that a lot when I meet Drs and health professionals at these things because we go beyond the Trisomy 18 diagnosis and talk about all of the other things she had too as a result. Of course initially it was one with out the other and for 12 weeks that is what we had in our minds as life with Poppy.

All of the medical stuff and of course her passing has meant that I have been rather paranoid with Alice when she gets sick, but this last month, when she had a good bought of Chicken pox (which she handled like a trouper), it didn’t bother me. I wasn’t panicked or worried, we just got on with it and it ended up being a relief to get that one out of the way in this first year.

Developmentally she has started pulling up on the furniture and taking the odd wobbly step sideways. She throws things and laughs, babbles lots, signs milk when you sign food and bawls her eyes out when dinner is finished. She has developed way more cheekiness, cute laughs and for some reason loves to wake every morning at 6am!!! She sleeps through which is fine, but 6am is a little too early. She also growls at us if we do something she doesn’t life, pants and slaps the tray on her highchair for more food and makes the most wonderful and hilarious noises.

We have a great routine, she is a great eater, loving especially satsumas, pitta bread, tomatoes, tuna, chicken, roast dinners, pasta and well pretty much everything!!! I love to hold and cuddle her and just have a feeling she is going to be funny like Megan when she grows up. I love spending my days with my little Rainbow girl and can’t believe how fast she is growing!

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This Monday at our SANDS meeting, one of my friends and I decided it might be nice to do a craft with everyone. With the approach of mothers day this weekend, it just tends to be a more sensitive time for bereaved mothers and we find that crafts not only help us create (hello therapy), but our poor skills in that department also mean we tend to laugh together along the way as we share what’s in our hearts. We thought that tealight holders would be a nice thing to do as then we could all light them to remember our babies on mothers day.

I am sharing this with you because whilst it was something I did in my journey of loss with my fellow bereaved mothers, I also think that on a general scale it will make a lovely craft to do with kids as a gift for someone. Ethan actually asked if he could make one when he saw it yesterday morning and I then thought what a lovely activity to do with them too. The thrifty lass inside of me got to thinking a homemade tealight holder would make a nice and inexpensive gift for mums, Grandma’s, aunts or teacher’s for Mothers day or any occasion really and would be so personal. So here you go –

Homemade Tealight Holders

You will need 

*A glass or jam jar  (these were 50p from asda)

*Glass pens

*Embellishments (we used washi tape and stick on diamantes but lace and ribbons too would work)

*Tea lights (available all over, though the supermarkets have some lovely scented ones).

Then just go for it…Draw patterns, images, Lettering. Maybe add some tape or sparkles. Maybe some burlap and lace…

We all chose to do them differently with hearts and quotes drawn on some, to me with a letter P for poppy. One of the dad’s even got involved with tape and lots of sparkle for his wife. I loved how it was just personal to each of us for our baby, and I imagine when Ethan and Megs have a go they’ll be different again.

They are/were super easy and look pretty cute, so why not just go for it… Make someone a little tealight holder with a scented tealight. They will be lovely, cheap and greatly appreciated i’m sure.

Run Jump Scrap!
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