Tuesday 28 July 2015

Julz: Right Where I Am 2015: 3 years 3 months 26 days

I have been very lost for words this year, here goes…

I sit here with Melody's new little sister, a sister who this time last year was no where near in existence.
I say little, of course she's not, not really, the baby is now 6 weeks, a week OLDER than Melody will ever be.
She's having a growth spurt, the growth spurt that could well have helped Melody's recovery.
The growth spurt that she never had the chance to have.
Another sister who will only ever recognise Melody as a headstone or a photo in a frame.
"The girl in the photo, that's my sister" is how Melody will ever be introduced.

I sit here with the thoughts that our family is complete, but not quite; my brain still struggles to know how big our family is, who I tell the truth to.
New people look at me strangely because I have to count in my head how many children I have, not answer straight away.
I lie sometimes.
I have to, because sometimes it’s the feeling of normality I crave. I don't want to be a bereaved mum every day.
To moan about sleepless nights without guilt.
"But one of your babies died."
To say out loud I'd like a break.
"But you should be grateful."
"At least you have healthy children."
I sure do, they don't replace Melody though.
Normality at times is long forgotten.

I used to love The Twilight Saga (I know!), things like Supernatural; now I can barely stomach them.
Before it was easy going things to watch, the romanticism of Twilight, an old fashioned love I guess, even though it should have been impossible. They even had a baby, a baby that was meant to be a monster,  that should never have existed, lived.
Our baby, real life baby, had 80% chance of survival, she died. Now I know it’s not real, but I used to enjoy it, now I can't see past it. I miss watching it, the fairy tale ending of eternity.
We used to watch Supernatural after our full days in NICU, we were fans before, but it was something we could take our minds off the fear of our tiny baby fighting, and fought she did.
Only now Supernatural with demon children, heaven and hell, I know it’s fiction but at the same time it’s our reality, children and babies die,  we know this far too well, the Supernatural horrors are our reality.
I don't believe in heaven.
I don't believe in hell.
I wish I did, to want to believe, that maybe Melody is out there. I am hoping come next entry I'll have found a belief or a sign, that she is safe and still around us, not cold and alone.

Where am I?
I'm building my life again, to not feel so heavy.
To not let Melody's death continue to define me…
To ignore the judgement of those who don't understand.
That if I want to talk I will.
If I want to cry to remember it’s not a bad thing, it doesn't make me weak.
To feel normal, because I am just like any other mum.

"I have five children, yes I have my hands full with four pairs of loving arms and a heart with arms I can no longer touch."

I am a bereaved mother.

I am Melody's mummy.

And I miss her.

~~~~~

You can read Julz's previous posts for the blog here:

Monday 27 July 2015

Miriam: Right Where I Am 2015: 1 year 9 months 3 weeks 2 days

So, I left my last blog on 27th July 2014 wondering if there might be a future rainbow. Turns out that there would be, and sooner than I thought with a bfp just three days after writing that.


We visited a local petting farm open day in September. It was a lovely day, though I was anxiously trying to avoid touching any animals and hand washing to OCD levels. While there, we saw a man making objects from weaving willow. Without knowing I was pregnant he made a baby's rattle and gave it to me. I also made a corn dolly - symbol of fertility. They became my good luck and were tucked up safely on Gabriel's shelf.

Of course it goes without saying that the rainbow journey is an emotional one. The inner turmoil of 'what if it all happens again?' is never far away. I just felt so detached I had to force myself to buy baby clothes and took 6 weeks to pack the hospital bag. Whilst I breathed a little easier after reaching certain milestones, I don't think I really felt certain that we'd be bring a baby home until he was in my arms.

Then there are the little digs made by others. The hints that of course, everything will be fine now, because a 'replacement child' will surely make everything right. And there are all the usual antenatal appointments that are now far from that. That innocence of pregnancy before loss now robbed. It's not usual to cry before going for an ultrasound scan, but when you've heard those awful words 'I can't find a heartbeat' each and every scan was met with trepidation and held breath until a heartbeat was found.

I really do think that across the board, maternity services need to be much more aware of and sympathetic to the struggles of a rainbow pregnancy. From the stupid small talk of 'is this your first?' Have you taken a moment to read my notes? Did you not see the large count the kicks loss sticker I put right beside my name? To being told that my concerns about things that had previously happened at the time of Gabriel's birth, that should have happened to no woman, being dismissed as 'irrational' as they 'just don't usually happen'! Err... hello? They happened to me! How do I say 'you'll never get a sensible bp reading off me in that room, because of what happened previously'? Being kept waiting in triage for a ctg bringing on the tears, and when asked to explain why, being told 'Well, it's best not to think about it'. Really? Are you for real?

However, in my case it was my loss of innocence I think that saved my rainbow baby this time. I kept the pressure on my consultant to not let me go over my due date. This resulted in several failed sweeps, which in turn led to a scan the day after my due date to check my fluid levels, placenta function and baby's head position.

As the sonographer placed her probe at the top of my bump, 'Well, there's the head!' she said. My previously supposedly head down baby was now footling breech. This triggered a whole new birth plan. I was kept in for monitoring of my raised bp and plus protein, while they tried to get me on an elcs list - no mean feat the week before the Easter weekend.

A sudden feeling of relief oddly as this meant a whole different birth form Gabriel's. No fighting to get past the mw on the phone, or the woman in the desk at the ward. No sitting in triage! Small things, but they'd been massive concerns.

After my baby, a gorgeous 8lb 13oz boy, was born, the mw told me when I was back in the recovery bay, that as well as being footling breech, there was a true knot in the cord. Gabriel, I truly feel that you were watching over your little brother, and I sincerely thank you.

Today, my little rainbow isn't so little. He's rapidly approaching 4 months already. His babyhood is passing by far too quickly and I'm fighting against accepting the reality that he probably will be my last baby. I'm not a young parent and I've had truly awful SPD with all three pregnancies. I just don't think I can put me or my family through it again. And yet, I'd really love another. I'd love another baby. I'd love a little girl. I'd love.... But there's also the feeling that it wouldn't matter how many children I had: there'll always be one missing and so our family will just never feel complete.

Where am I right now?

Once again I'm wrapping birthday presents and feeling blessed. How many children do I have? I have three - I have my Sunshine, my Angel and my Rainbow. I consider myself a very lucky mummy to have each of these three.

~~~~~

You can read Miriam's previous post here:

Right Where I Am 2014: 9 months 3 weeks 2 days

Thursday 23 July 2015

Jennifer: Right Where I Am 2015: 6 weeks

Today I got out of bed just before midday, which isn't too bad for me at the moment. I don't feel any need to get up, whats the point? It's been 6 weeks since I gave birth to my precious, perfect sleeping beauty Beth at 39+3 weeks. She is my first born, my little lady I had been keeping comfortable and safe for 39 weeks. My little angel who liked bath times where I played her my cheesy music in exchange for her kung fu kicks, my little plum who I told stories to and whose nursery was filled to bursting with all the little dresses, baby grows and items I would need to keep her warm and happy, and bath stuff that would make her smell delicious enough to eat. I couldn't wait to meet her. I was scared though. I am 30 and work as a paediatric nurse, so I knew how sick and poorly babies could potentially be. Even if I had to stay awake for the first week or so I would make sure she was safe and watch her every breath. That was my plan. But all that changed.

I went in with reduced movements at exactly 39 weeks .. Beth was more of an evening wriggler, whilst I was watching TV she would let me know she was there. But that evening my partner and I tried all we could and she would not move, so we called and went to labour ward as advised. I thought my girl was quiet as it might be the start of labour or maybe she had turned or something. I had a scan and was told her heart had stopped beating.. I'm sure mine did too at that moment. I wanted my baby out there and then... Maybe they could resuscitate her, I could help. But no. She was gone. There was nothing, no pain no bleeding... Just reduced movements and it was already too late. The hospital was only 5 mins from us I couldn't have got there any quicker.

A few days later I did it, I gave birth to my baby, my daughter, my Beth. One of the many worse days of my life but also one of the happiest. I finally got to meet her. To see her. Her beauty was astounding. Family and friends came to see her and said how much she looked like her daddy and how stunning she was. We stayed with her for 2 days, it would never be enough.

Fast forward and here I am 6 weeks later. We have an album full of pictures, two picture frames hung in the living room, three picture frames on the sideboard and three canvasses above our bed. We have a memory box and Beth's ashes. Her body home at last. I take her ashes up to bed with me every night, I promised her I'd never leave her alone again at night. I had her for all of her life and she will have me for the rest of mine.

The crying continues everyday, the sadness, taking over my whole body at any given moment. I try and stop these tears but I can't. I can't control the endless grief that has consumed my life. The endless forums and groups I've joined are now my life. Like many bereaved mums have said… A part of me died with Beth. I want to tell all these expectant mums to be careful - they might not get to take their baby home - not to get too happy. I can't see anything positive ever happening. I want to scream and shout, I want people to ask if I have children so I can say yes and tell them about Beth. I want everyone to know she was here and she will always be my life and my baby but I will never hold her again. I will never hold my Beth, her body is gone. I still can't accept it. I still don't want to believe it I wish I could be with her. I would swap places anytime if it was possible.

I was always scared of death, but now if that means I'll be with my baby then I'm not scared. To hear Beth laugh or cry, to see her eyes open and to watch her grow is all I want. I just want to be normal again.

That's where I am...

I want to change the past. I want Beth alive and snuggled into me. I want to kiss her nose and her cheeks and never let her go. I want her body to be warm against mine and her cheeks rosy and pink. I want her so badly.

Wednesday 22 July 2015

Lindsay: Right Where I Am 2015: 1 year 11 months 18 days followed by 14 weeks 1 day

As I'm writing this it's been 14 weeks and 1 day since I lost my daughter, Esmae. I'm sure it's the same for everyone, but I shouldn't be here right now. I should be on maternity leave getting ready for my baby's arrival. It wasn't supposed to be like this. It's as if everyone else around us has moved on and has already forgotten about our little girl. Meanwhile those who were pregnant alongside us are still the centre of attention. But that's just life I suppose.

I seem to be moving forward through my grief much quicker than last time. You see it's been 1 year, 11 months and 18 days since I lost my son, Hunter. Three months on from losing Hunter we still didn't quite believe what had happened, we still don't believe what happened with Esmae, but it's different this time. Grief doesn't have a set path you can follow. You just take each day as it comes and you have to accept there will be some really dark days, when you feel as if everything has just hit you all over again. There will be good days too however, and you need to learn not to feel guilty about having a good day.

This time round my grief hasn't taken me on the same path, but it's a familiar one, it's easier to navigate. I'm not suggesting for a second losing my daughter has been easier than losing my son, in many ways I feel more cheated this time. What I mean is I generally do find it easier to get through each day, to find my way. I think this is true only because I know better how to cope. I've been learning how to cope each day for almost two years now, but at least this time around I already know how I'm feeling is 'normal'. The new 'normal'. In all honesty I don't remember what it feels like to be the old me. I'm not the person I was two years ago, I'm not the person I was fifteen weeks ago, before I found out my pregnancy would not go full term. I sometimes feel I'm just a shell of the person I used to be. I'm nearly always anxious about the most stupid of things, I've become extremely paranoid and I have lost nearly all my confidence.

I know my limits, I know what I can and cannot manage. There are times though when I think I'm being silly by not being able to lead a full and 'normal' life – going shopping in town on a whim, being around large groups of people I may not know well, going out for drinks to a busy bar. These are things I took for granted before and now the thought of putting myself through situations like those can bring me out in a cold sweat, sometimes it can even feel as if I'm paralysed with anxiety.

Surprisingly though things actually improved a bit whilst I was pregnant with Esmae. My husband even said he was beginning to see the old me again, but since losing her I feel like I'm back to square one – some days I don't even think I'm on the board! I sometimes feel as if I'll only fully get that confidence back when I'm proudly pushing a pram in front of me. Maybe that's because I'll finally feel like I have a purpose in life, something to live for.

I have spent all the time since losing Hunter building an emotional wall. Since Esmae I've had to build it a little higher, but it is helping me get through this all over again. I both love and hate my wall. It shelters me from most of the things in the world that I suddenly started noticing – baby adverts on TV, pregnant women, prams, toddlers, baby aisles in supermarkets, the list goes on...but it also blocks out a lot of the rest of my (old) world. I sometimes feel as if I'm only half living. My more recent memories all seem a little dull, they're all in the dark shadow of the wall. It's as if everything has lost it's colour since the wall went up. I don't dare take it down though.

My wall is not impenetrable however, there are some things such as seeing/hearing new born babies which it cannot protect me against – they filter their way through the cracks. At the same time it's not so high and solid that it doesn't let people in, or my emotions out.

I find it easy to talk to most people about my babies. I want to talk to anyone who asks and wants to listen about my babies. That there is the key point – I will talk to anyone who asks and is willing to listen. It's not a subject everyone is thankful you bring up and then there is the odd time when I don't want to talk.

I thought after losing Esmae that I might be able to open up more to my parents about how I feel, but up until now this hasn't been the case. This time I tried to tell them straight out that it helps me to talk about my babies, their grandchildren. At first this didn't seem to work, they were still looking for my lead all the time, but I had long since given up as my previous attempts to let them in had failed. I assumed they wanted to protect me, but by not mentioning my babies at all they left me doubting how they felt about their grandchildren. Hopefully since writing them a letter and sending them an earlier draft of this blog, which sparked a very tearful (on my part) conversation with my mum, things will become easier for all of us.

It had got to the point where my wall was always up around them, blocking them out, and I couldn't work out how to let them in. I didn't think they truly wanted to see what was the other side of my wall and although I thought I'd tried various ways to let them in, nothing worked, perhaps I was being too subtle. I was trying to find a way of letting them know I needed more from them without causing them unnecessary pain. (I say unnecessary pain, because there's no magic pill that will make this painless for any of us.) I think I still need to help them realise that pain is a natural part of the grieving process though and it can be cathartic. Exhausting, but cathartic. I don't see feeling pain/showing your emotions as a weakness, it just demonstrates you are strong enough to endure each day, strong enough to get out of bed and try to get on with what's left of your life. For the last couple of years I've really needed my parents to realise this. They've been trying so hard not to upset me, but they never fully understood that there is nothing they can do or say that will make me feel any worse. Saying nothing at all is the only thing (for me) which makes it worse.

I'm hopeful after talking openly with my mum that things will change. I still need to work on showing my true emotions in front of her and my dad, but I need them to not feel as if they are walking on eggshells around me and my husband all the time. Saying my babies names might bring tears to my eyes, but I love hearing people talk about them, it reminds me that they mattered. I still need to help my parents realise that it's ok for me to cry, it's ok for me to breakdown, to not be able to breathe because there's a pain in my chest which takes up all the space for air. These are all natural parts of grieving, it's not something I can suddenly switch off and get over. All those things are normal to me now.

Although they'll already know, from this blog, we've started trying again, I think it'll still take some time before my mum will feel comfortable discussing that with me. I want to be able to confide in my mum if I take a test and it shows up negative or tell her how depressing it feels when you don't even get as far as taking a test. I think she feels a bit useless though because she can't just wave a magic wand and fix everything. She has no frame of reference as she never experienced any problems during her pregnancies (although my birth was pretty traumatic, but she took that in her stride!) Sometimes I just need someone to listen, even if they can't tell me everything will work out fine in the end.

Trying to conceive again after a loss is so tough. It can consume your life. We felt last month that we were ready. I think we both sometimes feel the months ticking away and although I feel guilty saying this, I do feel as if we're another year down the line and many more months have been wasted. Unfortunately our first month of trying again didn't work and I thought I'd be ok with it, but during those few days last week I just felt in limbo and it brought back memories of how desperate I felt all those months after Hunter, trying without success. It just hits home again that I should be heavily pregnant right now with Esmae and getting her nursery together.

Perhaps some would say if I feel this way then maybe I'm not ready to start trying again, but it's hard to explain the overwhelming urge to keep on trying to someone who hasn't suffered the loss of a baby, the loss of three babies. We started trying again about three months after losing Hunter and to be honest I sometimes felt a little relieved when we didn't conceive (just for those first couple of months though). I realise now this was probably because we were still so deep in our grief that we weren't quite ready. When we eventually did get pregnant it unfortunately didn't last long. Finding no heartbeat at 7 weeks and then passing the baby three weeks later. The 'Little One', as we refer to her (we feel she would've been a girl), had given us the hope we needed, a definite sign not to give up. We were then lucky enough to conceive Esmae almost straight-away – it was like she was meant to be…

We are now two and a half years further down the line from where we began and although I don't know what the future has in store for us, I do know I'm ready to try again. I'm ready to let it consume me again, to become my life again. It's the only way I can keep getting out of bed each morning trying to move forward.

Monday 20 July 2015

Lynne: Right Where I Am 2015: 1 year 10 months 2 weeks 1 day

Sometimes I feel like the last couple of years have been a dream; so much has happened it’s hard to believe it’s real.  This time two years ago I was happily pregnant with my first baby.  We were excited for the future and could never for one second have imagined the outcome.  There was no possible way to know that in around six weeks time from that point we would go for our anomaly scan and our world would fall apart as we were told our baby was too sick to survive.  On 20th July 2013 we held our beautiful tiny baby son, Findlay, in our arms.  He never breathed our air but even at that point I knew I would never be the same person I was before.



Now, almost two years later, the pain is still there, maybe not as raw as it was in the beginning but it never goes away.  Somehow, with a lot of help (special thanks to my counsellor Jeni at SANDS Lothians for this one) I have learned to live with it.  The absolute best healing has, however, come from my beautiful rainbow baby, Cameron, who has made me smile like I never thought I would ever again.  Born three days before his big brother’s 1st birthday, the last 10 and a half months have been the happiest of my life.  Yet, with everything, bittersweet.  It’s hard not to wish that Cameron had a big brother who was here physically that he could play with and giggle with.  It’s hard not to look at Cameron and wonder if his big brother would have the same big bright blue eyes and blonde hair which is starting to develop the sweetest little curls.



I am a mother of two but only hold one baby in my arms.  I have lost count of the number of times I’ve been asked that oh so innocent question ‘is he your first?’.  At first I wanted the ground to swallow me up not wanting the other person to feel awkward, however, slowly I am learning to respond with honesty and tell them that my first baby died.  I am sorry if this makes the other person feel awkward but that is the reality I have to live with every day of my life and I will never deny either of my children.  I love them equally and they have both enriched my life in so many ways.

I feel blessed to have had the pleasure of spending even the shortest of times with Findlay and having the chance to create so many precious memories.  He is and always will be my true inspiration.  I feel blessed to have the chance to watch his little brother, Cameron, grow and develop every day, he is and always will be my world.



I always wanted two children so I could watch them grow up together.  Sadly that is not to be so right where I am is trying to decide whether I will, at any stage, be brave enough to embark on the rollercoaster of another rainbow journey.

(written 4th June 2015)

Wednesday 15 July 2015

Clara: Right Where I Am 2015: 4 years 3 months 1 day followed by 3 years 2 months 11 days

I wasn't going to write a post this year. I've been thinking and thinking and just couldn't find the words. I didn't really know where to start. I still don't but I was at the girls' grave today and felt I had to come home and write. Just some musings... no literary greatness... just some thoughts.

I remember thinking my title to these should always be much longer…

4 years 9 months followed by 4 years 3 months 1 day followed by 4 years followed by 3 years 2 months 11 days followed by 2 years 7 months

Just sounds ridiculous. Sad. Stupid. Depressing.  Honestly? I still can't believe that it is my story, that it all happened to me. I think I lived in a daze for a long time.

I struggled with the lead up to the girls' birthdays this year, much more so than ever before. A few days before Molly's birthday I opened an app on my phone: Timehop, 4 years ago today... my status was about a day we spent in St Andrew's. Great start to the holidays I said. I remember it clearly right down to the clothes we were both wearing. It was a beautiful warm day, we walked along the beach, I felt Molly moving. We were so full of hopes and dreams and so very happy.

Two days later she was gone and was then born on the 14th. Just reading that gave me a great big slap and I felt it right in my guts again. I struggled to keep it together for the next few days. I was such a different person then. I'll never be that girl again. I can see myself in my head on that day, so happy and so carefree. That day I just felt that it was all just shit. Those two little girls will always be missing. People just don't get that.

And then of course came the guilt. After all the loss, I was now in the position where I was a mummy to a living, breathing child. The most amazing little girl who has brought so much joy, laughter and healing into our lives. And here I was in a crying mess. What good does that do for the little miracle now here?

So I guess where I am right now is balancing the juggling act that is mothering 3 children in 2 entirely different ways: 1 who is here and 2 who are not. And realising that it is okay to still have days when I am sad. Mostly I am incredibly grateful, as always, for my little rainbow and for the support around us from friends and family. I am incredibly blessed.

~ ~ ~ ~ ~

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

Right Where I Am 2014: 3 years 3 months followed by 2 years 2 months 1 week
Right Where I Am 2013: 2 years 2 months 2 weeks followed by 1 year 2 months
Right Where I Am 2012: 1 year 2 months followed by 1 month 10 days

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

Massive Perivillous Fibrinoid Deposition
My Story
When loss keeps on happening...

Wednesday 8 July 2015

Laura: Right Where I Am 2015: 2 weeks 1 day

Everyone thinks I'm doing well and being brave. They tell me I'm an inspiration, that I'm strong and how well I've handled all of this.

I think it's because my heart is so broken that I want to hide it away from everyone else and pretend I'm going to be ok.

But I'm not.

My arms ache for you so much. You may of been born sleeping at 21 weeks, but I can feel that you are missing from my life, my beautiful daughter Gabrielle.

Through the day, out of nowhere, it will suddenly feel like a hole has been punched through my chest and like my throat is closing up. I just want to fall to my knees and beg with the sky to give you back to me and to see you open your eyes.

Just to hold you again.

I've even thought about just walking for hours and hours like I might somehow find you. Or climbing hills so maybe I'm closer to you.

I know you're there watching over us, but right now that isn't enough for me and it doesn't stop my deep longing to have you in my arms.

I watch your big brother Logan playing and I feel so sad that you'll never meet him. That my body let us down.

I'm a mix of so many emotions and thoughts, but I have to lock them all away for the day as best as I can. If I cry Logan cries. So I have to hide everything until all those feelings creep up on me once I'm in bed at night.

I wish I could come and be with you, even just for a few minutes. I think you took a part of my heart with you the day you left me.

I know I'll learn to live broken hearted, Logan will keep my heart warm, but it will always be broken. But one day when I'm old and its my time, I'll finally be whole again when we are together.

Until then, I will do my best to be what everyone thinks I am; strong, brave. And I will carry on even when my heart is so broken and heavy, just for you.

xxx

(written 29th June 2015)

Tuesday 7 July 2015

Lauren: Right Where I Am 2015: 4 years 8 months

I don't feel like I've moved on much since last year. I could copy and paste my entry and it still be relevant now. I suppose that is where I am. I don't know if I will ever feel any different. I'm in a place that although I still cry I don't do so often and afterwards I'm so good at hiding it that no one would ever know I'd cried. Then sometimes I feel guilty for this. Like I'm wiping away her memory with my tears. It's not ok that she has gone but I'm ok. Bereaved but not broken.

I wish I knew how to move forward as it is a strange and somewhat (looking for the right word, bitter? no) begrudging and resentful acceptance I feel. Maybe next year will be different but I doubt it. Maybe how I feel it the end of the rollercoaster of emotions and I'll feel like this the rest of my life? The life of a loss mum is not one anyone wants or is even willing to think about in their happy world but I live it. Sometimes with a heavy heart or sometimes with happy memories depending on my mood.

I've come a long way since those early days. Life moves on,  the world keeps turning but a part of me longs to go back. As time goes on I feel like I'm leaving her behind. My baby died. But I've come so far that it surprises me. 4 years and 8 months feels like lifetime. I can't remember the early days of loss. Like I was a robot, the lights off and wandering through shadows. My brain adjusting to the pain.

Occasionally I have moments of 'what if ......?' But I try not to. My rainbow was born 5 days before my angels first birthday and I find it hard to wish for her back knowing that had she lived I wouldn't have my boy now 3. I wouldn't swap, I couldn't choose between them. My youngest boy, nearly 2, still looks like her. I want them all.

We've decided to try again next year and the thought of a little brother or sister joining her is putting me off ordering her headstone as I'd want them buried together. I'm not superstitious or usually so pessimistic but I can't shake the feel of dread. I've lost the naivety.

I hope some of that ramble made sense. I'm sorry for all your losses.

Hugs,
Lauren x

~~~~~

You can read Lauren's previous post here:

Monday 6 July 2015

Karen: Right Where I Am 2015: 4 years 3 months and more

Have been meaning to do this since I was first introduced to this blog.

Not having a good day today, so thought it would be a good idea to get it all down & "self counsel" myself.

So where I am today? June 1st 2015.

I am 4 years 3 months from Angel one, my wee boy Dinky.
I am 2 years 3 months from Angel two.
I am 1 year 4 months from my second known wee boy Angel three.
I am 7 months from Angel four and a few weeks away from what was my due date.

I think that is why I am feeling particularly 'blah' today.

It is now June, the month I should be excitedly preparing for my fourth rainbow pregnancy to end and to finally meet my rainbow baby. I say ‘finally’ because my trying to conceive journey for baby number two began in September 2010.

I am fed up. Fed up of all these months of just wanting my husband for his sperm. Fed up of two week waits and then the tantalising 'am I?' when Aunt Flo decides to torment me & come a few hours or days later than expected. I am fed up of getting that exciting BFP and the subsequent nervous breakdowns I feel wondering if it will continue. I am fed up of seeing my wee bean wriggling on the ultrasound screen only for it to be snatched away from me within weeks. I am fed up looking at countless announcements on Facebook of people I know & of celebrity pregnancies, and I am fed up by passing three due dates and nearing due date number four with no baby to show & no pregnancy underway. Anyone get the impression that I am 'fed up’?

I have been diagnosed as having an under active thyroid with antibodies in January and I am on treatment now for this. My body more than likely had been attacking my wee babies and this is horrible. I am totally to blame. Nobody else. I am piling on the weight which is probably a lot down to the fact my thyroid is screwed, but also because I am eating as I am sad. I need to get a grip. If I was pregnant I would be putting myself & my baby at risk of all sorts being so overweight.

I know how lucky I am to have my gorgeous daughter who is six. I hear all the time how I should appreciate how lucky I am. I DO!!! I would actually be lost without her. I hear should we not just give up & accept what we have.  My daughter has kept me from spiralling into despair, but it does not take away the need I have to extend my family. I am not ready to give up. I do not want to let this beat me. I have spent money getting a uterine biopsy to check I do not have high uterine killer cells and, as far as I know, the only issue I am dealing with now is my thyroid which is under control. The main problem now is getting my husband and I in the same place at the right time.

When is enough enough though??

I am not ready to give up! Should I? Should I accept I am only meant to be a mummy to one & four angels? I don't think so, but can I go through more heartache? Is my head going to be able to deal with another loss? I'm getting older now. Am I too old at 36? Physically I know it's possible. I am a midwife, I see it every day, but will it be possible for me?

So while this is a 'fed up' post & I am sorry for bringing anyone down, I feel I need to continue. I think I will know when enough is enough. I am hoping that I won't get to that stage though. Is my rainbow take home baby out there for me? I hope so. I need to believe it.

(written 1st June 2015)

Sunday 5 July 2015

Kirsten: Right Where I Am 2015: 8 months 1 week

Our beautiful girl, Eilish died in September 2014, aged 9 months and 24 days. She seemed a healthy, normal baby at first and then struggled with severe reflux, struggled with feeding and putting on weight. At 5 months old she was diagnosed with an incurable enzyme deficiency called Krabbe Leukodystrophy. We were told on average babies with this genetic condition life for 13 months but most die before aged 2. We didn't even get 10 months with our darling girl.

Time is not healing. Time is making me miss Eilish more. My whole life since Eilish's diagnosis has been turned on its head. I no longer have the optimistic, everything will turn out fine attitude that I used to have because - well it didn't turn out alright, my little girl died. I am carrying a heavy weight around that I can never put down. It did seem to 'not get any heavier' for a few weeks but it's heavier again. It just seems like every day since the first anniversary of Eilish being admitted to hospital is ingrained in my head. I started a blog a year ago last week and from then until the day EIlish died - exactly 4 months - there is at least one entry for each day.  All I know is that I can function normally, for the most part, but the pain I feel at times is so acute and worse than it's ever been. I have been thinking about this a lot and I've come to the conclusion that it will never get better or easier to be without Eilish, but that I am getting used to it and it is part of me and my new life. So although I still have bad days/ weeks, I feel it's more predictable. There are still things, situations that catch me off guard and hit me hard, but for the most part I know how it goes. I 'get on with' life or, more accurately, it carries me on, then an anniversary comes or a particular memory hits and I have a few bad days - it's a release to let it all out - and then I go back to life for a few weeks. I seem to be able to hold it together until another anniversary or memory strikes again. There are times when I get longer in between these. Then there are times when I feel guilty about laughing and smiling - and all I want to say to people is that I may be laughing but there's still a part of my heart missing, my laughter and joy is not at the same level it was before but I do still find happiness around - especially with our 2 boys (aged 4 and 2). There are times when mindless chit chat is fine but when I'm having hard days then I can't be bothered with it and everything seems trivial so on those days it's easier not to be in social situations.

It's now been 8 months since Eilish died and in many senses they have passed in a flash. I am dreading when it becomes 9 months because then it will then only be a matter of days until she has been gone for longer than she lived and that fills me with such sadness, that her life seems so fleeting. However, she will never be forgotten. I find it difficult to think about happy times with her as all I can think about was the pain and suffering she went through and how awful it was to see her struggle and know she wasn't going to win her battle but she was such a happy wee thing with a cheeky wee smile. She loved music and singing and she loved her big brothers.

So I'm here, living this new life - a life I haven't chosen - and trying to make the best of it. I am thankful for my husband and my 2 gorgeous boys and the for the life we have. I am making plans to go back to work. Our eldest boy will start school in August and our youngest son will go start Nursery in August too. I am not moving on but I am moving forward. Part of me will always be in the past with Eilish, my heart will always have a piece missing and our life will always have an Eilish-shaped hole in it.  I will always be Eilish's Mummy and proud to be. x

(written 16th May 2015)

Saturday 4 July 2015

Clare: Right Where I Am 2015: 17 months 13 days

17 months and 14 days ago I woke to hear my OH screaming ‘Clare the baby'. I replied what and looked. My beautiful baby Henry was unresponsive. I knew he'd gone. I was right. SIDS had claimed another victim but why my baby? why my boy?

The weeks went by.  Christmas came and went. His funeral. I returned to work. I carried on.

Underneath it all I was obsessed - who else had lost a baby to SIDS. Which celebrities had been through this, which people I passed in the street. Who? Why?

I needed a baby. I needed to be a mum. My other obsession.

Luckily it happened quickly. A rainbow pregnancy ... every scan came filling me with dread. The 20 week confirmed a girl... we felt strange. But I'd lost a boy, why a girl? Then it made sense. She couldn't be compared... she'll be her own person. Girl babies are stronger, less likely to die from SIDS.

In January this year, on her due date, Beatrice, my rainbow entered the world. She is now 18 weeks old, her brother died at 7 weeks.

When we passed her 7 week mark things changed from when will we lose her to what if we lose her. Things suddenly weren’t so definite. A slight sense of relief.

Things are easier and she has filled a small hole where her brother left. I wish they would have been able to know each other but that was not to be.

Now I just pray my angel is watching down on us and smiling. I miss him every day. I want to kiss him just once more. I hope he knows how much I love him. I'm sure he does xxx

(written 14th May 2015)

Friday 3 July 2015

Lynsey: Right Where I Am 2015: 4 years 4 months

It’s been 4 years and 4 months; we have lived so much longer without her than with her.

I am proud to say I am a survivor, however I am still healing because I am still loving. I am sad that I know now so much pain and I will never be the person I was before.

I am in a place of answering my little children’s voices about death, where their little sister is right now and which star she is on.

I am in the place of being as fragile as I am tough, as whole as I am empty, and as lost as I am sure of exactly where my feet are planted.

I am in a place where I feel more confident as a person and I am a better person for losing Lilly.  I am doing things now I would never have had the confidence to do before.  I went back to college and graduated with a HNC, I am now a pupil support worker in a local primary school.  I feel she has taught me to be more appreciative of what I have.

I feel that I can finally tell that someone that once was me (not being able to imagine the years) that it will be ok, you will survive and come out the other side uprooted, empty and bruised.  But unbelievably stronger, that we can move through life with understanding and purpose for life so much more than we could ever have found without someone leaving our arms and leading us to it.

Lilly has shown me to make sure Hannah, 11 years old, and Liam, 8 years old, have a happy, fun and wonderful childhood with magical memories where they will never say their mum was always sad.  They will know that through all the pain I made sure their life was great.

I want to me someone who inspires my children to keep going when things get tough and be all they can be.  I thank Lilly for that x


This poem was written by daughter

My Little Sister

My little sister is like a rainbow

My sister lights up my world

Her eyes are as blue as the shimmering sea

Her face is as red as a soft velvet rose

She is so colourful when she is watching over us

She never stops glowing in the night

She never stops glowing when we look at her

We miss you very much love from all of us


(written 13th May 2015)

~~~~~

You can read more about Lynsey's story here:

Lilly Berwick's Story

Thursday 2 July 2015

Jen: Right Where I Am 2015: 10 months 1 week 4 days

It has been almost a year since we found out the heart of our second baby had stopped beating on 30th June 2014 at 15 weeks and 5 days gestation. We had already bonded with our baby so much in the space of just 4 weeks... from those four weeks, we learnt that she was a girl, she had defects, a possible severe disability, she was a rarity and a fighter for staying with us past 12 weeks. She would wave at us during scans, she was a wriggler, and was a good average size for gestation. We felt like we had got to know our unborn daughter so well in such a small space of time so when I heard no heartbeat, only eery whooshing, I covered my eyes and wished I was somewhere else. I couldn't identify the motionless blurry image on the screen as our feisty baby, We had faith that she was going to survive. Instead of being handed an appointment card for the next scan I sat there thinking about having empty arms in December on her due date and carrying on as normal.

Since then I have carried on, functioned, been busy with my son,  trying to give him a good life without a sibling. I feel genuinely hurt by the word 'only child', I cannot identify my son with this term. I feel he carries a part of his sister, as do I. She exists in our everyday lives, in very subtle but special ways. A pretty baby dress catches my eye or a nice plaque and I instantly think of her. We miscarried our rainbow baby in January, at only 10 weeks. It was a big blow, especially so soon after Charlie's due date. We were not ready for another loss.

So where am I in 2015? I'm in a better place, I'm healing, I'm gradually learning to live a wholesome, happy life with Charlie living only within my heart.

(written 12th May 2015)

Wednesday 1 July 2015

Helen K: Right Where I Am 2015: 3 years 1 month 6 days

It has been a while since I've blogged.  I have slipped out of the habit, or the need, to blog as often as before.  That doesn't for a minute mean that I have nothing to say, but it is more a case that most people don't listen now like they used to.

It is now 3 years, 1 month and 6 days since I held my son in my arms and had to watch him die.  I could dress this up and make it more gentle, and say he 'left' or he 'flew away' or he 'became an angel', but I can't say that in this blog because he did die, and so did my future plans and my 'family unit’.



I have realised now that this wasn't my hardest day.  My hardest day has been living every single day since that moment.  Feeling for things, and searching for things to make my life 'worth it'.  I haven't yet found that, I am still searching. I still know exactly how many days I have survived.

But, I can now pretend.
I can laugh more freely, but noone really looks in my eyes.
I can cry now and again, but noone gets to see my despair.
I can joke around, but noone sees the tears of the clown.

I live my life in 3 parts.  Before Haydon.  Haydon.  After Haydon.  There will be no other part.

Am I who I was before Haydon? - No.  I barely resemble her, in looks or values.  I can't list everything because the changes are too vast, and they hurt too much to remember.

The people that know me really well see glimpses of the old me, but briefly.  They love those moments, I can see it on their faces, and their body language.  They hope that the old 'Me' is finally back.  But it doesn't last for too long because then I remember.  Then I feel, and I think, and I'm the new 'me' again.

I no longer hide my grief to protect others because the hardest thing is hiding him, that boy, my son, my life and love, my heart.  Haydon.  I may wait to say what I have to, because not all times are appropriate, but if I feel the need to speak up and out about him, I will.  That is different.  His life is just as valid as anyone else's child.  His experiences count and they do matter.  Hiding him hurts me.



This year is bringing further change.  A change that I never for one second thought I would celebrate.  Or that Jim would celebrate.  But, we will.  We are ending our days of fertility.  The advice was always that I wasn't strong enough physically after all my losses to try for another child, but after Haydon we didn't want another child anyway because we only wanted him.  We struggled with the guilt of not wanting another, either though adoption or fostering or surrogacy.  We allowed ourselves time to change our mind, but our minds are still the same.  No other child would be him, so we are ending this phase permanently.  We have sought advice and the wheels are turning.  My health is still fragile, so Jim is getting a Vasectomy.

For my entire life of being surrounded by children, and raised with so many, all I wanted was a big family of my own to love.  Jim only has a brother, so for him the idea of a large family was frightening, but exciting.  We hold no excitement or hope for this anymore.  We are focusing on 'Us'.  Just 'Us'.  And our beautiful hearted dogs that are our 'family' now.

We expected that decision to be hard.  It wasn’t.

So where am I?  I am still putting one foot in front of the other and I am still easily thrown, still lacking confidence and panic at the thought of large crowds and busy places, but I am more able.

You can't describe this journey.  Not really.

But I can thank those who have walked beside us, and still are walking.

Thank you.

(written 12th May 2015 and originally published on Helen’s blog myweebubba)