John: Shield

Firstly, this is how my wife and all four kids make me feel:

This is how Wikipedia defines a shield:

“A shield is a type of personal armor, meant to intercept attacks, either by stopping projectiles such as arrows or redirecting a hit from a sword, mace, battle axe or similar weapon to the side of the shield-bearer.

Shields vary greatly in size, ranging from large panels that protect the user's entire body to small models (such as the buckler) that were intended for hand-to-hand-combat use. Shields also vary a great deal in thickness; whereas some shields were made of relatively deep, absorbent, wooden planking to protect soldiers from the impact of spears and crossbow bolts, others were thinner and lighter and designed mainly for deflecting blade strikes.”

For me, and for many like me, shields are what we show the world.

The smile that everyone thinks I’m alright.

The easygoing manner that covers up the incredible pain and suffering.

The hand that covers the yawn because I haven’t had a good night’s sleep since Julie told me she was pregnant with Melody, the fear of losing another stopping me from ever truly sleeping fully.

Today two years ago we lost our little girl, Melody Caitlyn Scott.  She was born early, but she was born healthy; she was a fighter like her dad, like her mum.  She was a Scott through and through.

And yet, through a whole list of things, she didn’t survive beyond 35 days.

To walk in to the Neonatal unit and be told “I’m afraid she’s not expected to survive.”  To watch the nurses and staff helping her breathe, just so we could say goodbye.

To be honest, I wasn’t sure what to feel.  I didn’t cry, but my worst nightmare had come true for a second time, and once again I had to watch a daughter die in my arms.  The only time I really cried that day was when I phoned my mum and dad and told them what had happened, and I started welling up, because my brain was starting to catch up with losing Melody.

The next day was a blur, I was in shock, could barely speak, could barely do anything except vomit all over our bathroom at 5 in the morning.  The registrar didn’t help matters, neither did the chaplain at the hospital, when we had to go back for the death certificate.

That was two years ago.

Now, I don’t cry, not because I don’t want to, but because I can’t.

I don’t know why, maybe it’s a man thing.  Maybe it’s something worse, something darker like Batman.

Not sure.

Now, I’m off work for ten weeks, and people assume I’m fine, that I’m just doing it because I can.  I don’t really have any friends anymore besides my amazing wife Julz, because I’m tired of losing friends to the reaper, and have a hard time making new ones without that thought in the back of my mind, especially in the last two years.  Nobody asks me if I’m alright except Julz and the health visitor; no organisation is bothered with helping me through my pain except for a locum GP at my surgery.

Kelsi is not a replacement, she was planned only a couple of weeks after Melody was born.

All I’m saying is we miss her.

I’m not alright.

But the shield will always be there.

Julz: An Anniversary

How has it been two years?

How was this the last thing I remember about being normal?

A simple photo that would become a favourite, but also the hated. The one that we took for granted the we thought we could repeat as a whole family, as her biggest sister was missing that day. The photo we so naively thought everything was perfect.

Only for the next one, taken less than 24 hours afterwards to be the exact opposite.

The ones that followed would become the faces of bereaved parents, not just a happy couple. From the numb and speechless.

Our changing eyes, less heavy than the one before, yet the pain is still as heavy as the first.

Showing the world that we aren’t beaten, if at times we feel nothing but.

We never envisaged that walking through the unit doors two years ago, to be greeted by the words, “She’s not going to survive”  would be anything but a nightmare, an April Fools’ joke.

Broken, beyond repair, no easy fix solution.

No faith, no beliefs would ever put this right.

No believing that she is all around us, or visiting every body else.

No fluffiness or making the sun shine.

No finding feathers, or the butterflies floating by.

The only place she resides is in her mum and dad’s hearts.

My damaged mind searching for why people think they can “feel” her, when all I feel is numb. When I’m told that she can be felt by other people it makes me then wonder does Melody blame me? Does she STILL not belong to us? Our Daughter, but not our own.  Was she ever ours in the first place?

My shattered thoughts searching for a way to go back and change things, when indeed that is impossible.

No believing that everything happens for a reason,

(neither do I believe that Melody died so we could have her sister).

I cannot think why we were allowed to get to know and think our baby was ok.

Then be taken away. What would ever be a good enough reason for this? I sometimes wish I could believe in a reason, maybe it’ll appear one day, maybe it won’t. I won’t get, lost looking.

I have changed, I don’t know who I am any more I don’t want to forget her, of course I don’t she is part of my life, my daughter.

But now sometimes I feel as though I am living for the next milestone.

The next person to walk away from me.

I just want to feel human again.

I’m slowly regaining a social circle, but am petrified of getting close to them,

or letting on too much about Melody or doing something

All trust lost.

I feel awkward in the way I am.

Still having people tell me they don’t know what to say to me.

How do I find me again?

How can I learn to be normal again?

To the outside I put up a mask, a very good one at that.

I’m done with grief,  and watching others grieve for her, when I can no longer cry, “Melody doesn’t wanna see mummy sad” So she won’t…

I want to learn to walk as high as 10 feet tall, rather than the 10 inches I feel at times.

I want to be her mum but not like this.

I miss her so much.

When I look back to see where I had come from to where I am,

I feel like I have paused and feel the same as I did then.

I miss her, there is nothing that will ever change that, and I will speak of her often, maybe now not as much. My heart will always feel that Melody sized heavier.

But learning to live a new life moving forward, but without leaving her behind.

I hope I can stand as strong, tall and as inspirational as the other parents in this community.

I am now a little more than existing, which feels better than it was…

Two years since we said Goodbye.

“As long as I am living, forever my baby you’ll be”

26.02.2012 – 01.04.2012

Alicia: Not Understanding His Condition

It was our 12 week scan and we went in so excited yet the lady who scanned me didn't look at me… that's the first time I knew something was wrong.

“I am really sorry yet you have an extremely high NT.”

My partner looked at me, his face full of tears, not understanding. She went out the room to get a specialist and the tears started, the last time I cried like that was when my OH’s dad passed away last year, as my OH was in so much pain. It killed me… this felt the same, well worse.

This was the first time we met our specialist midwife, I am so pleased we got her.

Over the next few days I decided to get the private harmony test, a blood test which could tell me if my baby had a chromosome disorder. Two weeks of waiting hurt me so much. The weekend before we were due to find out we stayed at bumble bee barn, we chose it as we called baby bumble before we knew their sex. On the Sunday my mobile rang, it was our specialist. “Great news, it’s all clear.”  I couldn't speak. “Would you like to know the sex?" Of course!!  “It’s a boy!!" My partner frantically rang family.

The next day we went in for a scan to see if the fluid had increased and it hadn’t, which wasn't a good sign. He was classed as hydropic. We had an anxious two week wait to see a consultant. Those two weeks killed me. I spent time listening to Leo's heart beat at home.

We sat in the waiting room with excited families. I felt envious, why us? I can’t explain it yet I knew they were going to tell me bad news. On that terrible day they did, I can only remember the words "I am sorry.” We were booked in on Friday to be induced and deliver baby. Leo was 17 weeks.

The day before I insisted on an amnio, the consultant said to me the baby had a chromosome disorder yet this was disputed, either way I needed to know.

After the amnio Friday came, we were given a quiet room and we waited 15 hours for Leo to arrive. He was wrapped in a white hand knitted shawl and he was beautiful. I held him, we cuddled for hours and the priest came and blessed baby. Those hours were the best times as he felt like our baby, not just a scan picture. I whispered that I was sorry to him and told him to find peace and look after us.

Onto our Leo's condition… we got the amnio results which came back as him having trisomy 13 mosiac, the harmony test hadn't picked this up. This meant he had no chance to little of being born from day 1. That hurt. We were told that this was not inherited however unfortunately over the next two weeks I became unwell and was admitted to hospital. On that day my world fell apart even more. My midwife specialist came to see me. “I am really sorry, we got the full karotype back from the amnio, it's translocation 13. We need to get you and your partner’s karotype tested.” OMG, we might not have anymore children! My heart ached.

A day later, I got discharged from hospital and we went to our Angel’s funeral. It was beautiful. We gave him a blue balloon in the sky to play with. We even had the same blessing he had had when born. We have decided to get his name in the baby memorial garden, we’re waiting 6 weeks for this to be done.

I hurt so much after the funeral. We had to go back to the hospital to get tested and the next day I had to go for a d and c which I am still recovering from. We now have another week’s wait to see if we are a carrier and, if we are, we will have to look at other options as you have a 1 in 4 chance of this happening again. We just couldn't risk that. We would possibly go for PGD which is where they extract our eggs and sperm and only get good matches or we would go down a donor route. Or even possibly adoption.

I can't imagine getting through the next days quickly but I open Leo's memory box and it makes me smile. My little boy gave me something so special and he reminds me there's always hope.

xx Angel Leo, 21st February 2014 xx

Nicole: The Way I Love You

As we approach your brother's first birthday, I find myself thinking a lot about you.  Of course, I think about you every day, in different ways.  Sometimes it's reflecting on what you might look like, or behave.  Sometimes it's about what your first word would have been, or when you'd have started to walk.  Sometimes it's to simply miss you, to yearn to hold you with all of my being.

Lately I've been thinking a lot about love. Because I love you and Barney with equal power and equal amounts - but I don't love you in quite the same way.  I can't, you see.  My love for you is abstract. It builds up inside me, but there's no release for it, no home for it to go to.  I keep my love for you with me, and sometimes I feel like I might burst from it. Like my grief, occasionally I take it out and give it an airing.  Concentrate on it, focus my thoughts.  Give it the space my love needs and deserves.   

My love for Barney is different.  It too is overwhelming, but I can show it every single day.  Every kiss, hug, laugh, everything I do for him.   The games we play and the things we teach one another.  And having him hasn't minimised my love for you, or made it insignificant.  The capacity to love is limitless - my heart expanded to love him too. It encompasses you both.

The note I left in your coffin promised that I would keep your memory, and your love, safe inside of me until the day I die. And I will, my precious first son, always.  You gave me so many gifts, and my gift to you is simply to love you, forever.  It feels like a meagre gift to give to you, the boy who changed my life, but it's all I can do for you.  I just hope it's enough.