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.       

Julz: A Brand New Year

As the new year approaches, leaving the old one a memory; the clock strikes midnight in the hope that at a turn of a date people change, for the new and improved better them.

Another date, that as a bereaved parent means that we’re leaving our baby even further into the past.

A distant memory.

Upon leaving 2011 our baby was safely holding on tight,

My heart used as part of a life support system.

Lovingly speaking of the excitement the New Year would bring,

Hope, happiness and joy,

The happily ever after.

Leaving 2012, clinging onto our baby’s memory ensuring that she will stay in my heart forever,

With hope for a bright and shiny New Year,

Knowing that it was “only last year” that we had held her, kissed her,

Even changing her nappy nothing more than fond memory.

“Only a Year ago”

Here we are leaving 2013, our first year where we can no longer say

“This time last year”

Time’s way of attempting to wipe her further from our memory.

Expectations to be had that now it has been two years, an expectation that this has indeed been long enough to grieve.

Time to get over everything; move on and return to normal.

But when you can’t remember “normal” life, it is hard to return to an exact point in time.

When everything has changed but the changes can’t be physically be seen.

Do we mention our baby, now as much as we did in 2013?

Because it was after all “only last year.”

Creeping into 2014 when part of you remains in 2012, does our “Bereaved Parent” title get stripped?

Hearts that were for a short while allowed to be ripped wide open for all to see, ensuring her memory be kept alive through grief; now need to be lightly held together by tape and glue.

Because the real world deems you fit to move on.

A widow doesn’t get stripped of her title,

Even 20 years down the line she can still be deemed a widow.

Children who lose a parent aren’t expected to replace them, to move on too quickly.

But a lot child, a lost future, even a lost past has a timescale.

Nothing set in stone but obvious cracks in questions.

The forgotten children.

Moving into 2014 away from our month old daughter leaves me to think

How much further can I bring her with me openly?

Or will she gradually become more and more my elephant in the room

Invisible to all apart from me.

Forever locked inside 2012.

Julz: A Waddling Bump to Wading in Treacle

Two years, seems a life time ago.

It shouldn’t be it’s only

Two years….

Two years ago this Christmas, I had a teeny, tiny bump

Not quite 20 weeks.

Excitement knowing that a year from then we would have a 7 month old.

Signing Christmas cards

Love from bump and us,

A year from then we’d have an extra name.

It is acceptable to add plus bump,

Of course it is, it is a happy magical time bump is part of the family,

We didn’t know the gender, we weren’t even 20 weeks

Yet we could put

“Love from bump”.

Then bump turns into a very early baby.

We now have a name to put in the card,

An extra kiss, an extra smile joining in with the festivities.

We just have to sit back and wait for the months to pass,

As Christmas would be the next “big thing”

Only for you it never came,

You died.

You never saw Christmas.

The Christmas cards arrive

“To us”

“We’re thinking of you”

Some thought a little remembrance.

The sender is unsure of what to write.

The second Christmas,

The second one without you another reminder that

This year we should have had a toddler,

Yet the cards are empty from your name.

You did exist,

I’m sure you did,

I know you do

But why are you left out.

You’re still in my heart

But not in a card,

It’s not fair.

Your little sister is here, and people assume

That now we’re ok.

Christmas is now complete.

But we will always have an empty space,

Wishes are all we have;

What if’s and broken dreams.

We miss you now if not more than ever.

I wish I wasn’t wading through treacle.