When Bailey died we realised that we had lost a unique little boy. Even the medical staff, who had worked with him and fought so hard to keep him with us, remarked that he was a very special little boy, the like of which they just don't see.

Michelle and I wanted to do something for Bailey which would reflect his uniqueness, and so were unable to settle for an ordinary headstone, which would make his grave indistinguishable from that of an adult from any distance. We wanted to mark his grave with a stone that would stand out among those around it. After some searching of websites and travelling round various monumental sculptors local to us we found the stone we wanted, and a stone which satisfied the criteria we had set for ourselves. We knew that this would be one of our last chances to do something lasting for our son and with this in mind we made sure that we got this right. The stone we chose is a black granite, polished to a high shine, the field for the legend being oval. To the left side is a bear, standing and peeping around the stone at top left, with his front paws holding the stone to the top and left of the stone. The bear is roughly cut from the same piece of stone and the roughness of the cutting gives the impression of grey fur, contrasting well with the main body of the stone. The bear has polished eyes and nose. When we ordered the headstone we were told that it would have to be imported from quarries in either China or India, dependant on the colour of stone we chose, and that this distance would factor in a significant time delay between the order and the erection of the finished memorial. We weren't to be shaken though because we had set our hearts on this particular stone and because we knew that there would be months before the stone was ready we would just have to be patient, because the end result would make up for any waiting time. Our monumental mason has now erected Bailey's headstone on the grave. Michelle visited the grave yesterday in the early afternoon, and was bitterly disappointed to find that no work had been started after earlier promises that the memorial would be in place that day. In the evening we took part in a quiz in the village's church hall and this ended around 9:30 pm. In the darkness and coastal dampness of the night we decided to visit the grave once more to check that there had been no further movement, before we wrote to complain to the mason today. Even the beginning of the foundation for the headstone would have placated us and made us be patient once more. Pulling into the cemetery in the pitch darkness, with only our headlights to illuminate the graveyard we struggled to see our boy's plot. I stopped the car and got out and then I could see a shape above where the grave is. I was stunned to make out the shape of the bears ears as the bear clings to the side of the stone. I called to Michelle and Courtney that the stone was up and looked (in the dark) finished. After peering through the dakness at the stone, with only the light from our mobile phones to see by, I returned to the car and brought it round so that the headlights would light it up and let us see. We stood in amazement as we looked for the first time at the stone we had waited for so long to see that would mark the grave of our dear, unique and brave son. Naturally, there were tears, but as well as the tears being full of grief, there was also a healthy mixture of pride in knowing that we had done the right thing to wait for something very special for our boy, and also much relief that the wait was over. Michelle called her sister and a couple of good friends to let them know that the headstone was in place, and within a short time there was a little crowd at Bailey's grave side. As we stood in the darkness admiring the headstone, Michelle, Courtney, and I, each saw a shooting star racing across the sky. Three shooting stars within a period of five minutes or so! We returned to the cemetery this morning get a better view in the daylight and to us the stone is perfect, exactly what we wanted. We now have our son's uniqueness mirrored in the stone which marks his grave.

I would if I could

I can still feel the heat that filled the room,

And still smell the soap I scrubbed with,

I would still react if I heard "X-ray please

And still perch on that stool.

I can still hear the machine pumping away,

And still read the dials and displays,

I can still hear alarms and buzzing lights,

And still see the monitored pulse.

I would still help to soothe my kicking boy

And still staunch the blood from his heel.

I would still comfort my raging son

And still rub his crumpled brow.

I would still drink the water and read from a book,

And still will my boy to survive,

I could still make the phone call in the dead of night

And still speak of doctors with praise.

I would help with his nappy, or washing him down,

And I'd help while they put in new lines,

I would sing to him when we were alone,

And he would ignore me again.

I can still see him refusing to look until the light was dim,

And I'd catch him slyly sneaking a peek,

I would tell him that his dad was here, and how I'd always stay,

And he'd raise his eyebrow to agree.

I could get from the car park to ICU without having to open my eyes,

And buzz at the door to be let in, in my half conscious haze,

I could smile as they greet me and usher me in,

To my boy in his perspex house.

But my boy is not there, and I visit no more,

But I would 'til I ended my days,

My son was a big man, courageous and bold,

A winner, up 'til the end.

So now we must mourn you, for all of our days,

And wonder what might have been,

Our son, so tiny, yet so full of life,

Inspiring to all he had seen.

Written by Bailey's daddy, Nigel.

What sort of man would my son grow to be?

What sort of man would my son grow to be?

The image of his mum, or would he imitate me?

On the journey he’d take from baby to man,

What changes would he go through in that span?

Would he skin his knees and get a fat lip?

Would he climb tall trees or fall from a trip?

Would he sink like a stone, or swim like a fish?

To see my boy grow is all that I wished.

Like every dad I’m proud of my son,

There was no other like him, not even one,

He was as hard as nails and fought like a bear,

And it’s hard to believe that he’s no longer there.

My son is my hero; he fought tooth and nail,

But as the end came he just was too frail,

Though his life was short, it achieved huge things,

But his death still hurts and his absence still stings.

Written by Nigel, Bailey's daddy.

The following is a poem written by Lou Miller, mummy of Amy. I read Amy's story on SANDS and could relate to the pain and grief felt by her parents. Lou had problems during labour that went undetected and as a result Amy's brain was starved of oxegyn, leaving her very ill. Amy died a month later leaving her mummy and daddy to live that 'new kind of normal' that so many of us now know so well.

I hope Amy and Bailey are now good friends in heaven and I know that they look out for us. Always!

Dear Mum

When the light went from my life

You were submerged in darkness and pain

Simple tasks are impossible to do

You wonder if it’s ever worth breathing again.

But be strong for me

Don’t be consumed

By the anger, guilt, and loss.

Cherish the life that you still have

And know that I love you lots

Difficult decisions you had to make

But the outcome was already clear

Selfish sustinence of my life Would not benefit me here

Even though you did everything right

To protect your unborn child

The moment life started,

Things went wrong

I’d been waiting to meet you

For far too long

Yet you kill yourself with “what ifs”

Maybe I could have been the one

Who’d miraculously survive

Despite the damage done

A life of care and no awareness

Is not much life at all

No words,

No thought,

Survive not live

Is what you saved me from

So remember now Mummy,

When you’re crying out your heart

There was no chance that I could stay

From the moment my life did start

Don’t worry Mummy, I know your heart is true,

That you loved me deeply,

Just as I love you.

When you are feeling desolate

For the life that has been lost

Remember I’m here waiting for you

When it’s time our paths will cross

Have no fear about me now

For I am cured and safe from harm

Even though it’s in your arms I long to be

I am happy and waiting here for thee

And if the time comes

And you are blessed

With another child in your life.

Feel free to love them as you would’ve done

If I’d been there by your side.

I won’t feel betrayed, forgotten, replaced

As long as I’m remembered

‘Cause in your heart there’s lots of space

For many family members

So speak my name and talk of me,

in polite company

And when people ask “How many?”

Add one on for me

For ‘though I’m lost, I’m always yours

And you are still my Mum

And this love is felt between us,

Even though I am now gone

Live your life as best you can

And have no fear or guilt.

Try to live the dreams you have

and grab hold of the life you’ve built.

Remember me often,

But don’t let me rule your world

I know you gave your all for me,

And would change things if you could.

I am not gone forever,

In time we will re-unite.

But for now I’ll settle for watching you sleep

And kissing your head goodnight.

I was talking to a lady the other day who had lost her husband. We were talking about how difficult it is to deal with our grief when she asked me, "do you talk about Bailey much"? My answer was immediate but as soon as I said it, it startled me. You see my answer was the truth but I hadn't really said it out loud before, thus 'making it real'.

I looked at her and I said "No I don't, because people don't want to talk about him".

I had a beautiful baby boy and my heart is filled with so much pride for him and yet I can't really share it with people.

I would give anything for someone to come to me and say " Tell me about Bailey, did he have hair, who did he look like?" But they never do. You see people are so busy trying not to hurt me that they inevitably do just that. They think by not 'talking about it' that it's better for you, but it's not. I will cry when I talk about Bailey but I cry anyway, every single day.

Please take the time to read 'The bereaved parents wish list' on page 4 of the journal and please if you meet me don't be afraid to talk about Bailey. It really is my favourite subject and if you'd have known him you would fully understand. Bailey has gone to be an angel now but he is still a huge part of my life. That will never change. Nor would I want it to.