This is for the babies who did not make it home from the neonatal unit.
The babies who fought with every scrap of their tiny being.
The babies who showed the grown ups what real strength and courage is like.
The babies who fought and fought until they could fight no more.
The babies who live on in our hearts and our minds, rather than in our arms.
The babies who do not get to play, go to the park, the seaside, to school.
The babies who do not get to grow up.
They are precious, every one.
They will never be forgotten.
This is for their mummies and daddies.
We lived in such hope.
Hope that our baby would defy the odds.
That we would be the lucky ones to be taking our baby home.
That our baby’s incredible story of survival against all the odds would one day adorn the unit’s wall.
We spent so many hours holding vigil next to our baby’s incubator.
Reading, singing, telling them about everything we had to look forward to doing together.
Learning all the cares, fingers and thumbs with the nappy change.
Helping with the feeds.
Looking forward to the cuddles, making do with comfort holds.
Leaving reluctantly every night.
The exhaustion had long ago sunk deep in to your muscles, your bones –
As if you would never again not feel tired.
But you know you must rest, to fight another day for your baby.
Saying goodnight, wondering if that would be the last time you would see them.
Telling them to behave for the nurses.
Going to sleep with the sound of the alarms ringing in your ears. The good alarms as well as the bad.
Sleeping with one ear alert, in case the phone should ring.
Sleeping poised to jump out of bed in case you were needed.
Trying to get your head around complex medical terms – complicated by your sleep-deprived foggy brain.
Getting through one crisis, and hoping there will not be another.
That your baby will avoid infection, further problems, to grow, get bigger, stronger.
Thinking, hoping, praying, just like all the other parents that this will all be worth it because you will take your baby home.
This will be an amazing story to marvel over when your baby is bigger.
But the news gets worse.
The doctors are running out of options.
You begin to avoid them, because you know they will have news you do not want to hear.
You get called in to the special room.
You hear the news no parent ever wants to hear.
You will never be taking your baby home.
You have to make decisions no parent ever wants to make.
You have to be a good parent to your baby.
You tell them how much you love them as they breathe their last.
You have to say goodbye.
You have to leave your baby behind.
Your heart is broken.
You do not take your baby home.
You are filled with ‘what ifs’.
You torment yourself with wondering whether you made the right decision.
You wonder what would have happened if only there was more time.
The beeps from those bloody alarms reverberate around your head.
You did not know it was possible to feel such pain, such sorrow, such emptiness.
All your hope has gone.
All you have are memories, photographs, videos.
Treasured, every one.
But they will never be enough.
They are no substitute for taking your baby home.
But they have to be enough.
They remind you of how beautiful your baby was.
Of the special moments.
You know you would do it all again.
Because it means you could see your precious baby again.
But you wish there could be a director’s cut to this remake of the story.
We don’t like the ending to the original story.
We want a different ending.
A happy ending.
One that makes us cry with joy instead of sorrow.
But life is not a film. Life is not Hollywood.
Life can be cruel, life can be heartless.
Life can take our much-loved, much-loved babies away from us.
But you also know that life is fragile, life is precious, life is beautiful.
You know that nothing in life is guaranteed.
We are irrevocably changed.
We celebrate our babies’ short lives. We makes sure they are always remembered, never forgotten.
We try to make the best of our lives.
We do our best to honour the life so cruelly denied to our babies.
It is the least we can do for them after they fought so hard.
After they showed us what true love means.