January 10th is Clara’s Lifeday. It’s like a birthday, except we’re not celebrating her birth (oh no, that’s too normal), we’re celebrating LIFE. For on this day, Clara was given a chance at life.
Today, a year ago, was the day we talked (very VERY briefly, ie we shut that conversation down) about palliative care. The same day she was operated on, for the second time, to determine life or death.
January 10th, 2018
If Clara’s 25cm of iffy bowel is viable, she’s viable. If it’s not, then her time with us is near its end.
If you’re not familiar with the story, you can read how the day started here: https://claraandthegutcracker.com/2018/01/10/a-fighting-spirit/
And you can read the outcome of this life saving operation here: https://claraandthegutcracker.com/2018/01/11/a-medical-miracle/
The day was a blur. The decision was made in the morning to take Clara to the operating theater for the operation that would determine if she was ‘viable’. The waiting itself was a blur. I stared at a medical bin for a very long time. I heard Ali talking, but wasn’t able to listen. We were sat in Bay 1 but there was no incubator there. She was in someone else’s hands now. All I could do was hope and pray she’d come back to me.
When we got the call to say the operation had finished everything zapped into focus. Sounds, smells, sights. Bang. All at once. Ali, dear wonderful Ali, asked if we’d like to go with her to collect Clara. It meant a long walk across the hospital, down staff corridors. It was pitch black outside but the lights were bright, oh so bright, with artificial yellow lighting bouncing off cream coloured walls.
10th January, 2018
We got to the doors of the theatre corridor and we waited outside. I was unable to stand still. Pacing up and down, up and down, I clutched Clara’s pink blanket in one hand, my head in the other. The next thing I know, Dean barks “Acacia!” and spins me round to face the operating theatre corridor doors. There, behind the glass, was Clara’s nurse Ali shaking two thumb up in excitement with a huge smile on her face. At that moment I knew we’d be okay.
So whilst today is a day for remembering what happened a year ago, it isn’t a day to dwell on the details. It’s a day to celebrate life. And love. And faith. And trust. And the NHS.
We trusted Clara’s surgeon, her incredible nurse Ali, and most of all we trusted Clara. A little girl we barely knew, had barely held, but was someone whom we had all the faith in in the world. Clara is on this earth for a purpose – she’s fought for her place and she’s here to stay.
In addition, a year ago today, this blog began. (Edit: it wasn’t until I published this post that I realised I’ve now shared exactly 100 blog posts). One year, 100 blog posts, one very special girl.
What started as a therapeutic outlet for my thoughts has spread all over the world, with nearly 45,000 views coming from the UK alone in the last year, 7000 more coming from the rest of the world. I wanted to write to help me process all of this new information, but also to help families on a journey with elements similar to ours who, like me , couldn’t find anything relevant by searching online. Google didn’t have it, so I wrote it.
We’ve made some incredible friends through this story telling platform, and helped encourage families on their own medical journeys. The messages we receive from other families who have discovered Clara’s story and are now filled with hope make every single word I type worthwhile.
We’ve raised £8,000 to support the Neonatal Intensive Care Unit, the Children’s Hospital, and other charitable initiatives who have supported us along this journey in year one. In particular, a very big thank you to Clara’s Uncle George who kick started it all with his cycle ride from Oxford Children’s Hospital to Paris.
We have some really exciting plans for this year – keep an eye on our fundraising page here to see how you can get involved.
But in the meantime, Happy Lifeday Clara. You truly have taught us all the meaning of life.
Now make sure you do something for YOU today. Smile, treat yourself, treat someone else. Let’s make life good again, for everyone.
Clara and the Gutcracker 