A little boy dies

If the walls could talk in the parents room of the intensive care unit I’m in no doubt they would share some of the most fascinating, heart-wrenching and inspiring stories of babies and children who’ve defied the odds, survived the harshest surgery and got the rarest conditions – but came out of the unit fighting.

I don’t have years of stories like this, but the things I’ve seen and heard when I’ve been in here will stay with me for the rest of my life.

Iain and I have been in and out of hospital with Rosie for many months over the last two and a half years. In the early days I can remember how hard it was to sense the feeling in the parent’s room – especially the one on the intensive care unit. A parent’s room is an open forum where you’re hearing news as it happens – good and tragic.

screen-shot-2016-10-23-at-18-31-48The parents room at The Bristol Children’s Hospital, UK

Iain and I met some amazing, brave and fascinating people in hospital – we may have only chatted for a day or two – a week at most – but we’ve been by the side of parents as they go through the raw emotions of a complete nightmare. You get to know people at the peak of their despair, you celebrate with them when they find out their child will be OK and its not been unknown to give them a hug when it’s time for them to leave the unit. The bond you make is weird, but very real.

Things changed for me when Rosie was in intensive care back in March 2015 when met two lovely families. One from Devon the other from Cornwall. They had arrived a week apart from each other in the January of that year. They were very welcoming and put Iain and I at ease. Over the four weeks we spent in ICU we grew close to both families, we laughed, cried and shared tales of times gone by. They really helped us gain perspective on our situation.

For one of these families, they finally managed to leave the hospital and head back to Cornwall. For the other family, it ended in tragedy.

Iain and I met Jemma and Craig on our first day at the intensive care unit. They were a young couple with 3 children. Their eldest Corey was 5 years old and had been diagnosed with a congenital heart condition at seven months. He’d been in the hospital after undergoing his 8th open heart surgery.

When we first met them, Corey was recovering well and Rosie at one point was in the bed next to him. Just two weeks later his condition started to rapidly deteriorate and doctors told the family that Corey didn’t have long to live, there had been complications.

Somehow, Jemma and Craig found the strength within them to arrange a Christening for Corey and two days later their own wedding both within a few days. I can only begin to imagine the confusion in their minds – a happy wedding day tarred with the possibility their eldest son was going to die.

screen-shot-2016-10-23-at-18-34-58On their wedding day: Jemma, Craig and their beautiful children

We were honoured to be invited to their wedding next to the bedside of Corey. It was the first of its kind which subsequently made history and the national news. It was amazing. Family, friends, staff, other parents (including us) and their extended families (including ours!) rallied round to help them prepare for their big day. It was so special and very emotional. Everyone was in high spirits.

Five days later, brave little Corey died. It was the last time we saw Jemma and Craig. We didn’t get the chance to say goodbye. We know he died peacefully with Jemma and Craig by his side.

I’ve not stopped thinking about him since even a year and a half later. For a split second we had been there too when Rosie died outside the doors of the hospital that frightful night in March 2015. We were lucky, someone was watching over us that night and we still get the chance to love and hold her tight day and night.

But what do you do when your child dies? This thought for me is still incomprehensible, despite all we’ve gone through. My heart pours out to Jemma and Craig and their family for what they experienced and how that will effect the rest of their lives.

screen-shot-2016-10-23-at-18-38-02Brave little Corey x

We were privileged to have met Corey albeit for a short time at the end of his short journey on this earth. He is now being looked after by the angels. What a brave little boy he was. Meeting Corey, Jemma, Craig and their lovely family changed us as a family. We’ve never been so close to anything like it before.

For Jemma and Craig we know there will always be a huge hole missing in their lives and life will never the same again for them again. Life can be cruel just as it can kind. When life is kind – share it with people who need it – there’s always someone. When life is cruel – know there is always someone wanting to share love and kindness with you – go and find it, it’s waiting for you.

To Jemma, Craig and family. You will always be in our thoughts. Our paths may never cross again, but your story has touched our souls forever. Your family filled us with courage and strength at a time we needed it most. You’ve taught us many valuable things and we thank you from the bottom of our hearts.

Rest in peace Corey. May the angels take good care of you. Lots of love x x x

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