Day 20: Take a picture of something you never want to forget

Today wasn’t a sharing day, this is one of the activities based on my story, this year I’m only writing about my friends. I reached out to Jayne about sharing her story and she luckily said yes, but it was when the calendar was already published, so I couldn’t add an activity tailored to her. So it came down to me to take one of my days that I felt suited best for her and her son Rory. Today is the day! 

Jayne and Reg were there the first time Pierre and I went to a Sands support group. She spoke with so much love and composure and they both had (and have) this energy of elevated humans, like they are just from a different realm. It’s been almost six years since that day we met, and I can honestly say that there is not a day that goes by when I don’t think of Jayne. I once saw a picture of Rory and I’ll never forget just how perfect he looked, his super cute nose and the love and pride Jayne had when she showed us that picture. I wish I could’ve taken a picture of her so she too could feel and see what we all did that day and every other day when we are with her.

This is Rory’s story, written by his mum:

We found out we were expecting Rory Cupcake in September 2015. He was our third baby – we’d had two first trimester miscarriages and we had a difficult first trimester with him too. We thought we were losing him in week 7 but, despite heavy bleeding, there was a strong heartbeat at each weekly scan. At our 12 week scan all his measurements were on track, the bleeding had started to subside and we began to believe that maybe things would be OK. It took a little while to trust in that but eventually we were able to joyously embrace the pregnancy. 

Then… at our 20 week scan the sonographer told us that our little Cupcake’s heart didn’t look like it was developing properly. We had a series of scans and appointments with fetal cardiologists and Rory was diagnosed with a congenital heart defect: pulmonary atresia (which means his pulmonary artery had not developed) with a ventricular septal defect. To say it was overwhelming is the most understated way of describing our emotions. We had a meeting with a consultant who mentioned that termination was legal until 24 weeks. I don’t have the language to describe that moment - I just stared at him as the bottom fell out of my world. All along people (and I mean medical professionals) had been saying they can work miracles these days, etc. but in that moment the penny dropped, and shock and disbelief kicked in at what the three of us were facing. However, we were assured by the cardiologist that Rory’s heart condition was survivable with surgery a few days after birth and then again later in childhood. It was stressful and traumatic but we built a plan for Rory’s delivery with the most wonderful specialist midwifery team supporting us, as well as family and friends, and we tried to remain hopeful and excited. 

Then… at our 28 week growth scan more problems were diagnosed and we were told that Rory was unlikely to make it to term, that if he did he was unlikely to survive, and if by some miracle he did survive he wouldn’t be strong enough for the open heart surgery. So whichever way things played out, tragedy lay ahead. 

Things like this don’t happen to you. They happen to other people. But now all of a sudden, we were those other people. 

We had a meeting with a neo-natal consultant scheduled for 9th March with a view to thinking about options regarding terminating/continuing. But Rory had other plans and spared us having to make the decision. In the early hours of 6th March, we found out that our little Cupcake had fallen asleep forever. In 2016 6th March was Mother’s Day... Rory was born 48 hours later at 2.55am on Tuesday 8th March 2016. With me in the softly lit room were his Dad and our midwife as he delivered himself gently and silently. In that moment I became a Mummy to the most beautiful boy with a cute little button nose, ruby red lips, long slender fingers like his Dad and the most gorgeous feet.  Rory had ten fingers and ten toes but we would later find out that inside all the wiring had gone wrong. He had several other congenital defects that aren’t visible on scans so, despite his courage and his fight, he had no chance of survival. We were told that all the bleeding in weeks 7-11 would have been when things went wrong – so the whole time we were desperately clinging on to hope and were overjoyed every time the heartbeat was still there was exactly when his fate was being sealed. I can’t allow myself to get too caught up in that because it is just too difficult to bear. 

The loss of him and our grief for him are overwhelming – but so is our love. Life delivered us the most unimaginable tragedy.  But in that same moment life also gave us the most precious gift – our son.  And our darling boy gave us a beautiful gift – parenthood.  What a privilege. 

We will love you and miss you forever our little Cupcake xxx <3