Romeo had been sleeping a lot more, in fact he was only awake for an hour at most a couple of times a day. I missed him, in a weird way it was like a gradual way of his absence becoming more present. Despite this he almost had a routine of awake time, he didn’t have a lot of energy it would consist of flicking between his favourite things to watch; Luca, Moana, Cocomelon & Peppa Pig. Playing with his favourite toys. We would read his favourite books to him, laying next to his bed reading whilst he would put his hand on ours through the mesh of his bed guard. We would listen to his favourite reggae songs on the Alexa and have a dance in the kitchen. All the things he truly loved doing we did with him in those final weeks.

October 11th 2021, unbeknownst to us his last full day here. He had been suffering with a cold for the last couple of days and certainly looked a lot more blue round his lips and extremities but I wasn’t as concerned as I had been in the September as he seemed well enough in himself. It was just a normal day at home, he watched Luca and Peppa, we read books in his room, we danced in the kitchen to Alexa. I had daily calls with the community nurses and mentioned about his cold she said we could have a zoom call with the palliative care doctor if I was concerned but he seemed well enough other than a few more vomits. We decided that day to give him dioralyte instead of full feeds to keep him hydrated and to keep it down and he had a few adjustments to his meds.

We had a new water colouring mat arrive that day so in the evening when he was awake we did some drawing like we always did, we noticed the cat hanging around and paying more attention to Romeo than usual but didn’t think anything of it. Whilst drawing Romeo would pass his pen to us to have a go but this time he held it out for someone else, I even made a comment saying “there’s no one there Romeo, mummy draw?”, he shook his head and he was adamant of passing his pen to someone we couldn’t see. Now it’s a well documented phenomenon that during end of life people tend to see deceased relatives. I don’t know who he saw that night but he wasn’t scared, he wanted to share his pen and play with this person, whoever it was it was Romeo’s guardian angel and they came to lead him on his way.

The Monday before we had a new nurse on his package, she was an experienced nurse who had worked in PICU before we had been there. She was back on this Monday, she started her shift that night at 10pm and like clockwork Romeo woke up again, he always did wake up at this time probably being nosey to see who was looking after him through the night. He was extra cuddly and a bit more miserable than he had been through the day, I noticed he was a lot colder than he had been before so attempted to put socks under his baby grow but he didn’t want them on, I also noticed his breathing was a bit noisier but didn’t think too much of it as he did still have a cold. Lucia was a bit grizzly that night and normally every time he went up to his bed I would kiss him but this night with the commotion with Lucia I forgot. He waved at me from the stairs like he always did when he went to bed, I just didn’t know that would be the last time I would see it.

When I got into bed with Lucia I realised I hadn’t kissed him goodnight, normally once he was settled in bed we wouldn’t disturb him but whilst Jimmy was laying with him he realised and something made him text me to say I could come and kiss him goodnight and I’m so thankful I did. I had previously text my mum that night saying I was worried about Romeo due to the blueness and him being more cooler round the edges, I text her a lot when I was concerned about Romeo but we would always see how he is in the morning, he wasn’t as poorly as he was in September so it wasn’t an immediate concern. That was the first night in a while that I went to sleep worried about him, worried that he could deteriorate and it could be a matter of days not knowing that it could be a matter of hours.

Just before 2am I woke up to a knock on my bedroom door, I opened it and looked for the nurse in the hallway but couldn’t see her. I shut the door and got back into bed thinking I must have dreamt it, then I heard another knock. I got out of bed and went into Romeo’s room where she was observing him and his breaths, I immediately went to wake Jimmy up not knowing just how severe things were, I walked straight back into his room and he had took his last breath just as I had got through the door. I just remember Jimmy walking through the door and her saying “I’m so sorry, he’s gone”. She immediately picked him up and placed him in my arms whilst my heart completely shattered.

I remember despite the immense pain and shock I felt calmer than I thought I would be in that situation, my legs didn’t buckle beneath me, I didn’t let out that blood curdling scream I thought I would, I just kissed and cuddled him and cried. We knew this was coming eventually, it was more of a feeling of shit, it’s actually happened now and coming to the realisation that he was actually gone. I had been living with anticipatory grief for a long time before this day, maybe that had prepared me mentally; slightly, but still not enough. I don’t think there is a pain worse in the world than a parent losing their child.

After about half an hour I called my mum, I couldn’t physically say the words but she knew, I think all I could muster was the word “mum” and she came straight over. Over the next couple of hours all our immediate family came to see him and us. The out of hours doctor came round to verify his death and the nurse arranged all the admin and kept us going with cups of coffee. We played Luca on the TV for him, it was comforting to have it on in the background even though he was no longer there, it was just what we did with Romeo and felt right. I danced with him in the kitchen one last time to Bob Marley and just tried to take in every last moment with him at home. The hours that passed were slow and torturous, we were waiting for the hospice to be ready as it had always been arranged that we would take him there when this day came.

The time had come, we were ready to go. The nurse put his hat on and wrapped his blanket around him and then it came, that blood curdling scream of realisation, my baby was dead and this was the last time he would be at home. We carried him out to the car one last time, I got into the back and the nurse placed him on my lap, she gave me a hug and a kiss and sent us off on our way to the hospice. She was incredible the whole night, she held everything together in what must have been the most difficult shift and she was so compassionate; I often think of her.

Looking back all the signs we’re there, all the things I knew to look out for they were all there, maybe I just didn’t want to accept it. I always had this thought that he would die in my arms and although he took his last breath as soon as I walked into the room it kills me that I wasn’t holding him when he did. The only comfort I can take is that we were there immediately, she was by his side and he was peaceful. He went in the most peaceful way we could have ever wished for him, in his own bed at home and most importantly he didn’t suffer.

“If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever”

In loving memory of our sweet angel Romeo 🤍 05/04/19 10.37am – 12/10/21 02.00am