Just a little warning. This post deals with death and describes death. It might upset you.I feel very strongly that death shouldn’t be as taboo as it is, we should talk about it. Not in a morbid way but it is, unfortunately, a part of life. Writing this post was really difficult for me but I really needed to do it, I needed to put it in words. I am sure that some people might think that it is something that I should keep to myself but Eilys’ death was part of her story and I don’t want to forget any of it nor do I want to ignore it.
The day Eilys died started like any other. She woke up, made her lovely snuffly whingey “come and get me” noises. I got out of our bed and gave her a cuddle. I popped her into our bed in between me and Joe and I did some respiratory physio on her and a little bit of suction. She had had a rough few days but I think me and Joe were both pretending that she was better than she actually was. She seemed happier so I snuggled in next to her. She smiled at me and gently tapped me on my face with her little fists. After a while she started trying to hit Joe so I turned her onto her other side so she could reach him a little better. I think we must have all drifted off to sleep for a bit as she’d first woken up at about 5.25am and the next time I looked at my phone it was about 8:45. I sent a few messages to a friend and a few to my brother. Dylan then came bounding into the room and Eilys woke up again.
After a few minutes it became clear that she was struggling so Joe started to do some more physio on her. After a few minutes she wasn’t improving and her blood oxygen levels started to dramatically drop (“normal” is 94+, Eilys’ normal was 86+ and she kept dipping to 40). I ran downstairs to the oxygen compressor machine that was connected to her oxygen mask and turned both machines up to full and then raced back upstairs. Joe was still doing physio on her and I started doing some oral suction. After a few more minutes of no improvement I knew that this was it, we weren’t going to bring her back so I turned to Joe through tears and said “We have to stop. I think this might be it”. He knew too. So we stopped intervening and just held her together and told her over and over that we loved her as she slipped away. She looked so calm and not at all distressed. She was so peaceful. Dylan was there the whole time and he hugged her too.
In about 15 minutes she went from asleep and fine (well, obviously not really fine) to dead. It was so so fast. There was no time to panic, no time to think about what was happening, it just happened. You might be reading this thinking “why didn’t you try harder, keep going with the physio and suction or just call someone”. To that I’d say that after turning the oxygen up and it still not helping there wasn’t much else we could do. Her oxygen levels were so low that damage would have been done. Continuing the physio and suction at that stage was a bit cruel. And also I wanted to be cuddling her as she went. I wanted her to be in our arms.
I removed the posey holding the saturation monitor from her little foot and I took the oxygen mask off her face, as she always hated having it on. We just held her. We passed her to each other. We hugged. We cried. And we had to explain what had happened to Dylan. He wanted to know why we were so sad and why we were crying. We had no time to think about what we were saying. Between us we just explained that due to Eilys being so poorly that her body had just stopped working and that she’d died. For Eilys’ birthday we’d bought her some tropical fish and one of them had died so he instantly made the link. “Eilys died like the fish?” and then he bumbled off to “clean the bath”.
Joe and I were just in shock. I turned the oxygen compressor off and then it was far too quiet in the house (it was a constant loud hum). We lay her on our bed and one of us stayed with her while the other one watched Dylan. I called our Mum’s and I think I called my brother too. Telling people was the worst. Hearing people’s hearts break is a horrible thing to have to hear. I then called the Doctor’s to ask them to come and certify her death. I dressed Eilys in the dress that I made for her, it seemed fitting. I then covered her in a blanket that our friend knitted for her because I didn’t want her to be cold. She just looked like she was sleeping. So peaceful.
Eilys dying weighed on my mind a lot after we got her terminal diagnosis. I played out so many scenarios in my head. I worried about it, not often but I did. I was afraid of it really. Death isn’t something that people talk about, it isn’t something that we are prepared for. Even though me and Joe knew that this would be the outcome we hadn’t really asked about it. We had discussed at length the medical side of things, we had written an end of life plan but we had never talk about the actual dying bit. I suppose there isn’t anyway to prepare for that. Neither of us had ever seen a dead body and I think we were both to afraid to ask.
Like I said, I had been concerned. I played out a lot of ways of how it might happen in my head but in actuality Eilys’ death was kind of perfect, which is a really weird thing to say. It was peaceful, we were all together and most of all she wasn’t distressed. Yes, losing our wonderful, happy, loved little girl was terrible, so sad and so excruciatingly painful but her death was quite beautiful. In all the scenarios I had thought up, it was horrendous and scary and upsetting. I think Joe and I have taken a lot of comfort that she just slipped away, surrounded by us and that we were able to say goodbye to her. Of course we would have always liked more time with her, more time to do more things, more time to show her how much she meant to us, one more hug and one more kiss but all that was for us, not for her. We didn’t want her to suffer and we didn’t want to force her to continue any longer than her body could naturally cope with, it wouldn’t have been fair on her. She died peacefully, after a restful couple of hours being cuddled, she was surrounded by the people she loved the most. It was the best we could have hoped.
I can’t remember when people turned up to the house but my parents, Joe’s parents and my brother and sister-in-law all came over. Eilys stayed in our room and one of us was always with her. We mourned as a family. Unfortunately, at the time but a little bit amusing with hindsight, Dylan greeted everyone at the door by saying some variation of “the fish died last week and Eilys died today”. Every time he said it, it physically hurt but it also meant that there was no pretending that everything was ok. It really helped me come to terms with what had happened. There was no hiding from it.
The Doctor, a locum, came round to certify Eilys’ death. I only mention that she was a locum because she actually totally fucked up the certification of Eilys’ death and as a result we were unable to register her death at the appointment that we made the day after she died. It wasn’t really the Docs fault, she didn’t know that Cheshire has a weird rule that all deaths of children have to be referred to the Coroner even if it wasn’t suspicious… I don’t really remember the ins and outs. Anyway, she came round. The Doctor was really lovely and gave us advice about a good local Funeral Director and I am so glad that she did as the ones that she recommended were absolutely brilliant, so caring and so kind.
We agreed that the Funeral directors would come and collect Eilys at about 6pm. During the afternoon I carefully did some hand and foot prints and some hand and foot casts. We’d attempted to do this a few times while Eilys was alive but she very much protested. I am so thankful that we had the chance to do this as they are beautiful.
We had the whole day with her and everyone had the chance to say a proper goodbye to her. I was worried that it would freak me out to have a dead body in the house, or to be near her after she died but it was still her and it didn’t feel weird or wrong at all. Like I said, she just looked like she was sleeping. She looked like her but her colouring was slightly wrong and she wasn’t snuffling, but otherwise she was just her.
The Funeral Director came to the house with his wife to collect her. They were so gentle with us and so lovely with her. They asked what we wanted to be kept with her. They took her in their car with the Funeral Directors wife carrying her which I thought was a lovely touch, they were so personal and treated us all with a lot of respect. As a side note, we went to visit Eilys at the Funeral Home a few days later so that Joe’s sister could see her and say goodbye and they had bought her some presents and things to keep her company like teddies and books which made me smile.
Watching her leave the house for the last time broke my heart in a way that I can’t fully explain. It was so final. A proper full stop. Heartbreaking. I needed time alone after she had gone mainly because it was taking everything I had not to run to the Funeral Home and get her back. The house was too quiet and I felt like I had nothing to do. We didn’t have any feeds to prepare, we didn’t have any physio to do and there was no snuffly little lady to make us smile. Everything felt so wrong like the core of our family had been removed. We all needed to readjust to life without her. To life as a 3 instead of a 4. To life as a grieving family.
And that is where I’ll end this.
Thanks for reading