Explaining the unexplainable

Dylan is 4 years old as I write this. A big part of me can’t believe that he is 4 already but at the same time it feels as if he has been with us forever as well. Like most Mummies, I am super proud of the little guy and I think that he is amazing. He is cheeky, intelligent, interested and he sees the world in a really beautiful way. It breaks my heart that he has had to deal with illness and death at his age but deal with it is exactly what he has done. I hope…

After we had Eilys’ diagnosis one of the things that played on our minds was how would we explain it all to Dylan. We asked everyone. Our families, our friends, Eilys’ consultant, her nurses, the counsellors from the children’s hospice and the lovely folk from ACT for SMA were all asked and asked and asked. We got lots of advice but the main advice was just tell him a softened version of the truth, don’t lie to him and he’ll accept whatever we tell him because of his age. As adults, I think it is sometimes difficult to remember what it is like to think and feel as a child. We bring our own experiences and fears into things but this isn’t how children think at all. They rely on adults, especially their parents, to provide them with the truth and so they mostly just believe what you are telling them.

We explained to Dylan that Eilys’ muscles didn’t work very well and that they would get worse and that she was very special so we had to be extra gentle with her. To start with it was easier because there wasn’t change to her day to day care but as the Spinal Muscular Atrophy worsened or progressed she needed more physio, she needed suction, she needed oxygen, she needed to have apnea monitors attached to her sometimes, she needed us to check her blood oxygen levels, she needed a nebuliser and she needed a nasal-gastric tube for her feeds. Dylan was brilliant. He was so helpful with Eilys’ care. Somedays he helped us with physio or with the suction, he would help us prep her feeds and test to make sure that her NG tube was in her stomach or he would entertain her while we did all those things. He took it all in his stride and he just loved being helpful. It made me feel so guilty and sad that he knew words and phrases like physio, cathater, suction and spinal muscular atrophy but he made me so proud. He wouldn’t get grumpy that Eilys couldn’t do things, he just accepted it and loved her regardless. He would occasionally get annoyed that we were preoccupied with Eilys but this was very few and far between.


We tried to encourage questions and we would always try to answer truthfully. We took him to Leighton Hospital when Eilys had broncioloitis so that he knew where we all were and that it wasn’t a scary place. We took him to Alder Hey for the same reason and had him meet Eilys’ Consultant and Physio’s there. We took him with us to the hospice which was a wonderful experience everytime we went as we got to use the hydrotherapy pool together as a family and the whole place was like a massive playground/playroom/softplay with hardly anyone playing there so Dylan just had a great time. Dylan was always so caring towards Eilys, he really really loved her. He would say to her all the time “my love you tittle girl” and give her a big squeeze and he had a nickname for her, Eilysie-Booosh. He would sing her songs and get toys for her to play with. He really was the best big brother a “tittle girl” could ever ask for.

We tried to stay truthful with him at all times but I don’t think either of us dared to bring up Eilys dying. We both knew that was going to be the outcome but vocalising it and having to explain it to Dylan would have been too painful for us. Maybe that was a failing of ours but how do you explain dying when you have never experienced it like we were going to. As I have said in a previous post, Eilys’ died with us all around her and this meant that we had to explain to Dylan what had happened pretty quickly. We told him that she had died and that she would turn into a star. And like we were told he would, he just accepted what we’d said. We kept her in our room for most of the day and he spent a lot of the day with her and gave her a few kisses and cuddles and we asked if he wanted to say goodbye to her, which he did which was heartbreaking. When it came for the Undertaker to take Eilys away we explained to Dylan that we would be preparing Eilys so that she could turn into a star, I know this is a lie but it is a beautiful lie. When it came to the time for her funeral we told Dylan that Eilys would be in a box [coffin] and that would help her to become a star, again a bit of a lie but how else would we explain it. Telling him that Eilys was a star worked really well but as it was summer time the stars were never out when it was Dylan’s bedtime and he was desperate to see Eilys’ star. For a weeks, he would look out of his window and say goodnight to Eilys and say that he loved her.

Dylan accepted that Eilys had died. He didn’t ever ask if he was coming back which I am not sure whether that is a good or a bad thing. He did have a lot of things going on in his head about her dying and would ask us both a lot of questions. We tried to answer as best we could. He liked to have some of Eilys’ things around him, her teddy in bed with him or he would play with some of her toys and he loves being in her old room, “the sensory room”. We talk about Eilys all the time and if we are sad we don’t hide it from Dylan, neither of us want him to think that grief is something you hide. Whenever we see a rainbow or a butterfly we say it’s Eilys saying hello and we like to look for her star at nighttime.

Dylan at Eilys’ funeral holding one of the butterflies we released

Recently Dylan has been talking about death and dying quite a lot which is so hard to hear as a parent. He gets worried about it. He is worried that he is going to die soon or that the “new baby” will die or be poorly. We have explained that the new baby has been tested and that he doesn’t have the same thing that Eilys had so hopefully all will be well but again, we don’t want to lie to him and we are only too aware that sometimes bad things happen! Luckily these are fleeting thoughts, I hope, and after a little bit of talking through and a cuddle or 2 he seems to be better. We always tell him that it is alright for him to tell us how he is feeling and that feeling sad or angry is ok. Dylan has also been asking questions about the last few months of Eilys’ life. As the level of care she needed increased and the amount of bad turns she had increased myself and Joe got more and more exhausted. Both sets of parents offered to have Dylan for a weekend here and there to take some of the pressure off us. In the past few weeks Dylan has asked about this a few times and once he got really upset with us both that we had sent him away because he wanted to stay with Eilys. Oh my god, the guilt of this was awful. It was utterly devastating how upset he was. I felt bad about it anyway but at the time, there really was no other way. We needed a break and Dylan needed the attention and at that time, we couldn’t give it to him. We have said sorry to him and I tried to remind him of all the lovely things that we did do with Eilys and told him, very honestly, that those weekend she wasn’t at her best and that we wouldn’t have been able to have much fun even if he had been there. I think this left both me and Joe so heartbroken.

I think both myself and Joe realise that Dylan will probably have a lot of questions and difficulties getting his head around what has happened as he gets older but I hope that by us being open and honest with him, he’ll feel that he is ok to talk to us openly and tell us how he is feeling. We know that grief is something that will keep rearing it’s head and I really hope that we can deal with this as a family. Together.

Thanks for reading


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