There’s never a good time to grieve but coping with the loss of a loved one has been made all the more cruel since the arrival of Covid 19 on our shores, by the pandemic restrictions in place and the inability to seek solace amongst friends and families in the traditional ways we previously took for granted.
Geraldine Renton, mother of three and author of the book Ethan and me , has had to cope with the unbearable situation twice in recent months – losing her brother Liam to cancer in March, 2020, and then later that same year when the unthinkable happened and her eldest son Ethan passed away last September.
“Ethan was diagnosed in 2008 with a rare genetic, life-limiting syndrome called Hunter syndrome,” Geraldine explains.
“When they first told us that, I didn’t really take them seriously. I heard them but I thought, ‘sure they can’t be right’. They were telling us that, eventually, Ethan would lose the ability to walk, talk and eat and he’d be nothing more than a shell of himself. They were not even sure if he’d be able to see or hear and then it would take his life.
“I suppose I didn’t think it would happen. I knew it would on some level, but I didn’t keep really visiting it I just went ‘okay, what they’ve told me, is what they’ve told me’ but I was looking at a kid who was being an airplane at the time and jumping off couches going ‘mam look at me, look at me’.
“But, as the years went on, slowly he was beginning to lose the abilities that he had. It started with speech. It started with words and then it became balance. Then it became food and then everything. People compare it to Alzheimer’s. It’s very much like Alzheimer’s except he never got to live the full life to have the memories and all that.
“I remember it vividly, the 13th of March when the message came through on my phone telling me that the schools were closing”, Geraldine says.
“I was sitting in the hospice with my brother and he laughed, I remember him laughing because of my face. At that point we didn’t really know how serious Covid was, but when that message came through on the 13th we knew it was serious because they were closing the schools.
“Ethan was due to finish up school and move to adult services. Luckily, I had a place for Ethan, I was happy with that, but it also meant that Ethan wasn’t going to get the handover and transition.”
With the schools closed and Geraldine’s brother Liam told that he hadn’t long left to live, Geraldine could only get to visit her brother in the evening “when Ethan was in bed”.
Liam passed away on March 22nd.
Close family
“I rang the centre and I begged them to take Ethan so I could attend my brother’s funeral,” Geraldine says. “There was only close family at it, and no kids allowed. They were very good to me. They opened the centre and they took Ethan.
“When all that settled, everybody was locked at home and I didn’t see any of my family. It was just us and I begged for them to take Ethan because Ethan was not doing well at home and I wasn’t able to do the exercises that he had been doing because it always takes two people to mind Ethan and I didn’t have the two people.
“Jack [Geraldine’s second son] was doing his Junior Cert so he was a bit anxious about that. Then I’d my smallest lad Daniel running around the place thinking everything was great, building lego in the most awkward space and not really understanding that I needed the ground clear because I was supposed to do all the exercises with Ethan alone, physically move him, change him, all that kind of stuff. My son Jack basically became that help for me even though he had his own worries and stresses about school.
“I contacted the boys’ schools and I said the situation I was in,” she continues “I was heavily in grief and I told them, they weren’t going to be doing schoolwork. Both their schools were fantastic.”
Ethan never got to complete his schooling. Having turned 18 during the first lockdown, he began adult services that autumn.
“He had three nights of the respite under his belt and two weeks of the centre under his belt when he went in on the 22nd of September to his day centre,” Geraldine explains. “He had a great day. They rang me to tell me he had a great day. He went to his respite that evening after, and they rang me about 8 o clock that evening to tell me he was fast asleep and they made a joke about how much he’d had to eat.”
The very next morning Geraldine received a call from Ethan’s respite services to say they’d had to call an ambulance for her son.
“He passed away that evening at a quarter past six, in the bed with me,” Geraldine says. “It came out of nowhere.”
Ethan’s funeral “was a bit of a blur. Luckily, we were at stage 3 at that point so we could have people into the house but they couldn’t stay. There were people coming into our house in a group of two and three. They were very respectful.
“The hardest thing about it for me was that nobody could touch us and I don’t know who the people were because of the masks. It wouldn’t click with me. I couldn’t see their face and I think I was in shock as well.
Lonely funeral
“It was a lonely funeral. There were people trying to give you affection and they couldn’t. And there were people standing behind walls blowing kisses at you and calling your name and saying how sorry there were and you could see that they were crying. Some of my family got to come home with me [after the funeral] and we sat and we had a few drinks in Ethan’s honour. But I didn’t get to hear the stories from school, stories from workers who knew him very well.”
Continued restrictions and lockdown have meant Geraldine has found it very hard to grieve and manage the “loneliness”.
“I can’t even go to a group. I’d love to go to a physical group with parents who have lost their kids and get some support. I can’t and I will not do it over zoom. I won’t do it because my kids will hear me and I don’t want that. I can’t go to my friends’ house and have a drink or a chat with them and have a laugh or tell stories, or go into Ethan’s school and even talk to them or meet up with people who cared for Ethan.
“I have to be very careful of what the kids would hear me say. It’s so important to me. While Ethan was alive I didn’t want them to live in the sadness. While Ethan’s passed I still don’t want them to live in a cloud of sadness.”
Support is something they’re missing hugely as a bereaved family. Geraldine says she and her husband Dave do “a good bit of talking about Ethan” but, she adds “I’m sure when it comes to the nitty gritty Dave would rather talk to someone else because he doesn’t want to load onto me and I don’t want to do that with him. He’s going through a lot. And our own parents are going through a lot and I haven’t seen them through this lockdown either”
“The boys are very good about their feelings. They’ve got a lot of help from LauraLynn over the years and Temple Street and Galway hospital so I couldn’t fault those people at all. But since lockdown none of those people can help us at all in person.
“Jack (16) is very open that he misses his role in the family, which is sad,” Geraldine says. “It’s sad that a child is saying that. He used to help me so much with Ethan.”
Geraldine admits it’s “very hard to watch” her teen son unable to meet his friends at “the very time he needs it” while she herself hides away if she feels she’s about to become very upset.
“I’m trying my best so I suppose I’m masking a lot of it because I’m at home all the time and it’s too hard to let it all out. And everybody’s grieving. Everybody in this bloody house is grieving. There’s only so much you can lay on them.”
