Life after loss

Comparing grief


I am in two minds about whether to share this post, as I really don’t want to upset anyone, and it is quite a confusing topic. But I think it is also important to be honest about the thoughts and feelings that come with grief – to hopefully normalise some of it, so here it is…

It sounds ridiculous, and I feel pretty embarrassed to admit this – but something I keep finding myself doing is comparing grief, or comparing bereavement. It is a totally pointless activity – but I look at each situation, and think how bad is that situation? How hard must that situation be to cope with?

I think it stems from the quite unusual place we found ourselves in: when we were told that Maisie wasn’t going to live long. We started to anticipate the grief, and we started preparing for it – in a way, we started the grieving process whilst she was still here. And during that, I thought about whether this made everything easier, or harder?

On the one hand, it gave us an opportunity to really appreciate every moment of Maisie’s life, to make as many memories as we possibly could, to spend lots of family time together, to give her new experiences, to take thousands of photos and videos, and try to memorise her face, what it felt like to hold her and touch her soft head, hold her hands, give her a bath and watch her eyes sparkle. …

But on the other, each moment and memory was ever-so-slightly tainted. You had to make a concentrated effort to push the fact away that she may not be here soon – so that you could truly enjoy the moment. Hospital visits and medical appointments and daily chores became increasingly frustrating, as they just felt like lost time. It was so hard to decide how to spend each day, because we had no idea what the future held for us and it became impossible to plan the next months and years.

So when I hear about other deaths now – I consider whether the death was expected. I think sudden, totally unexpected deaths must be horrific. They come from nowhere. And suddenly you are faced with the idea they will never, ever be here with you ever again. You had no chance to say goodbye. No more chances to make special memories, take important photographs, show and tell that person all those thoughts and feelings. But then again, the time you did spend with them was real. Blissfully ignorant and full of pure hope and normality. IMG_20181110_060250

When we found out about Maisie’s illness I had this thought that I find really, really tough: is it better if she dies sooner? Will the pain be less? Will it be easier on Lowen if she is less a part of his life before she goes? It is the oddest situation to find yourself in. I obviously wanted so many more days, weeks, months and years with her – I adored each minute, each hour. But these are the bizarre and torturous thoughts that go through your head. When I hear of a two year old/six-year old/15 year old dying – I think, that must be such an enormous, enormous loss when you have all that history with your child, but then, the parents have also got to have all that time with them. They got to (hopefully) see their child sit up, crawl, take their first steps, say their first word, look up at them and say “mummy?”, shake rattles, run around with other children, knock over towers, splash about in the bath, laugh out loud – all those incredible things that the majority of people, thankfully, get to take for granted.

Then the final thing I think about is: was the death preventable? I personally take a great, great, comfort in the fact that Maisie’s death couldn’t have been prevented. With the very greatest doctors in the world, with all of the drugs and finances – as far as I’m aware – it would have been very hard to keep Maisie alive for much longer. Because, currently, modern medicine can’t do very much for Mitochondrial disease. There were far too many odds against her – with her big, thick heart, her leaky kidneys and acidic blood – her little body just couldn’t cope with all of it all together. In some ways I feel like Maisie had exactly the life she was meant to have. (It may have even been much shorter, had we not found her original heart defect). It may have only been six-months, but it was mainly out of hospital, and she was mainly quite well.

Whereas if the death was an accident, if it was a minor illness which doctors should have seen sooner, if there was a small chance that the person could have been saved – this must just go around and around in your head. You must question everything.

I don’t want to pretend I have the smallest clue how each of these personal grieving situations are – but I think to make sense of my own, I end up comparing it to other potential situations. It helps me to understand how fortunate we actually are. Because we are, so so fortunate.

That’s one of the reasons I find sharing Maisie’s death with new people really difficult – because I don’t want, and don’t feel I deserve, pity. We were so, so lucky to have her, even for such a short time. In a typical proud mum fashion – she was the best daughter ever, and no-one got to be her mum but me! We are so lucky to have the best son ever too! And live in a lovely house surrounded by beautiful things. I’m so grateful to have a wonderful partner, to have an amazing family and awesome friends who I know would do anything for us, to have wonderful ways to express our love for Maisie – with words, and pictures, and photos and crafts. To have access to people and charities that help us when we need them. And also to have the most wonderful online grief community – strangers we’ve never met before who understand, who listen, who send you incredible homemade things in the post to treasure forever, and who, in turn, we get to help too (to make us feel slightly less useless).

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