Update

I’ve been meaning to write for a while, and have a number of half started blog posts. There is always so much to write, it is difficult to know where to start.

It is four months today that we said goodnight to Maisie. Which is incredible when she was here for less than six. Time is a bizarre thing, especially when it comes to massive life changing events. Our lives and memories will forever be separated by before and after. Before Maisie’s birth, before she was diagnosed with a heart condition, after she recovered from her heart surgery, before she was diagnosed as deaf, after we were told she was unlikely to live, and finally, before and after the day she died. It’s amazing what an impact a person can make on others in such a short time. One who was unable to talk, unable to stand, unable to hear. But was able to communicate in such an incredible way. Who, despite being so tired, and ill, and probably in pain, seemed so happy to just be alive. I suppose that part of that impact comes from ourselves – comes from our hopes and dreams for her, from our thoughts as to who she could have been and could have become.

You grieve for so much when you loose a child. It isn’t simply grieving a baby.

Firstly there is the physical: your arms: empty of the weight of the baby you almost constantly carried, the feel of her tiny hands in your fingers, the soft hair, the beautiful, perfect feet and toes. The milk in your breasts that is still being produced for that little, hungry mouth that is no longer here.

Then there is the individual, the loss of who she was in particular: a lover of dancing lights and leaves, splashing about in the water, looking at you knowingly, staring at her hands so intently.

There is the loss of your relationship: Maisie and I got to spend a lot of alone time together as Mummy and daughter, and I miss my partner in crime, my constant little shadow in her pram and her car seat. Turning up to appointments, spending days in hospital rooms and precious moments out and about or in the comfort of home.

But a big part that is different is the huge expanse of life that they missed out on. It is really never ending the months and years they never grew to see. I try not to think about it – because, quite frankly, it is too huge. The jobs they could have had, the places they could have seen, the friends they could have made, the children they could have born. And there are all those family relationships: Daddy and daughter, brother and sister, Aunties, Grandparents, Uncles… All that life lost.

I think that, because so much of her life we worried about her survival – we never got to hope and dream for her future all that much. Which makes the grief ease a little. But it is sad in itself, that we spent half of her life preparing ourselves for when it would end. So many conflicting thoughts and emotions!

In all honesty, I sometimes find words so empty and meaningless. They are almost impossible to actually explain the true feelings. They are like nothing I’ve ever experienced, and I find it hard to find the time to really grieve and feel with Lowen around. Life is just so busy – which is both good and bad. But it can make me feel very guilty that I don’t spend enough time thinking about her, writing and talking to her, remembering her, looking at photos and videos. It’s difficult to know what to do – but I’m just coping the only way I know how.

Generally, we do okay – partly because we have no other choice, but partly because we are also so blessed with the family we do have. But I just find myself really close to the edge sometimes. Things that never used to bother me, can make a big difference. If I have an argument with someone, or a bad day, it affects me so much more than it used to – and it just triggers all the feelings, they just bubble up from nowhere. But I’m already getting used to these triggers, and preparing for them. Preparation helps.

We also now have a diagnosis: Complex 1 deficiency, which seems to fit her symptoms. As far as I understand it, this is the most common mitochondrial disorder, but also one of the most severe, with most babies not surviving to be any older than two or three years old. But as with all mitochondrial disorders, there are a number of different types, with all patients presenting differently.

Ben and I are also in the process of getting tested ourselves, to figure out how Maisie inherited the disorder. Although I’m not sure this will definitely be conclusive – as it is so complex.

There are still a number of unknowns, but we’re just taking everything day by day, otherwise it can just become overwhelming…