Life limiting disorder


MVIMG_20181012_153849It is Baby Loss Awareness Week this week. I’ve never been more aware of Baby Loss than ever before. And it terrifies me to think how involved I could possibly be at next year’s campaign.

We are in a very unusual situation right now. The vast majority of baby loss comes suddenly, as a complete shock. Whereas we have found ourselves in this odd place where one day we may receive really awful news, or we may not. But no-one is able to let us know what chance of either we have.

Despite this, it definitely feels as though we have begun a sort of milder grieving process. There are so many types of grief: grief of a relationship when it ends, grief of an inability or difficulty in conceiving, grief for a disability or illness. Each suddenly changes the future, your hopes, dreams and imaginings of your future self and the people around you.

One minute we were imagining a life as a family of four, with our two children and all that entails, now, suddenly, we are questioning that life and future. What will we get to experience with Maisie?

You have a variety of weird and shocking thoughts and feelings. Some too awful to contemplate and type in black and white.

I spend a great deal of time fearful that when/if she has gone, I will regret how I am spending my time now. Like filling in Disability Living Allowance forms rather than staring at her sweet sleeping face, doing the washing up rather than holding her, scrolling through Instagram rather than playing with her – it is a new level of mum guilt! But, I think, maybe, we have to keep a degree of normality, for our sanity.

I read blogs and social media posts from those who have been through baby loss and grief with a morbid and terrified fascination. Envisaging this future of loss.

But the vast majority of the time, because she is currently safe, happy, healthy on the surface, flourishing and gaining weight, reaching those development milestones – we kid ourselves that nothing is wrong, and that she will be fine, living to the ripe old age of 100. Maybe there is a teeny tiny chance of this still being true?

I am already well aware that there are a multitude of things we will never see Maisie doing: extreme, high performance sports and exercise (not a huge loss in itself!) It is also extremely unlikely – unless there are huge medical advances – that she will ever bare children, as her heart would never be able to survive a pregnancy. As soon as I had my first baby, I began to dream about being a grandparent – it sounds ridiculous, but it is only then that you start to understand how utterly amazing and wonderful babies are. And then there are just the multitude of milestones you find yourself thinking of, and grieving. Will Ben ever be able to walk her down an aisle? Will I ever be able to have serious talks with her, teenage rows, haircuts, boyfriends, first bras, shopping… quite frankly, there is too much to even think of, it is overwhelming. But in those first few days, it was those things that really knocked you over. Already, these have been scrapped from our thoughts of the future – it’s strange how quickly your hopes and dreams can be modified.

Grief and loss is a really shitty thing. For so many reasons. It can strip the joy from life and all of its true joys. Like when we see Lowen doing something new, saying a new word, dancing, singing, miming – sometimes all I can think is, will we ever see Maisie doing these things? I hate how sometimes it can ruin the baby we do have. The beautiful girl that she is, because sometimes you can’t help yourself thinking of the uncertain future.

We had a little 4-month birthday party for her a few weeks ago. Just some family at home, Lowen and I baked her a chocolate cake and covered it in candles, we all sang happy birthday, and we all blew out the candles. At the very beginning of the singing Ben and I had a tiny lump in our throat, for a moment there was a hint of sadness – but I buried it down as deep as I could, reminding myself to make the very most of such a happy occasion. And that is what we are battling to do, every day.


Leave a Reply