As time goes by…

This day is always hard, but as time goes by I do think that it gets a little easier. I keep busy, make sure I’m not on my own too much and the day passes much like any other. There is truth in the saying that you cannot have a rainbow without rain, and I would say this to anyone else who looses a baby: it will  get easier and you will get through it. You will always find that a little bit of you is tinged with sadness, but you can be happy again, you will laugh and you will find joy in the little things. Sometimes I think you will appreciate the little things even more, appreciate the good times and realise that there is great value in appreciating the everyday joys and triumphs.

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Happy Birthday

Six years seems like a long time and like only yesterday all at once. When I woke up this morning Tilly was not the first thing that came into my mind, nor the fact that today is her sixth birthday. I feel guilty. I feel guilty that even though she is not here I have rebuilt my life, my plan b, and I can still be happy without her. I know that that’s okay though, and I know that that is the best tribute to her. There is no ‘shrine’ in our house, I do not visit the grave often, I do not cry often but it’s there in the normal everyday. When I care for women, I think about how I would have liked my care to be, the communication and the compassion. I appreciate the life we have, even if it’s not the one we had planned.

5 months ago I started a new job, and I have started to tell people I work with about Tilly, the dreaded ‘have you only got the one..?’ question. These are my collegues and friends and working with women and their babies is perhaps where I am most vulnerable, it’s important that they know so that if I am caught off guard, I don’t have to explain myself all over again. Yesterday I was asked ‘how did you get through?’  and I didn’t really know how to answer, but today I think I would say ‘because of people like you, people that aren’t afraid to ask me what happened, people that aren’t afraid to say her name’. Please say her name, because all I need to do is to remember.

 

Baby loss awareness week

This blog entry was published today by the lovely Julz Scott On her blog Melody and Me, as part of a series on infant loss. Much is written On stillbirth but less seems to be in the open about those babies that die a few short weeks after they are born, babies like Tilly Grace.

On the 22 of March 2012 I gave birth to a beautiful baby girl, Tilly Grace. She lived for 30 days. 5 of those were spent at home with us and the rest in Hospital. She spent most of her short life on a ventilator in paediatric intensive care, where she died on the 24 of April after her ventilator was withdrawn. Tilly had early infantile epileptic encephalopathy and her outlook was very poor, she was unable to maintain her own ventilation and was heavily medicated for seizures, with limited brain activity.

Lost

But here’s the thing, Tilly was not a miscarriage, she was not still born, she was not even a neonatal death. She was an infant death. These terms are defined. There are charities and support for different types of loss. Yet somehow, when you give birth to an apparently healthy baby who later dies, you get lost.

In the early hours of the 25^th of April my husband and I left the hospital without our baby. We had to go home and tell our three and a half year old that her sister had died, that she would not be coming home again. I had to tell a midwife who called to see ‘how things were’ that I was organising a funeral’. I had to attend a postnatal check up on my own and tell the GP that my baby had died. And the week before Tilly’s first birthday, I had the results of her new born blood spot test through the post. Not one health professional got in contact with me. Not one health professional offered any support. Once I left that hospital we were on our own.

Infant Loss

When I look back, I wonder how we got though those early days, weeks and months, but we did. It’s appalling that there is such limited provision to support parents and families after the loss of a baby, and that there is such a difference across regions. I was lucky to have a supportive network and over the months I was able to find coping mechanisms, but I can see how easily it could have been very different. No one family should feel alone and unsupported after losing a child.

I am about to embark on a career that will allow me to support women and families in many ways, including when they lose a baby. I endeavour to do my best so that no women has to explain why she hasn’t got her baby at her postnatal check, to ensure that I do the communicating and that she accesses the right support. Something positive out of something devastating. Knowing that my experience has shaped me but it doesn’t define me, that I live to make both my girls proud.

‘Option B’

This is the title of a book written by a woman called Sheryl Sandberg, I’m yet to read it but I’ve read a few interviews recently and she talks of how found her way after the sudden death of her husband. How we can find meaning after tragedy. How we can take our ‘option B’.

So, I guess that’s where I am. I am a few weeks off of completing my degree in midwifery: My option B. Loosing Tilly was what led me here, my ‘option A’ would have been being a mum to my two girls and then returning to the health & fitness industry. Instead I have become passionate about caring for women, babies and their families and giving them the best care I possibly can. This is my ‘option B’ and whilst it may not be what I had originally dreamed of, I don’t afford it any less. In fact, because of my journey to ‘option B’ I give it everything. Option B? My husband, my daughter and Tilly’s legacy, providing compassionate, women centred midwifery care and giving 100% every time.

Mind Over Marathon

What an interesting concept…running yourself to better mental health. Exercise has long been known to have benefits on both our mental and physical health and it was inspirational to see the runners on the BBC documentary start their journey towards the London Marathon. I can absolutely advocate for the benefits of running and I think my decision to train for the London Marathon after Tilly’s death was one of the best I could have made for my emotional well being. It gave me focus and purpose at a time when I was lost, I had Darcy and Russ but the direction that I thought my life was going to take  was vastly different from the situation I found myself in.

5 years after Tilly’s death I felt inspired, as I always do, by the London Marathon and I will be entering the ballot next week when it opens. As I prepare to enter a new chapter in my life as a qualified midwife I will use running as a release as I begin to work independently, becoming a midwife in my own right. I always joke that I don’t really ‘do’ stress and I am sure that having an outlet like running is what helps me keep stress in check. I am under no disillusion that the first 6 months of been qualified will test me in many ways, and I hope that running will give me the head space I need, just as it helped my with my grief.

Sometimes I need comfort and acknowledgement, sometimes i need focus and purpose. Always I need to remember, sometimes it can feel as if I am alone in remembering Tilly. Never be afraid to say her name…no matter how much time has passed. And if you’re not sure what to say, you can always come running with me!

Time for contemplation…

There’s nothing like the combination of Tilly’s birthday, Mothers day, a week on transitional care and Comic Relief to get you thinking.

Five years ago we had just got home with Tilly and little did we know about what the next few weeks would bring. This week, I spent her birthday looking after other women and their babies. Was it hard? Yes. Did I think about her? All day. Does the pain get less? No. You see, the pain doesn’t get less, it doesn’t go anywhere you just learn to deal with it. You learn to focus on other things, and for me that is my family and becoming the best midwife I can be. When I think about how far I’ve come over the past five years, I feel proud. I’m proud that I’ve managed to take tragedy and turn it into something positive, proud that I’ve learn you can come back from the most devastating of losses and proud that I’ve shown Darcy that whatever happens, we’ll be okay.

Mother’s day approaches, and I think about Tilly a little more than usual but I concentrate on being with Darcy because I can still make a difference to her life and I never want her to live in the shadow of what has happened to us. Tilly is part of our family, we remember her and we talk about her, but Darcy is the here, the now and the future.

And then there’s Comic Relief, and I think about the women and their babies who die because there is no access to the basics. Children that die of diseases that are easily preventable. Places where there is no safeguarding, no rape crisis, no trained midwives, no obstetric team at the end of an emergency call bell. And it makes me sad all over again. We take so much for granted. Sometimes, even when life gets really shitty, we should remember how lucky we are.

 

 

 

 

Three little words…

So, this week has been a week where I’ve given a lot of thought to the subject of baby loss. As I get stuck into my dissertation I find myself surrounded by evidence that, actually, we still are not consistently providing women with the care they need after they loose a baby. Whether the baby dies before birth, during labour, or after delivery women are often left floundering through the coming weeks and months with very little support.

Once I left hospital for the final time. With Russ. Without my baby. Not a single health care professional came to see us. No one phoned. Well, no one phoned except the midwife who called to see “how are things?”. So I told her. Like I told the GP at my postnatal check up. Like I shouldn’t have had to tell anyone involved in our care. I told them: my baby died. And, until you have to say those words, you will never know quite how they stick in your throat and make you eyes sting. How they break your heart every single time.

So, this week, in amongst the piles of evidence, the systematic reviews and the guidelines, even before I have critiqued literature and drawn conclusions I have confirmed why I am doing what I am doing. If I can ensure that no body who I care for has to explain why her baby is not with her, or why she doesn’t want to have her baby weighed on day 5, then I am making a difference. Saving her those three little words can make all the difference.

So, here we are again. Christmas number 4, minus 1. It’s hard at this time of year, knowing that someone is missing, the irony of delivering other people’s babies whilst still missing my own with unrelenting heartbreak. But I don’t talk about it. Nobody ever asks about it. Christmas with only one little girl, when there should be two is heartbreaking.

I focus on the good stuff, watching Darcy have fun, the build up and the excitement. This year we will be spending Christmas with my family, which means Darcy will be in the company of other kids. Pretty sure that my brother and his wife don’t quite know how much of a difference this will make to us. This will make a big difference, to see Darcy with other children at Christmas and to have that as a distraction as to what might have been is invaluable.

But don’t be mistaken. I will think of her. For the whole day, and every day there after. we miss you Tilly Grace.

Blog off!

Blogs, Vlogs, Twitter, Instagram and Facebook. The world of social media, gives a platform for important issues but I wonder whether it takes away a sense of true personal communication?

Occasionally I still have moments where I feel paralysed by a deep sense of sadness and grief, but I don’t write a cryptic Facebook status. I don’t feel it is the write platform for it, not for me. This blog is sometimes a way of me channelling my grief, of sharing thoughts on loosing a baby and hopefully for helping others through confusing and dark times too. Maybe others consider this an inappropriate platform to discuss grief, sadness or the death of a baby. The cryptic Facebook status seems like a cry for help, and this makes me wonder: Have we lost the art of communication? Are we no longer able to talk to our friends? I feel a bit hurt if a close friend feels that they need to share sad, painful news via a Facebook status, do people not feel that they are able to talk to their friends anymore? And then there’s the ‘life is shit’ status…what does that mean? And does it mean something if I don’t respond?

At the opposite end of the spectrum is the ‘my life is so amazing’ status. Creating a sense that we should all live up to an amazing (if unrealistic) ideal. Again, as a friend sometimes it’s lovely to hear good news via a more personal route…the ancient art of talking or even a text message. We are all guilty of this sometimes I’m sure…

And maybe that’s why it’s so hard to talk. Because we think that everyone else is having an amazing time and we feel feel inadequate if we’re not, or because everyone is having a shit time and we don’t think we should bother them. Who knows, but maybe we should talk more? A little bit of personal attention, making your friends feel like friends…not someone among 450 other people you met once or twice.

This week is Baby Loss Awareness week and I wonder how many people feel that they can’t talk to people because it isn’t what we do anymore? I know I’m not the greatest at opening up but maybe that’s because I can’t wade through the social media mine field and work out who would like to listen and who would like to just read my status?

So, if I don’t respond to your cryptic Facebook status it’s not because I don’t care, it’s because, if you really wanted me to know, you would tell me. One of my longest and closest friends once said to me “if you wouldn’t shout it in the play gound, don’t put it on Facebook” so maybe that’s something to consider and maybe we can start talking to each other a little bit more instead. Don’t judge a person by their Facebook Status or their Instagram and this week, if you know someone has lost a baby, ask them how they are.

Let’s talk more.

 

 

 

 

Everyday…

I miss her. And some days I miss her a little bit more than others. It’s that time of year when I feel that our family is missing someone more acutely than I feel it at other times. I still enjoy the summer as much as anyone but some things are always tinged with sadness. When I sense that our daughter craves the company of another child or when I think, just fleetingly, about how Tilly would be now and what she would be like.

It’s also a time of year when you seem to strike up more conversations with people (maybe that’s just me), in queues, sat in fields, over a glass of something or lunch where it’s crowded. Often conversations come around to children or jobs. Is she your only one? Why did you decide to become a midwife? Often, I fib, or skirt around the answer. Babies dying is not really the thing to talk about in polite company is it? Maybe this is part of the British sensibility? That we only talk about what is deemed appropriate, but maybe this is what makes loosing a child harder in the long term. That we become self conscious about it, we don’t want to make someone else feel uncomfortable. Maybe we should talk about it. So it doesn’t feel like a dark little secret. Sometimes this is what makes it more upsetting, that fact that once you’ve lost a child you worry more about upsetting others than your own grief.

As September approaches I hear the conversations of the mum’s whose children will be starting school in September, how their babies are all  grown up. Sometimes they are friends who I think might remember that my baby would be going to school too, in her tiny uniform, lined up with their beautiful children. Tilly’s first milestone. But my baby never grew up. And sometimes I wish that someone else might remember that too.