Gaining control of my life

Fifteen months after saying goodbye to Esme, I feel like a different person. Despite enduring the toughest few years of my life, I am in the best emotional place I have ever been. I feel in touch with my mind and emotions and able to listen to what my body is telling me.

For the first time, I feel in control of my anxiety. I know what my anxiety is, what triggers it and when it is likely to crop up in my life. I am beginning to understand how it likes to play tricks with my mind and in which situations it is perfectly understandable and only natural to feel anxious. I’m learning to suppress the anxieties which are out of my control or will only make me worry unnecessarily. I am learning to be kind to myself.

After seven months of bereavement counselling, I feel like a different person. My grief now feels more manageable. In one of my early sessions we spoke about not only grieving for the baby I’ve lost but about grieving for losing that baby growing up; hearing her noises; what she looks like, similar or different to Charlotte; her little ways. Through counselling, I have learnt to accept that Esme can’t be with us, it is about learning to live my life the way it is and not thinking about the ‘what ifs’.

For the majority of the year after losing Esme, grief felt like a dark shadow above my eyebrows, it felt so bold and big. It frightened me. Today, those days of carrying the overbearing weight of grief seem fewer and I don’t feel as emotionally exhausted. Through the support of counselling, I am able to say “Esme died” more comfortably. This feels like a huge achievement. Before, I used to say “we said goodbye to Esme” or “Esme passed away” but I could never say “Esme” and “death”, “dead” or “died” out loud. Death is so final. It is the difference between one breath and another. Then they are gone forever. Although it pinches me, it doesn’t have the same level of mental pain attached to it. It is what happened. Esme’s life is complete. I gave birth to her, she lived and fought for her life. She showed nothing but courage, bravery and love and in return was loved by so many, so dearly. She then died in my arms. I have accepted that. That is one of my daughter’s lives.

There are no rules to grief. I choose to cry when I want to. It’s a strange feeling as I have always been one to cry at most things. I find I now choose when to cry. My tears for Esme carry a lot of emotional exhaustion. I have to feel mentally ready for the aftershock if I allow myself to cry for her. I feel more in control of my grief. I know to just go with the flow if I’m having a tough day or where my safe places are where I can let my heart go. However it also scares me that nothing can prepare me for those moments when grief creeps up on me, knocks me off my feet and temporarily steals my world.

The moment I felt I gained most control of my grief was when I was out with Charlotte on a dog walk. I felt in a good place. I was appreciating how lucky I felt to be a mother to Charlotte and enjoying the moments of being out in the countryside with her asleep on my chest. I had nearly finished my walk when grief decided to find me.

I finished the walk by writing this letter to grief.

 

19th September 2017

Dear Grief

Thank you for visiting me today on my beautiful, sunny, peaceful walk. In the future it would be most appreciated if you could remember your manners and forewarn me when you intend to visit rather than creeping up on me like a bad smell.

However, from past experiences it appears this polite notice is not your forte and I am beginning to get used to your unwelcome appearances. As always, I will greet you with a smile, have a chat with you and then kindly tell you to bugger off.

Yours truly,

Amy Campbell

 

And just like that, a weight had lifted from my shoulders. It felt amazing to tell grief to “Bugger off”. I felt I had regained some of my life and no longer was drowned by the heavy weight grief bears. My mood lightened and the hold that grief had had on me during the walk loosened.

‘Moving forwards’

For the first eleven months after Esme died, I found it difficult understanding the concept of ‘moving forwards’. I knew that I would never ever forget Esme and that she will always be with me, but I just couldn’t grasp how to move forwards without feeling that I was forgetting her or leaving her behind. I spoke to a friend to find out how he managed when his Mum sadly passed away a few years earlier. I asked him what he understood by moving forwards and how did he do it? He told me, “Life continues to go on and if you don’t go with it, you get left behind.” That was all I needed to hear. He inspired me to believe it was ok to get on with my life and enjoy it. If he could do it, then so could I. He changed my perspective on what was meant by ‘moving forwards’ and helped make sense of it. A concept I had so often struggled with.

These days, ‘moving forwards’ does sometimes still catch me out. I was recently getting Charlotte ready for bed and looked up to see the black and white photograph of me, Connor and Esme. I’m not sure if it was because I’d had such a wonderful day with Connor and Charlotte choosing a Christmas tree that I hadn’t thought about Esme all afternoon but in the split second I looked at the photograph I was filled with guilt and sadness and my happiness left me. For the first time, the photograph felt as if it was taken a long time ago. My life was moving on and Esme felt further away than usual. It hurt but I hadn’t done anything different other than be happy.

Allowing myself to be happy shouldn’t be such a challenge, but when it is suddenly mixed with the complex emotions of guilt for feeling happy when my life moves forwards without Esme, I find it hard to embrace that this is ok. The neonatal counsellor told me “grief is a wasted emotion” and while at times this is hard to believe, I know my happiness comes from my heart.

Through counselling, I have learnt that my grief won’t go away or get smaller, but “personal growth from the experience lessens the feeling of grief for the majority of the time” (Just ‘B’ Bereavement Support). Grief has surprised me, brought me comfort, angered me and hurt me deep inside but it has also made me aware of what true love and happiness feels like. Esme will always have a big place in my heart and be in my life, just not the way I imagined.

Learning to love the new me

For many months I felt I was living in the shadow of my former self. It’s a frightening and lost place to be. A place where I felt afraid of being unsure of who I am anymore, not feeling secure in my own skin and not knowing which painful memory my mind would jump to next.

If I asked myself “What am I afraid of?”, the truth is, I’ve already lived my worst fears therefore I am afraid of history repeating itself. My world was tipped upside down; my years of imagining and daydreaming about what motherhood would be like were crushed and I had been slowly dragged through hell. I had had to cope with making heartbreaking decisions and then hold my daughter as she took her last breath. What mother, what parents, should have to live through that? But so many do. It is learning to accept that I lost one of my daughters and letting go of that anger and bitterness. It has been a matter of rebuilding my life, my interest in motherhood and understanding that I survived it and have come out the other side.

Acknowledging that I am still a mother of twins has been difficult as so often I feel robbed of it. I sometimes feel in disguise as I only have Charlotte with me. By starting my blog and talking about Esme, those feelings of being a mother of twins are returning. I have discovered my ways of talking about Esme to others, without creating an uncomfortable or sad atmosphere. Just being able to talk about Esme more freely, being truthful about what happened and being bold enough to steer the conversation away from immediately talking about how well Charlotte is doing makes me feel stronger. I am comfortable about talking about Esme and that she died. That was her life, this is my life and I don’t want to shy away from the truth.

I have often thought about how to raise Charlotte as a surviving twin and how to let her know about her younger twin sister, Esme. As Charlotte has got older, it has become clear to me that those moments will happen naturally and Charlotte will guide me. I once watched Charlotte in wonder as she played with her and Esme’s soft bunnies. A little part of me longed for Esme to be playing alongside her but a big part of me just watched with love. I loved the way she looked at both the bunnies, smiled as she realised they were the same, then continued happily chatting to each one in turn. I cherished that moment, knowing Charlotte will find her own ways to answer all my thoughts and questions about how she will understand she is a surviving twin.

I am enjoying learning to love the new me. I am certainly more courageous, got a hell of a lot more inner strength and know I can somehow survive and come out the other side when my world has been tipped upside down. I have shown I am strong enough to face my worst fears head on and understand that I have my own coping strategies for those times when I do hit rock bottom. Since the day Charlotte’s waters went, I have never felt the love and security behind me from family and friends like I do now, that in itself is a gift.

I’ve never really loved who I am. There’s always been things I would change, anxieties I wish never existed or unhappy feelings about things, but losing a baby, nearly losing both my babies, has taught me to be happy with what I have.

Before losing Esme I had never felt happy like I do today. The feeling of happiness, pure happiness is beautiful, whether it lasts five minutes, the morning, the afternoon or the day, nothing compares to it.

Facing my fears

On 26th July I decided to visit the neonatal ward after one of Charlotte’s therapy sessions. I was pleased Connor came with me. I felt anxious about returning to the ward to put my ‘This is my brave face’ blog poster up, as all of my memories of Esme were there. I found it difficult separating my anxiety from fear, excitement and nerves. I was looking forward to seeing my poster up in the family room in the hope that it would help others.

I was grateful to Leeds Neonatal team for always being so supportive and welcoming, and continuing to help me each step of the way, so I felt very proud of myself as I put the poster up on the wall.” Afterwards, I had a walk around the ward. I wanted to have a look at the High Dependency and Special Care rooms to where my girls never quite made it. As I reached the last room and looked through the window, I saw a mum with her twin boys. They were both in the same cot and not needing any breathing support. I instantly wished I had just put my poster up and left the unit. I had only dreamt of seeing my girls like that.

I knew the nurse in the room and she excitedly smiled at me and explained she was just telling the mum of twins all about my blog. The mum came over and from talking to her for just five minutes, I could relate to everything she was saying. She invited me to meet her boys. I was hesitant at first and my initial thoughts were to make an excuse that Charlotte needed feeding. However, I was simultaneously reminded of being so proud of my girls and not getting many chances to show them both off. I felt a connection with this mum and replied, “Of course, I’d love to meet them”.

Her boys were gorgeous and I felt lucky to have had the chance of meeting them. I had flashbacks of all the smells, the machines and the mother’s worries. I felt amazingly proud of how she was coping and looking at her boys reminded me just how incredible and strong premature babies are.  I am grateful that she asked me to see her twins. I had been wanting to return to the ward to support families but I had previously felt unable to do so for fear of seeing twins.

That meeting brought me a realisation that I had the courage to do it. I enjoyed meeting her and her twins, understanding exactly what she was going through and being able to talk to her as a fellow mother of twins. She empowered me and helped to put those fears behind me, and I look forward to returning to the neonatal unit on behalf of Campbellinas to support other families.

Before I left the neonatal ward, I went to have one last look through the windows of the intensive care room, where my girls had spent their first six weeks. As I stood at the door I became stuck. I couldn’t move. As I stood rooted to the spot, I stared through the window and was filled with such heartbreak and yet many happy memories flooded back too. I wasn’t looking at the babies who were currently in intensive care but could only see a happy girl, with a messy top knot in her hair, laughing and joking with the nurses. She would walk many a time between the two incubators to see her twin girls. She would relax in the arm chair, with her feet up and cradle one of her babies who was snuggled safely under her t-shirt while keeping a watchful eye on her other baby. She knew she was lucky she had both her girls since she had seen many babies there one day and gone the next. She was grateful for everything she had, her life felt complete and her heart felt whole.

As I tore myself away from the door it was a comforting yet heart wrenching feeling knowing I had seen my former, happy self. I promised myself that one day my heart will feel whole again.

Connor was chatting to one of the senior sisters as I returned and she gave me a big hug upon recognising that my face was tear stained. She said “You must be brave or stupid.” I laughed and replied, “Both I think, I wanted to face my fears.”

When I got home that day, I wrote down all the memories that came back to me as I stood rooted outside the intensive care unit doors. If I think about it, I’m not sure ‘happy’ was the correct word to use. Yes, to some extent, I was happy to be spending time with my daughters, but I spent most of my time in neonatal feeling anxious and sick with fear. I think I was remembering, viewed through rose tinted glasses, the times before experiencing the heartbreak and pain of losing a baby, when I lived only in the hope that one day I would be taking both Charlotte and Esme home.

A new brave face

My brave face: A face which focuses on the now. An optimistic face and one which never gives up on hope. A face which shows the world I’m brave, strong and hanging on in there. A face which embraces and accepts my darkest fears. A smile which encourages my mind to think, ‘everything’s going to be ok’.

Initially, I hoped that my brave face would hide all the pain of my broken heart. However, I now question if this is being truthful to myself. Do I want to feel that I am hiding? Is there a reason why I feel that I should hide? The answer is no.

With the amazing support from counselling, family, friends and those I have met through social media and writing my blog, I feel comfortable with wearing my heart on my sleeve. Being strong doesn’t always have to be demonstrated by a smile. Being strong is also accepting those moments when I feel weak, accepting that there are times when I need to just stop, and days when I need to take things easier and be kinder to myself. I am who I am.