It’s a funny way of describing death; drawing your mind to misplacing something, like keys or your wallet. It seems such a flippant comment for something that hits you when you are least expecting it, that creeps up on you and curls its cold fingers around your heart and envelopes you in grief. It’s one of those words that doesn’t even start to describe the crushing pain that you feel; the difficulty to catch your breath and the struggle to swing your legs and get out of bed in the morning. But it is what it is. My great-grandmother always used to say that you should be nice to everyone as you don’t know what private battle they are facing behind closed doors, and this couldn’t be truer with my friend and old workmate, Kay.
Today is the two year anniversary of the death of her baby girl Cara, and I wanted to give her the chance to share her story with you. There is an option at the bottom of the post to donate to a little girl called Madison Merrick, who was born with a rare birth defect. She has spent most of her life in hospital, just as Cara did. Madison and her mother Alana need to relocate to the UK for lifesaving surgery so she can go home, and be free to enjoy her childhood. Please dig deep.
Kay and Cara’s Story
Two years ago today was the worst day of my life. On the 17th April 2011, my daughter died.
We had been in the Intensive Care Unit for over 3 weeks and Cara had been sedated and kept alive by a ventilator for the whole of that time. I had last seen her open her eyes just over a week before when her Daddy and I had smiled at her. I had no idea it would be the last time.
I still replay those 24 hours in my head at least twice a day. The doctors had told us in the morning that Cara wasn’t going to recover as her lungs were too badly damaged and we agreed it would be best to let her go. I knew in my heart it was the right thing to do and that I had to be strong for my baby. My maternal instinct kicked in harder than it ever had before and I knew I had to help her leave this world.
This wasn’t because she had suffered enough, because Cara was a fighter. She had fought so hard to stay with us, but I accepted that day that there was no hope for her and that fighting would no longer be an option. The doctors increased her medication so that there would be no pain and I washed her, changed her nappy, sang to her and wrapped my baby in her favourite blanket. Everyone she loved and who loved her got a chance to say goodbye, and then it was me, Cara and her Daddy left in the room, and he handed her to me.
I remember letting out a short gasp of ‘no’, and then the doctor removed her breathing tube. She took her last breath and my daughter was gone. I had no idea how I would go on.
That night when we got into bed I curled into my soon-to-be husband and sobbed loudly.
The next couple of weeks went by in a blur; I was a walking zombie, obsessed with small tasks – I shook uncontrollably and often struggled to string a sentence together. I busied myself with arrangements for the funeral and although I was dying inside I hid it well. I carried on with Cara as my motivation. She fought so hard for her life and I knew I had to keep fighting for mine.
We buried Cara with my Nana and Granddad; I like to think they are all together somewhere. The funeral passed quickly, I didn’t break down, I didn’t even cry, I just got on with the day and exchanged pleasantries with the hundreds of people who turned up to pay their respects. I was numb, and the full extent of what had happened and what impact it would have hadn’t hit me. I put on a mask and decided I was going to endure this pain with the same dignity that Cara endured hers.
I arranged our wedding shortly after the funeral.
We flew the whole family to Turkey and had what can only be described as a good old knees up. I smiled all day, but I look at the photos now and get a horrible feeling at the pit of my stomach. It was all a mask, inside I was dying. At the time it was the best thing I could have done; I busied my mind with wedding preparations as the alternative didn’t bear thinking about. Not yet.
I was just killing time.
We flew home from Turkey to the harsh reality that ‘life goes on’. I knew I needed to be with my husband and he worked in London, miles away from my family in Manchester. I contacted my old employer who seemed happy to have me back and although the office had relocated to unfamiliar surroundings, a lot of the faces were familiar, and that was exactly what I needed.
I was still killing time.
This was a dark time, full of dark days. My thoughts were interrupted often with replays of hospital scenes and images of Cara, but at work I couldn’t let them take over. My heart ached, I felt guilty and I wanted to feel bad because I knew everything that had happened was my fault, but I had to focus on my job. It worked for a while and I managed to bury my grief a little.
There was one girl who sat opposite me in the office who distracted me. I liked her and we gossiped through the day and passed the time together, but when she left for a new job the pieces fell apart and the distraction was no longer there. I couldn’t concentrate and could feel myself slipping back into the dark place I was coming to recognise again. I knew something had to change, and so I resigned and moved back to Manchester.
I knew I had to face what had happened. This was 9 months after Cara’s death.
The pain you feel when you lose a child is physical, I can feel it now as I type. It’s a grinding feeling at the pit of my stomach, my throat is dry with a huge lump in it and I just gasped for breath because I still can’t believe she’s never coming back. It shocks me every time, and I know that I’ll experience it at some point every day for the rest of my life. I’ve accepted it. People tell me often I’m amazing, or inspirational. I’m not, I just have no choice.
A month after I finished work I found out I was expecting again, and not long after I found out I was having twins. I felt a flicker of hope, that I could one day be happy again. I just had to get through the next 9 months.
I was still killing time.
The pregnancy gave me a new focus, but brought up a new set of feelings. What if the babies were sick? What if they had the Kostmanns gene too? I knew it wasn’t likely and had been assured by the doctors Cara’s condition was in no way hereditary, but it didn’t stop me convincing myself that something would go wrong. The worry gave me a new focus, and I buried my grief again.
Time dragged by and on the 30th August, 2012 I gave birth to 2 baby boys. They were 8 weeks premature and needed a stay in hospital. Once again I found myself surrounded by doctors, nurses and monitors. This time though it was different, the boys were not sick, they were not fighting for their lives. They were just getting strong enough to come home, and there were no complications. I cried when their cords fell off. You see, Cara’s never did. It was what convinced the doctor that diagnosed her that she had Kostmann’s, and the start of the story that you have just read.
I started to believe that everything would be ok, and they were not going to die. My world shifted, I stopped killing time. This was 1 year and 4 months after Cara’s death.
I knew that I had to deal with my grief, for my sons, so shortly after the boys came home I arranged some sessions with a bereavement counsellor. I don’t think it helped me to deal with my grief, or make the pain any more bearable. But it did help me to realise that I had been dealing with it all along. I just didn’t know it until now. My coping mechanisms were to put the mask on, to kill time, to distract myself, to ignore the intrusive thoughts when they came along and not let them take over my every waking thought. I faced a daily battle with myself and my emotions, and I used all these techniques to get through the day without breaking down completely. I had been coping.
I control my grief. I cry in the shower every morning or whenever I’m alone in the car, but hardly ever in front of other people because if I let the world see how I really feel there’s a chance it’ll take over and I’ll stop living. I’ll continue to exist but I won’t be me, just the girl who can’t stop crying because she lost her baby. I’ll just be existing. I owe it to Cara and my sons to live my life.
Cara was born with Kostmanns Syndrome; it’s a one in a million genetic disorder that meant she couldn’t make neutrophils. That’s the white blood cell that fights bacteria and so she had no defence against bacterial infections. She was diagnosed at 4 months old, and you would have had no idea of her condition if I hadn’t have told you. She was a happy and healthy 7 month old baby when we took her for a bone marrow transplant. Our choices were limited, we could take her for transplant or keep her at home knowing that at any point she would get an infection she couldn’t fight off. Either way, there was a chance she would die. The doctors found her a well matched donor cord and we were told there was a 90% chance she would walk out of that hospital and live a full life. No one thought she would die. I put my trust in the doctors and believed the transplant was the right option for her, and that decision that will haunt me forever. We stayed in the hospital nearly 6 months and I watched my daughter go through an endless cycle of complications, treatments and pain I can’t bear to talk about. She passed away just after her first birthday. I will always feel guilty. I know I had no choice, but I will always feel guilty. It’s what mother’s do.
Guilt is a huge part of grief, I’m sure I’d feel the same way if she were run over by a bus. It never goes away but it’s not as intense anymore, I’ve just learned to accept it and to know that when it takes over me the feeling will pass. I wanted to punish myself for a long time and I allowed the guilt to take over, now I look back at how brave she was and I want to carry on with the same strength and determination she had.
Two years on from Cara’s death and I am living. I am not killing time every day; I am enjoying precious moments with my sons and my family and have a focus that’s not going anywhere. I have accepted that my life will always be tainted, but have also gained a new outlook on life. Now I don’t worry about anything; if it’s not life threatening and it doesn’t immediately affect the health and happiness of my family it’s not a problem. I see the worries of everyday life that used to get me down and smile because I know there is nothing to worry about anymore. The worst has already happened.
I’m sure my grief isn’t going anywhere, the pain will be with me forever. But the saying ‘time is a great healer’ is proving to be true to an extent. I used to laugh at it, but I’m starting to believe it. I started out just trying to get through each day, then week, then month. Now, I don’t take so much notice of time. The anniversaries are the hardest, Christmas, birthdays and days like today. I still find myself killing time around those dates. A part of me has gone, and is never coming back.
To a mother who’s just lost a child, I’d say you have to carry on. Find a way to get through each day and find your life again, it’s still there.
Life will never be the same, you will never be the same person. The pain will never go away but you’ll get better at dealing with it and eventually you’ll find yourself enjoying a moment again, and the times between the pain will get longer and longer.
If Kay’s story has moved you then please help us do something special for Cara’s anniversary and donate to Madison Merrick – a little girl who is also battling for her life. Kay’s friends and family raised money for the Manchester Children’s Critical Care Fund, and Kay would now love us to support a little girl who is still fighting her battle. One less pint in the pub or bottle of wine on a night out could change this little girl’s life, so dig deep and donate.
If you would like to find out more about Madison Merrick’s story click here.
To directly donate to her cause click here.
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