One Year On...

This time last year my baby girl was fighting for her life in HDU. The nurses had been working through the night and were finally preparing her for her journey fifty miles away to the Children’s Hospital.

I had not once been asked to leave the room, I was there with her the whole time. With no sleep, it was like your worst living dream. I remember noticing that the two main people caring for her were heavily pregnant, the feeling of empathy for them. I remember how the whole room was buzzing with people while I looked on, strangely sane. I remember repeatedly tucking her up in Grandma’s knitted blanket. I remember sat expressing milk for her thinking at least I could still do something. I remember the feel of desperation in the room.

There was a lull after her first cardiac arrest and they had to re-ventilate her without any pain relief. My amazing, brave girl. I was able to make my way to the bed to comfort her and was struck by how cold her little cheek felt. I rushed back to our room on the ward to fetch her hat and had to be extra careful as I placed it on her so as not to disturb the various tubes and lines going into her. I remember the gratitude of a familiar face as one of the nurses from SNICU arrived to help with the transfer.

I had to drive myself up to the hospital, time was short and there was no room in the ambulance for me. Someone handed me a flask of coffee, a whole pack of biscuits stolen from the staff room and a map. I set off before the ambulance left. I was told not to follow in case they had to stop on the way. Get a head start.

On auto pilot I drove, a journey by now I could do in my sleep, literally. I remember suddenly panicking just over half way. Where were they? Had she made it into the ambulance? I was forced to leave my baby at the time she needed me most and it was agony. I was forced to drop from my 90 mile per hour speeding as road works appeared. And then I saw the ambulance in my rear view mirror. My baby girl shot past me, blue lights blaring.

After somehow finding the hospital, somehow managing to park the car, somehow composing myself enough to walk I rejoined my daughter.

I was greeted with the look of kindness and sympathy as they frantically worked on her to try and stabilize her enough for theatre. I was told that she was very weak and had suffered from several cardiac arrests and it was looking unlikely that she would make it to surgery.

I asked them to stop as she went into her final arrest. I asked for her. I held my baby girl, my wonderfully courageous beautiful Mazzy in my arms as she died.

Mummy and Mazzy at the beginning. Mummy and Mazzy at the end.

One year on, I still relive that night. I don’t want to, although every little memory is precious. It is like my brain needs to download at the end of the day, still working through the grief after having to be strong and get through each day.

The evenings are the worst. When it is finally quiet, after I have snuggled my boy down, after I know he is safely tucked up asleep I can grieve. During the days I have to help him with his loss of his sister. He may ask me to chase him around the house holding Mazzy’s little knitted cardigan on it’s hanger. He asks me, “pretend you are Mazzy Mummy and you want to climb up and sit next to me”, “pretend Mazzy is still here and she is eating spaghetti”, “pretend I am Mazzy and you are wrapping me up after my bath and giving me my milk”. These moments although at times can be utterly heart breaking are important. I want him to know that is ok to talk about his sister. No one can know exactly what he is feeling or how much he understands. I just hope that as we drive past the church everyday and shout “morning Mazzy, we miss you” or as we see daisies or a little girl wearing a pretty dress and say, “Mazzy would have liked that” to each other that he will know it is ok to ask questions whenever he needs to.

My now 3 year old son has been my rock, my focus. I help him and he helps me. We are a team. He will never know that he has literally saved me this last year.

One year on and I have become socially awkward. At work, an infrequent customer may ask how the baby is doing? Did you have a girl or a boy? How many children do you have now? Congratulations. Sometimes it is easier just to reply, ‘yes, a girl thank you’, ‘I have had two children’ and ‘Thank you’. I am not lying, just sparing them the utter awkwardness of saying, ‘she died’. While they talk in my head I am standing on the beach. I am facing a wild raging sea and am screaming at the top of my lungs Mazzy’s name. The times I feel able to say, ‘thank you for asking but she died’, the word sound harsh and brutal. I have to watch that person stumble as they unexpectedly search for the right words. There are no right words and actually I have no idea what would be a comfort to hear at that time. I end up supporting them and spout ridiculous stuff like its ok, I got to meet my daughter.

One year on I feel guilty. Guilty if I have a day of adventure and laughter with my boy, family or friends. Guilty if I haven’t cried for a few days. Guilty if I haven’t visited her grave that day. Sometimes the grief almost catches up with you and it takes my breath away. Guilty that she is watching from somewhere and is disappointed with me for getting cross with her brother. Guilty that I have moved her moses basket to the top of the wardrobe where it gathers dust.

One year on I am grateful. Grateful for the support of my friends, those close who take me on adventures with the kids, those who text just to make sure I am ok, those that have cooked tea for me, those who just say that they have been thinking of us, those who send little things in the post, those who just read my posts on facebook and send a kiss. I am grateful for family. I haven’t made it easy and have built a strong wall to protect myself but I know that they are there. I am grateful for all the doctors, nurses, consultants, HCA’s and staff at the hospitals,. I am grateful to have met my beautiful daughter and to have been with her every step of her journey. I am grateful for the five weeks of family time we had at home after her 101 days in hospital. The memories we created, so precious. I am grateful that you have taken time to read this and hope that it explains to my friends and family my irrational behaviour at times, unreturned texts and non attendance to invites.

One year on, I am proud. My precious pearl of a girl. Mazzy, your strength, your patience and your determination humbled me. You were and always will be my incredible daughter.

One year on I love you and miss you and always will.