May 2016 was my last month with my precious daughter, I cannot believe that almost three years have gone by since then. A lot has changed, and in some way it seems ages ago I held my gorgeous girl in my arms.
We got back from our holiday in Newquay at the end of April and May was a very hard month for all of us. The cancer made Esther very ill: her left eye was badly swollen, she could barely walk, she was talking some nonsense, sleeping and eating a lot, and she could not pass urine or stool anymore, so she had to have a catheter put in. She was taking many oral medication, she managed to stay off her syringe driver for most of the month, until it became too difficult for her to swallow her meds and I asked to have the driver put back on.
Esther was mostly quiet, sometimes looking at books, colouring, playing with eye pads… she loved organising her colourful eye pads in bags depending on their pattern, one on top of the other in exactly the same way.. she was so precise! It was not all negatives though, I have precious memories of Esther reading her Peppa Pig books sitting on her bed, making up the words and smiling, of walks pushing her along in her new pushchair around the streets of Claines, of midnight snacks with mozzarella and strawberry jam…. We also went to the woods for a few days, near Sherwood forest, with my parents this time. Unfortunately the weather was a bit hit and miss during this short break, and although I believe Esther liked the idea of staying in a chalet in the middle of a forest, her disease was very advanced now and she was feeling generally very unwell. I cannot imagine what she went through: she was coughing a lot and having difficulty breathing, her appetite was disappearing, she slept in my arms for long hours during the day. She was comfortable though, never complaining of any pain or discomfort. She was a very strong girl.
At the end of May we came back from the Forest Holiday and the weather over the last week of Esther’s life was gorgeous. Esther got her make-a-wish gift, a round garden pod, very large and comfortable, where she spent the last few days of her life sleeping comfortably under the warm spring sun. I was focused in making her as happy as I could and giving her everything she needed. My mum left on Saturday 4th June and a couple of days later, on Tuesday 7th June, Esther earned her Angel wings at 7:30 am. It was a very serene passing, she slipped away during her sleep, after being quite agitated overnight, so much so that we had to call the Orchard nurses during the early hours of the morning to give her some sedative to calm her down. I was lying next to her, holding her hand, when she took her last breath.
Loosing your child is unimaginably painful, I cannot begin to describe the way I felt immediately after and over the following days and weeks. I would never wish to anyone to experience the grief, desperation, loneliness I felt after she left me, and that I still feel. They say that time heal all the wounds, but it’s not true, you never heal from such a devastating loss. With time you learn to manage the pain and you find other ways to love your child and to honour the precious, unbreakable bond that connects with them. I will talk about this in another post.
Going back to the events, after Esther passed away we called the Orchard nurses, her doctor came over to acknowledge her death as required by law, and we were asked if we wanted to take Esther to the local children hospice, where a room was prepared for us. There we were met by our family worker Jen and shortly after by Father Brian, who said some prayers and gave to Esther a final goodbye. At Acorns children hospice in Worcester there are two cold rooms that bereaved families can use: they are decorated exactly like normal bedrooms, but their are kept at very low temperature. We brought candles, flowers, pictures to personalise the room a little, and Esther’s little body spent there a week, while we were organising her funeral. We visited every day and spent there most of the day: the hospice staff was fantastic, making us cups of tea and being supportive.
I want to end this long post with a few words on Esther’s funeral. It took place at St. George’s Roman Catholic church on 15th June, my family and Simon families were present, together with relatives, colleagues, friends, nurses and many parents of Esther’s little friends. We kept our journey with Esther’s illness very private, but still many people joined us to say farewell to our special daughter. After the service some tributes to Esther were read: moving words from Sharon and Peter, the Orchard nurses, uncle David. I also wrote a letter to Esther but I didn’t read it at church, I read it to her and put it in her coffin together with some photos, her favourite toys, some gifts from her friends, Sofia the toy giraffe from her baby sister and her special frozen blanket.
Esther was buried at Astwood cemetery, on top of a hill under a pear tree. I visit her there almost every day. After the funeral Sharon and Peter organised a little get together at Little Squirrels and we had drinks and snacks in the den, where Esther spent so many hours playing happily with her little friends.
I spent the weeks and months following her funeral organising a memorial for her to put at her grave site. This kept me busy and gave something to do that somehow was still for her, now that I could not longer take care of my precious girl. I ordered a beautiful garden memorial at a stonemason’s shop in Carrara, Italy, which was delivered and installed in February 2017. We also ordered a bench for Little Squirrels nursery, which was put in a new garden created for her and dedicated to her memory.