One month ago today we lost Estella.
It's been a hard day.
A month before Estella died Maria wrote down a view of a typical day in our amazing daughter's life.
So here it is. As told by cuddly mummy
My name is Estella Sweetman-Lopez and I’m 7 months old.
I was diagnosed at 8 weeks with Spinal Muscular Atrophy type I. At an age where everything should have been about happiness and being thrilled about the future my parents were told I would live no more than a couple of years at the most and, more likely, not even seen my first birthday. My condition is the main genetic killer of young children and affects one in 6000 births and there are only around 50 cases diagnosed every year. That's why most people have never heard about it, not even doctors.
Basically SMA is weakening my body to such an extent that I only can move my hands a bit because the rest of me feels so heavy and tired. I can’t breathe by myself and I need a ventilator and oxygen at all times and a tube to be fed. Positioning me is another big issue as even the smallest of movements can cause me a cardio respiratory crisis.
Despite all this, I'm a very alert and smart little girl, my brain is bright as a pin and I can tell you exactly what I want with my facial expressions. I love painting and watching Pocoyo and In the Night Garden and listening to music, specially Cabaret soundtrack and Lady Gaga. And here, in the fun bit, is where Bluebell Wood Children’s Hospice comes to life. It’s where I’m living with my mum and dad; also my grandparents are here as I got very poorly. If I were at home I would have to be confined to my cot as moving is so difficult but here they have the resources so I can get the best from my days.
I get up at 9am and the nurses help my mum and grandparents wash and feed me because daddy is out at work. As soon as I wake up I watch Pocoyo. I can get upset if not. At 11am its bath time and physio with grandma. After that, I meet some very funny animals- a meerkat and a skunk! They are very tickly but very gentle with me. At 12pm it’s dinner time. My mum and grandparents tuck into a tasty meal prepared by the Bluebell Wood chefs- today it’s homemade lamb stew, and rice pudding. I think they enjoy it. The chefs save some dinner for my daddy to have for his tea.
After dinner, Lee the respiratory specialist comes to see me to check that I’m comfortable. After that, I go back into the living room to play and see everyone. I then go into the messy play room and Bluebell Wood’s play co-ordinators, Diane and Catherine, help me paint with my feet. I make a picture for my mum and dad with my footprints on. It’s a lovely sunny day so after the painting we decide to go out into the garden for a bit. The Bluebell Wood gardens are lovely; they are full of lots of flowers and fun things for older children to do. We pick some flowers and we all have a dance in the sunshine.
I spend the rest of the afternoon playing with mum and my grandparents with all the sensory toys Bluebell Wood has, and listening to my favourite music. Then, when daddy comes back from work at 6pm, I have playtime with him. He reads me my favourite story – “The Cat in the Hat”. After my parents and grandparents have had tea, we all relax until bedtime, which is 8.30pm. My mum then changes my mask, my position and my nappy and I get read stories, and my parents sing lullabies to me. Then I have a cuddle and a kiss goodnight. Dad gets up to check me once in the night –to check all my equipment is working; and the nurses who are on night duty check on me every couple of hours. This means that mum and dad can get a good night’s sleep, knowing that the nurses are watching over me. My dad checks on me again at 6am before he goes to work.
I love being at Bluebell Wood and I think I got better here thanks to the Bluebell Wood staff. The last crisis I had I was given a couple of days to live but I think I found life at Bluebell Wood had so much to offer that here I am, enjoying every single hour with love and laughter. They not only take care of me but also of my family so we can have lots of good memories and my mum can enjoy being my mum and not only my round the clock carer. Here at Bluebell I can do all that a 7 months old baby should enjoy, I can have a childhood no matter how long it lasts for, and I can look at tomorrow with a smile in my face because good things will continue happening to me.
Estella lived the last two months of her life, surrounded by people who loved her and cherished every single day she stayed with us. When the day came that we had to say goodbye, she did it peacefully in my arms while daddy sang to her. There was no noise, nor drama but just peace of mind she had a fulfilling life. All this was just possible thanks to such a magical place like bluebell wood, where miracles happen everyday. Our precious tinker never left us as we can feel her everyday by our side as she never left bluebell, her footprints are the star on their Christmas tree. Estella means star and bluebell means hope and love for many families like mine. We will be forever grateful for giving us the most valuable presents of all, love and laughter.
That was what Maria wrote. Four weeks later Estella said goodbye.
One month ago today
We miss those special special days.
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