Childless Parents Newsletter, Winter 2020

Newsletter for Childless Parents | www.tcf.org.uk 15 Annabelle Annabelle would have been 12 years old on 28th October 2020 and we would have been on holiday, Annabelle’s birthday always, fortunately, fell in School (Primary) half term. We would have been going on holiday and having a party too! Annabelle made us so happy, she was always happy. We are so proud of her and what she achieved at both School and home. Her friends and family miss her so much. School celebrated her birthday last year (prior Covid-19) and everyone wore yellow, and decked the school in yellow – Annabelle’s favourite colour and raised funds for PWSA (Prader Willi Syndrome Association). We jointly funded the commissioning of ‘Annabelle’s Heart Seat’ as a lasting memory at School incorporating all the things she loved so much in the world, for example, birds, monkeys, teddy bears, rabbits, flowers. It is excruciatingly painful losing your only child, trying to survive and carry on, honouring your only child’s life. All I can say is, you do the best you can, when you can! TCF has been a lifeline to me in various ways, in particular the support from Mary Hartley, and her compassion. Also her knowledge about the many TCF Library books I have borrowed. The service is excellent. Thank you. Annabelle had a rare complex genetic disorder, Prader Willi Syndrome, (1 in 29,000), and Scoliosis (treated with ‘MAGEC’ rods - titanium rods) in her back at just 4 years of age, lengthened every 3 months as an outpatient, and then changed every 3 years. You would have never guessed looking at her, would you! Annabelle ‘happily’ had speech and language therapy (and began talking at 5 years of age) ; physiotherapy, occupational therapy – i.e. regular hospital appointments throughout her life! Parents/Carers have to fight ‘doubly’ hard for a disabled child’s life ‘the minute’ they are born. Annabelle never complained, she was always happy, and always wanting to buy gifts for her friends. She loved going to School, Brownies, Donkey riding, dressing up, reading, dancing, dogs, and visiting her family/friends. Annabelle passed away suddenly, on holiday, Easter 2018, with her mum, whilst visiting one of her Godmother’s (dad had to travel down) - she didn’t show the symptoms that are recorded on her death certificate! As her mother I carry the burden for ‘letting her down’ the rest of my life but one things is for sure, we both loved Annabelle to bits, and we always will. I ask for God’s and Annabelle’s forgiveness every day. We will always try and do things to honour her life, no matter how small or big they are. Life is so very different now, we are told to ‘re-invent’ ourselves, it’s the hardest thing to do in the world, and to carry on. I hope ‘my’ story may help someone? I know TCF has helped me. Thank you. Helen Brookes, Annabelle’s Mum