October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today we share Amelia’s story, written by mum, Wendy.
Before I had Amelia I never dreamt I would have a child with a disability. Instead I dreamt about having a ‘typical’ little girl and what we would do together and how ‘a day in the life’ of us as a little family would be. I’d think about all the usual girly things like doing her hair, the first time I’d paint her nails, going shopping, doing lunch, buying her clothes and so on and so forth.
Then on 7th August 2015 our beautiful little girl was born. At 4.52am our ‘day in the life’ was still going to be all that I had dreamt it would be but by 6am it had changed. We were told Amelia had Down syndrome. I no longer knew what our ‘day in the life’ would be like and that was worrying. It was still the best day of my life but I did wonder what the future held for us and how we would cope.
So fast forward 6 years and our ‘day in the life’ is far more than I could ever imagine. It’s amazing, exhausting, exciting, rewarding, challenging, fun and full of love. It involves all the things I dreamt of and more. Amelia is a very girly little girl and loves playing hairdressers and make up and having her nails painted. She loves clothes and getting dressed up and posing for photos. She loves going out and socialising with family and friends. We go shopping and we do lunch and Amelia having Down syndrome has not changed any part of that.
On the flipside, however, our ‘day in the life’ can have its challenges and it can be tiring. Amelia suffers with anxiety mostly due to loud or sudden noises, she has three mild skin conditions, she has food allergies, she wakes up most nights due to a mild sleep disorder, she needs help physically with certain things throughout the day and her speech and communication is limited, so exhaustion and frustration does play a part along with the need for patience and understanding but for us these are only a very small part of our ‘day in the life’. Yes our ‘to do’ lists may look different to yours i.e. take ear defenders, check restaurant menus, take alternative food etc etc but they’re still just lists. They don’t prevent us from going anywhere or doing anything. They’re our ‘norm’ and are part of our everyday life. They’re built into our routines like brushing our teeth and we manage them mostly with some careful planning, ear defenders and lots of cuddles, reassurances and patience from mummy and daddy.
From a distance our ‘day in the life’ probably looks just like yours. A family living their lives, going to work, going to mainstream school, going on holiday, going on days out, socialising with family and friends. Get that little bit closer and you will probably see some of the differences and challenges we face but get even closer again and you will see that at the heart of our ‘day in the life’ is an amazing, funny, cheeky and very loving little girl. We may manage the challenges but Amelia actually lives them and experiences them and never complains. Instead she spends her days making us laugh, giving us hugs and kisses, spreading joy and really loving life and when she overcomes one of her challenges she gets that excited that the reward for us is immense.
So if you want to know what our ‘day in the life’ is like, it’s more than I ever dreamt it would be. It has it’s challenges but they are far outweighed by the fun, love and pure joy that Amelia brings to our lives.