When Ella was born, we were told soon after her birth that she has Down’s Syndrome. Our world was knocked completely off kilter and we found ourselves grieving for the child we had imagined we would have, a child who didn’t actually exist but whom we had already fallen in love with and had dreams and aspirations for.
She was our first baby and we were brand new parents who had been given a post-natal diagnosis. As a mum, I didn’t want facts, figures, doom and gloom – I wanted to know that others had been where we were, hear their stories and see the reality of Down’s Syndrome, not the black and white bullet point list of signs and symptoms or related health problems on a page in front of me.
To have been able to google ‘Down’s Syndrome’ and find a website such as this or the many other fantastic, upbeat and honest articles, blogs and resources that are now available would have really helped us in those early days.
Over the first weeks and months, we very quickly realised that the reality of having a baby with Down’s Syndrome was very different to the negative, bland and clinical information and leaflets we’d been given as Ella lay in her incubator on the Neonatal Intensive Care Unit. Yes, there were associated challenges and differences from early on– Ella struggled with feeding and had a heart defect that she had successful surgery for at 6 months old. She took longer to meet her milestones, but that meant we got to enjoy each stage of her babyhood for longer. It made us appreciate her development and take pride in even the smallest of her achievements. The milestone I treasure the most and had waited what seemed like forever for was her first smile.
First and foremost, Ella was just a baby. Our baby. She cried when she was upset, hungry or tired. And just like any other baby, she needed cuddles, changing, feeding and love. Even in the early days when she was so small and vulnerable, she always gave back to us so much more than we have given to her.
For whatever reason she came to be ours, we will be eternally grateful. In the beginning, I felt sure that life was never going to be the same again. This has proven to be true, but not for the reasons I worried about then. Most of the time, and this still applies today, the worries I have and problems I have to solve are those shared by mums the world over and have more to do with motherhood and raising a child than they have to do with Down’s Syndrome.
I was determined from the start that Down’s Syndrome will never define Ella or what she is able to do. We made a promise to provide for her everything she needs to become the child and the person she deserves to be.
Yes, there are challenges and some hard times, but I know from experience that the good times will always outweigh the hard times. She has taught me so much over the years and seeing life from a new perspective – ‘A different view’ – is a privilege that not many of us get the chance to experience.
Ella is now 6 and at our local mainstream primary school. She receives the support she needs to keep her safe and supported whilst in school and is making steady progress in all areas of her development. She loves school, has lots of friends and it’s lovely to watch her thrive. She is also a fantastic big sister – Lucy is 4 and they are due another baby sister in October 2017.