October is Down Syndrome Awareness Month and this year Wouldn’t Change A Thing are running their ‘A Day in the Life’ campaign. Individuals with Down syndrome, their families and friends are sharing stories about what ‘a day in the life’ is like for them. By pulling back the curtain and letting people peek inside their lives they hope to challenge some of the misconceptions held by those not lucky enough to know someone with Down syndrome.
For our final blog this month, Mairi Watkins, trustee of Wouldn’t Change A Thing tells us about her daughter, Emma.
Our story began 8 years ago when our daughter Emma was born bringing with her a surprise diagnosis of Down syndrome. So, what is our life like? What is a typical day for us? Well, it’s probably much more like your life than you would imagine.
Emma was our first born and we had 19 months of us as a trio, finding our feet, before her brother Matthew came along. Her dad and I spent many an evening on Google trying to figure out how Down syndrome would impact on Emma and on us as a family. But what we quickly realised was that at very core of everything was our little girl, the centre of our world, a baby like any other.
The best advice we were given early on came from our wonderful paediatrician who said “You have a new baby. Do new baby things. Let her just be part of normal family life.” So in between the speech therapy and physiotherapy appointments were baby swimming classes, music groups, and play dates. Anything ‘different’ about our lives – the hospital appointments or special exercises we did at home to help her reach her physical goals – were swept up in the humdrum of daily life with trips to the supermarket, visiting family, and all the little jobs around the house which never seem to get done once you throw a young baby into the mix! Any worries about how Down syndrome might affect Emma or our family were far outweighed by the joy she brought to our lives ever day.
Fast forward 8 years, and I ask myself what does “a day in the life” look like for us now? And the answer is there, right in front of me. All around me. This is OUR life with Down syndrome. A life just like many other households on a Monday morning. I’m running around trying to get everyone organised for the day whilst the children have formed a slick and effective team, thwarting my every move to try and get them to eat breakfast and put uniforms on.
They are fighting, then laughing, then chasing each other around, with me running behind them trying to brush teeth, fix hair, put uniforms on. Lost shoes are located, water bottles filled, and playtime snacks argued over. Emma packs the bottles and snacks into both school bags (a job she loves to do and which gives her a sense of independence). Matthew helps her zip up her jacket (a task her little fingers still find tricky). In the middle of it all he says “Hey Emma, I love you!” and she replies “Love you too!” Then they’re off, out of the door, with me chasing behind. And there it is. One tiny snapshot of our typical day. And I wouldn’t change a thing about it. And I’m pretty sure they wouldn’t either.
