What do you write when trying to tell the world about your life with a child who has Down Syndrome? So, I tried to remember what it was like when I opened the door to the midwife who came to break the news that I am ‘high risk’ of having a child with Down Syndrome. Those memories are hazy and painful. I do remember a very supportive, clear thinking husband and amazing midwife and consultant obstetrician. When people talk about medical professionals and their handling of expectant and new parents I cringe, because I myself am a doctor. However, my own experience was a supportive midwife who never ever once raised any question about my pregnancy. A consultant Obstetrician who sat us both down, explained the ‘stats of chance’ and when we said we would like to continue the pregnancy and because of the risk of miscarriage did not want further tests, was totally supportive. That was the start and end of any discussion! I wish all expectant parents would have the same experience. I wonder whether we were ‘spared’ as we are both doctors. This remains a mystery….
From those early memories, also floated up a memory of frantically googling ‘Down Syndrome’ and coming across the description of ‘most children keep their mouths open and their tongues hang out’. This coupled with about 30 minutes of teaching at medical school about typical features of Down Syndrome was the sum of my knowledge. This meant my pregnancy was spent agonizing over ‘How will I cope if my baby does have Down Syndrome?’
Once Daniya was born, it was love at first sight! I knew straight away she had Down Syndrome and that just made it bitter sweet, maybe because I could not plan a future for her as we do, knowing full well we have no control over it! However most difficult part was not knowing what to expect? As fate would have it, I did not get much time to fret over these thoughts in that hormone driven, emotionally over charged state of mind. Daniya was unwell and was taken to SCBU (special care baby unit) and then needed surgery at just 10 days old. That hurt so much that it is difficult to put into words.
Once we got her back, we have never looked back. Almost instinctively I knew what to do. From baby massage to baby signing, messy play to portage, physio to speech therapists we have worked hard at making sure that she reaches her potential. We have worked hard but she has worked harder and along the way my lovely, cheeky and determined daughter has taught me a few things about enjoying life, hard work and never giving up! Our life as a family is certainly different but not dull by any means.
Now 11 she is a constant chatter box and the centre of our home-life. She has been in a mainstream setting from the beginning. She had a great time at primary school and ended her last day at primary by getting a special mention and shield at the leavers’ assembly for her hard work, determination and love of learning. A very proud mummy moment which I never envisioned when I held her for the first time. So, this September we have cautiously started mainstream secondary. It is early days and I dare not relax yet!
I have no doubt she has made all of us better people. I have met the people I never knew existed and been introduced to a more ‘empathic’ world. Doctors are strange beings and part of our training is ‘fixing humans’. Hence everyone knows doctors make bad patients. In a similar context, I think I really struggled with not being able to ‘fix’ the Down Syndrome. This painful insight helped me move forward and I hope has helped me become a more caring human being and a health care professional who understands what it is to be on the ‘other side’.
Her younger brother has maturity and understanding which I have seen in kids who have siblings with additional needs. He understood from a young age that having a ‘special sister’ made him a ‘special brother’. This July I listened proudly when it was announced that he has been chosen head boy of his primary school, to be role model for younger pupils and teachers routinely praise his considerate nature.
I must mention my husband who has been my rock, silently standing behind me, always there. He has always believed in Daniya and she adores him. From insisting she learns cycling to ensuring she understands that her school work is as important as her brother’s. Sitting with her to make her do spellings and listening to her reading, and then convincing our nearby Islamic education academy to take her on, he has been there.
To come to the star in our family, well she has a busy schedule. She goes to mainstream swimming lessons, is learning to ride a bike and a horse! She plays at DS football weekly and is part of inclusive cricket team at a nearby club. She also goes to Sunday school for one hour of Islamic studies where she is teacher’s favourite because of her enthusiasm. Then of course dance, drama and variety of activities at our local DS group. She loves to dress up, eat out and wants desperately her very own ‘mobile phone’. She loves Disney movies, playing on computer, a bit of reading and going on holidays. She managed a 4-day residential trip this year with her class and I was left wondering what to do with myself!
The journey is different but it is as fulfilling if not more. It is not easy sailing but good days are more than not so good ones. You are part of a special club. I would say to expectant and new parents ‘Welcome to the family’ ?