Rebecca is one of those women I have long admired for the love, positivity and pragmatism that shines through in the face of challenges. As well as just being lovely, she is clever, warm and thoughtful, and someone I know I can turn to if I need some considered advice. Thank you, Rebecca, for sharing part of your parenting journey here with us today. ~ Annie x
Ryan was born in June 2011. I’ve always felt child birth is altogether surprising enough and I’m way too impatient to wait so long until I find out whether our baby is a boy or a girl. From 20 weeks we knew we were having a little boy, a perfect match for his big sister. Within weeks he was already known by name by our family and friends, with everyone excitedly planning for ‘Baby Ryan’ to arrive. The day he was born was more surprising than I could have imagined.
Regardless of the many scans I had during my pregnancy, Ryan had a few secrets to reveal. The first, most apparent one was his cleft palate – a surprise because it didn’t show up on any scan even though we’d looked carefully for it given my babies are at higher risk for a cleft. The technician had even zoomed in on his face with a ‘look no cleft’ when I’d asked her to check. I’ve since found out cleft palates rarely show up on ultrasound.
The next surprise revealed itself in many ways – his floppiness, small close set features, low set ears and almond shaped eyes. We were very quickly advised that there was a good chance he had Down Syndrome, a fact that was confirmed several days later using blood tests.
The next week would reveal his final secret, a heart defect no one had suspected.
The next few months were spent learning to feed our son, expressing milk like crazy and learning to navigate a new world of doctors and therapists. We had new diagnoses to deal with too – nystagmus, a squint in both his eyes, and a mild-to-moderate hearing loss. We spent months learning what Down Syndrome is, understanding his various medical conditions and figuring out how to best help Ryan meet his milestones. Most importantly we fell deeply in love with our son. We discovered his enormous smiles and contagious giggle and marvelled when he started meeting his milestones, often exceeding everyone’s expectations.
Then shortly after he turned one our world fell apart. The worst fear of every parent of a child with Down Syndrome, that their child will be the 1 in 95 to develop leukaemia, became our nightmare. We were devastated. It’s hard to describe the horror of being told your baby son has cancer. I didn’t know then the things I know now – that kids with Down syndrome respond so much better to the chemotherapy or that the survival rate of Ryan’s type of leukaemia is more than twice that of his 46-chromosome peers. At that time I just knew that chemo is poison, and that cancer treatment is a hard, horrible thing to put your child through. We uprooted our family, moving to Melbourne for seven months for his treatment, dragging my mum with us for support.
We did the best we could to create a normal life for our kids. We were amazed at how resilient Ryan is, how often he surprised the doctors and us alike with how well he coped with his treatment. All up he did six rounds of intense chemo, suffered three major infections, one of which put him in ICU and received 26 blood product transfusions. It was a hard, stressful time in our lives, but not one devoid of joy. We realised the value of days not spent in hospital and were determined to make the most of the ‘big city’ opportunities we don’t get at home. Then one day it was all over. Ryan was in remission, he’d finished treatment and we could all go home.
The 20 months since then have been busy. Three surgeries – to remove his tonsils and adenoids to relieve sleep apnoea, his cleft palate repair, and surgery to straighten his eyes. Numerous trips to Melbourne, appointments and constant blood tests to ensure he hasn’t relapsed. Endless hours of therapy. Ryan has learnt to sit by himself, crawl, stand and walk. He started signing to us, counting and talking in multiple word sentences. He and his sister have discovered the joys of playing chasey together. He’s grown from a charming chubby baby to a 3 year old with attitude and a terrific sense of humour. Our pride in him, our daughter and our family is immense.
One day I realised – we live the life most people fear when they get a prenatal diagnosis of Down syndrome. The heart defect, leukaemia, surgeries and therapy. Lots and lots of appointments. And now that it’s our reality, I wonder why it strikes so much fear into people that the certain death of their much wanted baby through abortion is preferable to the life we lead. I wonder why I thought it might be too hard or a burden when I first found out our little man came with a bit extra. To be honest, I now wonder what all the fuss was about. Why are we so frightened of disability?
Here’s the thing – if you do have a child with Down syndrome, it’s really unlikely that they’ll have anywhere near as many medical issues as Ryan does. But even if they do, their life and yours won’t be filled with suffering, your days won’t be filled with regret for the child you have and the life you lead. There will be challenges but, if anything, your life will be richer and fuller than it was before.
Ryan danced his way through seven months of chemotherapy. He lives life with joy and passion. He embodies determination. He’s taught us so much about the value of life, the importance of positivity and joy. Our life is good. He has never suffered from Down syndrome and neither have we. If anything, Down syndrome has deepened our experience of life and opened the door into worlds I never knew existed. It’s given me some of the best friends I’ve ever had and brought people into my life who inspire me with their passion and courage. I’m a better person and a better mother for the gift of our son. If I had a choice between that mythical ‘perfect’ baby we all expect when we’re pregnant and Ryan, I’d still choose Ryan every time.
And no, he won’t be living with us for ever. He’s got until 25 to find his way in the world, just like his sister….
Rebecca lives with her husband and two children in Tasmania. She is an environmental scientist who enjoys the many benefits of working from home, including spending most of her days wearing ugg boots and being interrupted frequently by little people. She also enjoys the luxury of a full-time stay at home husband who’s handy in the kitchen and takes control of the mountains of washing generated by her family every week. In her spare time she’s on the Committee of Down Syndrome Tasmania and is enjoying taking on a variety of volunteer roles to support families of people living with Down syndrome.