17 Mar Down Syndrome and Our Family
One dad shares how his life became richer after a difficult diagnosis.
My wife Lorrain’s labour and birth was as ‘textbook’ as you can get – except that I delivered our baby. The midwife left the birthing suite briefly to get a heat pack, and with a push our baby’s head appeared. “He’s crowning, he’s crowning!” I screamed. Another push and our baby boy landed safely in my hands. Years of backyard cricket had finally paid off.
At 3.04am on the 18th October 2012, Jireh (pronounced Jai-ruh) Shaun Ali greeted the world for the first time, the youngest of seven kids. By that afternoon we were ready to take our baby home to meet his brothers and sisters. Then the head paediatrician came into the room and said, “We think Jireh has Trisomy 21 or what you may know as Down syndrome”.
Suddenly our world turned upside down, and most of what came next was a blur…
We do recall him saying, “Statistically he is likely to experience heart, eye, bowel, hearing and various physical and intellectual development issues – but it is a spectrum disorder. I’m sorry. We’re going to do some tests.” And then he left. It felt cold and clinical and we had absolutely no concept of what might happen next.
Lorrain burst into tears and I held her in shock. About 24 hours later the diagnosis was confirmed, however the issues the paediatrician suggested might occur proved to be false. He called it “dodging a bullet” – we were just thankful.
Our responses to the diagnosis were quite different.
Lorrain didn’t really want to talk about or acknowledge it; she needed time to process what this meant for Jireh and our family’s life.
I, on the other hand, wanted to discuss and know everything I possibly could about Down syndrome. The evening of the diagnosis, I didn’t sleep. I read, researched and scoured the internet for 12 hours straight.
We shared the news with all our kids over dinner. Our eldest (then 20 years old) immediately burst into tears, but our other five just looked quizzically at us. We explained at great length what it could mean for Jirah’s life and that because it’s a ‘spectrum’ he may live life exactly as they do, or he may have some bigger health and intellectual challenges.
We also talked about how other people may perceive and treat Jirah, and why it was so important we embraced difference, rather than being fearful or aggressive towards it.
Our then nine year old blurted out, “No-one better mess with Jireh or they will be messing with us!” This brought a chorus of support from his siblings and we had to calm the violent role-playing that ensued. We certainly don’t endorse any form of violence, but it warmed my heart to hear them speak so passionately in Jireh’s defence.
Our love and our kids’ love for Jireh is fierce. We love all our children equally and deeply, but their vulnerability brings out the best and worst in us. The thought of anyone hurting Jirah or limiting him, even unintentionally or out of ignorance, draws out the strongest feelings. I read somewhere that “worrying is a bit like praying for what you don’t want”, so we try not to worry and look to the future with great hope.
We have the same dreams for Jireh as we have for all our kids: that they live healthy and content lives and make a positive difference to people around them.
We are inspired by daily stories of people with Down syndrome, not simply functioning effectively, but making a significant and positive difference in their community. Jireh loves water, the pool and swimming, so we think he could be an Olympic swimmer.
What’s surprised me most about being Jireh’s dad is how ignorant I was of the disability sector. I work in the community sector and considered myself informed and understanding – I was wrong. Jireh has opened our lives to communities, families and people who often live with and face great ignorance and injustice, yet they do it with such resilience and grace. Our lives are vastly richer as a consequence.
World Down Syndrome is a day to help raise awareness of what Down syndrome is and what it means to have Down syndrome.