World Cerebral Palsy Day with Ara-Jane Reading
Sep 30
With World Cerebral Palsy Day being held this month, our little family of four chooses to celebrate the abilities of our daughters, not their disabilities.
Both our girls have Cerebral Palsy.
CP is a physical disability that affects movement and posture and is the most common physical disability in childhood. There are more than 34,000 people in Australia living with Cerebral Palsy.
Both our daughters have had strokes and as a result both have CP and other disabilities and medical conditions. But our story starts with Keeley, who is now 10 years old. She survived a grade 4 bilateral stroke in-utero. The stroke damaged more than 75% of her brain and had a less than 10% chance of surviving childbirth. The doctors told us “that her brain is not compatible with the outside world you are the only thing keeping her alive.” I was 33 weeks pregnant when we learnt that Keeley had survived her stroke. I carried Keeley to full term knowing that we might only have minutes or hours with her if she survived childbirth. Looking back now I can say that at the time, those 7 weeks were the hardest weeks mental for us. Not knowing if Keeley would survive or if we would become parents. But it was in the weeks leading up to her due date, Cory and I made the decision that whatever happened after birth we would be grateful for and give her the best life possible no matter what her disabilities.
Keeley was born by emergency caesarean and came out crying just like any other baby. She was breathing on her own. We had reached the first of many milestones. We had a baby girl and we were parents. We knew that the road ahead of us was going to be a different one than planned. We knew we were in the same storm as other brand new parents but we were in a different boat. She was definitely our rainbow after a terrible storm. As the days turned into weeks and months, we realised we had one very determined stubborn little girl. She started to prove all the doctors, professors and therapists wrong. Keeley worked hard every day to learn things that come natural to neurotypical babies. Like learning to walk, talk and use her vision. Keeley’s whole body is affected by her Cerebral Palsy, with her right side affected the most. But this doesn’t stop her. She has found her own unique way of doing things. From the way she stands up, to opening a texta with a lid on it, to how she eats her food. She is resilient, happy and has a smile that lights up any room.
When Keeley was 4years old we welcomed our second daughter Delaney into the world. But before we tried for Delaney we had a whole range of testing done to try and workout why Keeley had had a stroke. The genetics team couldn’t find anything. But for us lightning did strike in the same spot twice. At around the 8weeks old mark Delaney also had a stroke. The genetics teams did rather testing and we finally found out the reason why the girls both have had strokes. The girls have a very rare genetic disease that is inherited from me. So this is where we decided our family was complete and there would be no more children.
Delaney has mild Cerebral Palsy. It only affects her right side. She is cheeky, determined, empathic, and a little ratbag. And even though Delaney herself is disabled she is so kind, caring and patient with Keeley. Delaney is definitely an old soul.
There’s a saying about people and friends, something like “people come into your life for a reason, a season or a lifetime.” And for us this is true. We have met the most amazing children and families on our special needs journey. People we would never have met if our girls didn’t have Cerebral Palsy.
And our family. Our Families have been our rock throughout this 10year journey. We are so lucky to have so many uncles, aunties, cousins and grandparents that make sure our girls never miss out and are able to be just like any other little girl. It sure does take a village to raise kids.
We have never ‘cotton wooled’ our girls. We have always had a can-do attitude - from getting them up the big slides at the show, fishing only using one hand or swimming in the ocean. We are trying to make them strong, resilient, polite, independent little humans. We are super lucky that we live in a country that is full of people that challenge the norm, that fight for inclusion and diversity and we have amazing technology at our fingertips.
Ara-Jane Reading
Keeley and Delaney’s Mum!