When I first joined some online forums related to Down syndrome, when Nicholas was only tiny, Kylie was one of the first people to welcome me. She has always been so warm and welcoming as new families arrive on the scene, and her love and pride for her youngest son, Felix, is apparent from the moment you meet her. Apart from all that, Kylie is, hands down, the spunkiest and youngest looking mother of nine that I know 😉 I am so grateful she was able to share part of her story with us here. ~ Annie x
A couple of months before my 40th birthday, I gave birth to my ninth baby – a little guy, Felix, who has changed my life in the most incredible way. We found out at 19 weeks pregnant that Felix had an absent nasal bone; a fairly strong indicator for Down syndrome. Coupled with another few ‘soft markers’, including my age, our medical team was pretty convinced. We opted not to have any further testing, but studied up on Down syndrome to prepare for the birth of our son who, I might add, we had just fallen even more in love with.
At 36 weeks pregnant, my waters broke and I was flown, by the Royal Flying Doctor Service, to the city to deliver our much anticipated little boy. He was born, as expected, with those incredible almond shaped eyes, a single crease on his palm and a big gap between his toes. He had Down syndrome, and he was absolutely perfect. He only needed a couple of days in the special care unit with a NG tube for feeds, before he was strong enough to breastfeed properly and could come home on day four. He has been charming the world ever since!
Country parenting, when you have a child with Down syndrome, provides some challenges. You need to enjoy driving long distances, have a reliable car, and a bottomless tank of petrol! Services are not at your doorstep, and it often requires having to go out of your way to access therapies, medical assistance and early intervention.
When Felix was born, we were living in a large regional country centre, four hours drive from Adelaide in South Australia. Although there weren’t as many services available as there are in the city, we were lucky to have a Paediatrician who travelled regularly to the area, a team of therapists (although they changed often), a wonderful playgroup for children with special needs, a fantastic GP and a hospital emergency room for all those middle of the night croup attacks. We still had to travel to the city for specialist appointments and surgeries, but we are lucky because Felix hasn’t had any life threatening health challenges.
A few months before Felix’s third birthday, we moved to a tiny little farming town two and a half hours from Adelaide. The nearest hospital is 40km away, as is the nearest GP and Felix’s Physiotherapist. Our Paediatrician is 100km away, and so is ‘Riding for the Disabled’, where Felix does horse riding. Finding therapists has been incredibly difficult, so we have resorted to driving really long distances to access quality services for Felix. This can be exhausting at times. There are often weeks when I’m in the car more than out of it. However, when I look at the way Felix is developing so beautifully, and I see the benefits of the early intervention he has received, I am so thankful and I know that all that driving has been worth it!
The pay off to country living is, of course, the lifestyle and all the learning and discovering that comes with it. Everyone in our tiny little community has embraced Felix and loves spending time with him. He has been invited out to farms to watch the sheep shearing, and been driven around to see all the animals. He has patted alpacas, pigs, goats, cows, horses and sheep. He has had rides on huge pieces of farm machinery, motorbikes and go-karts. He regularly splashes in puddles and plays in the mud. He was even given a pet lamb for his third birthday last year! Collecting the eggs from our chickens is one of his favourite things to do. He has learnt to be gentle with the eggs… after a bit of trial and error. There are always different places to explore, which is perfect for a boy who loves being outside. Felix is a bit of a local celebrity. Being such a small place, everyone knows him and goes out of their way to say hello. Felix always obliges with a smile and a wave. I wouldn’t swap our lifestyle for anything in the world!
Things may change as Felix gets older. There may come a time when, being closer to the city, might suit Felix better. He may want to socialise on a regular basis with other kids who have Down syndrome. It will really depend on what is important to Felix and what will make him the most happy and content in his life. For the time being, country living suits him perfectly. He is happiest when he is wearing his gumboots and throwing out grain to the chooks….and I’m at my happiest watching him!
Kylie is a 43 year year old Mum from rural South Australia, who has had nine children and is now Granny to two beautiful grandchildren. When she isn’t driving all over the countryside, Kylie keeps us updated on Felix’s adventures on their blog A Beautiful Life.