The Moment

It was a moment I’d often heard about. Now it hit me unexpectedly.

“Mum, why is Cayden’s brain different?”

The voice belonged to my curious six year old son.

I was driving. I was exhausted after weeks and nights of sick children. I wasn’t prepared. But the moment was here; the moment where I needed to come up with an age-appropriate explanation for why Cayden had so many challenges.

“Well Luke, I guess when Cayden’s body was being formed, some of the parts of his DNA didn’t quite form right. It created something in his body we call Down Syndrome. His brain absorbs things a little differently and it means it takes him a lot longer to learn things. Some kids with Down Syndrome only learn to walk at Cayden’s age now, or even later. Then on top of that, Cayden’s brain formed with something else, called autism. You know how Cayden doesn’t really talk? Some children with autism never learn to speak. Cayden doesn’t know about how to use toilets, does he? Some children with autism don’t learn that either, or how to ride a bike, ever. Cayden’s life will look very, very different to your life or my life. Things take longer for him to learn and his journey is going to be very different to ours.”

At that statement I choked up. I started to cry as I navigated driving the streets.

Luke absorbed my words quietly. “Thanks for the Lego Mum.”

“I love you Luke. I hope you’ll have a lot of fun with it.”

Right then it hit me afresh. The journey between two different parenting worlds that I have to bridge. One healthy, able son, enjoying the delights of the second hand Lego I had just picked up for him. The other – our second son, who can’t even get his hands on the choking hazard world of Lego that’s kept behind locked baby gates. One who chatters non stop from sun up to sun down (I’ll acknowledge he takes after his mother). The other, who lives in a world almost devoid of spoken words. One who loves to dive into food. The other who is still spoon feed puree as a preschooler. One who is fast and able and intelligent; one who is a kindy room two years below his age level because he is not safe with hazards like scissors and does not know how to communicate with children his own age.

The differences are large. And try as I might, I can not always bridge them.

I can love my sons with all that I have within me; but I can not change the dynamics of our life.

I have poured my entire life into learning techniques and designing new strategies to help Cayden learn the normal, everyday tasks most of us take for granted.

I have not succeeded in teaching him anywhere near as much as I had hoped. I thought for sure by now he would be drinking – anything – from a water bottle or cup for himself. I thought he might be chewing on baby rusks or crackers by now.

But no. That is not our journey. At least not yet.

I don’t know if Cayden will ever learn these things. I honestly don’t know. It’s hard to think about schooling in a year or so when I start to realise it really isn’t about learning to read or write anymore. It’s about “learning life skills”. Learning how to dress yourself; use a toilet; be independent.

School will be a different scope for us with our younger son.

I don’t have wise words to share. I don’t have advice. Life doesn’t always look like what we expected.

What do I hold on to? I don’t really know. Maybe it’s the moments – going out for a bike ride with Cayden on the back. Enjoying nature when I can in this way. Moments when I sit watching Cayden’s favourite nursery rhymes on tv with both of my kids and our home is calm. Dinner is cooking in the crockpot (chicken enchilada casserole on nacho chips). It might feel simple, but for me it’s not. 3 weeks of sick children, high fevers, numerous night wakes, medical appointments, exhaustion, keeping up with the housework – any calm moment I notice, and I appreciate.

I guess those are the moments you store up energy. Or rebuild the emptied reserves! You prepare yourself for the next step of the journey; the next bottle of milk I’m about to give Cayden now; the next question from my bright six year old; the next task in the world of special needs parenting.

I’ll enjoy the moments.