Time has moved- not as fast as other parents might feel- but it definitely has moved on past those horrible sleepless nights which lasted for months and months. Luca still wakes up 1-2 nights a week, but I can cope with that. It also helps that I still go to bed at 8-8:30pm (yes, even when the sun is still up)!

2019 has meant a full year without a hospital visit for Luca. While all around him, his little mates have dealt with some horrible hospital stays and some precious lives have also been lost. We are so fortunate to have our boy in relatively good health. He has created some beautiful friendships whilst attending his kinder and SWAN playgroups.

In the next few weeks, we will say goodbye to some of his kinder friends. The kids that tell me what type of day Luca had at kinder. The kids that go get his favourite toys out when they see us arrive. The kids that help him wash his hands. The kids that don’t have any idea that theres something “wrong” with Luca… they just know him as “Luca” and they help him. And love him and care for him. Things change when kids get to school age- they get a bit frightened of things that a different.

Luca and his kinder friends all graduated last week. Tears flooded my eyes as all the horrors we endured in the first few years of his life flashed through my brain. I watched him being held with love and fierce loyalty by his aide,  Christylee. He was wearing a graduation gown and hat. Absolutely ridiculous for any other kid- but to see my boy there- alive- graduating kinder garten- I was a teary mess. My crying went from sad to joy to sad again thinking about Luca no longer having Christylee by his side 3 days a week. Needless to say, my tears are falling again as I write this.

Next year, Luca will be attending a specialist school 5 days a week. He will have new teachers and allied health specialist to wrap around his finger. We have attended 3 orientation sessions and he has done well in all them (although a bit screamy-which I’m told all preppies are initially!). There is no more than 7 students per class. He will be collected (in his wheelchair) by a bus, from our house. The bus will take him to school and then bring him home in the afternoon. The school and its facilities, itself are absolutely amazing. I have cried (again) many times at how lucky we are to live in this country and area and in this time- where schools like this exist. My mum came along to one of the sessions and also cried at how wonderful the school is.

And just because going to school isn’t a big enough deal… Luca will be starting horse riding next year with Riding for the Disabled (RDA). This is a 30 minute session where (eventually) Luca gets on a little pony and two people help him stay on and one person leads the horse. It is extremely good for his core, balance and posture…. not to mention something just for him (that his sister will be jealous of). He did a bit of screaming on the day of assessment, but they re-assure me that some kids don’t even get on a horse for the first few sessions… then eventually they’re ok. I’m ok with this- and Luca will have to be!!

Luca is not walking nor talking but he’s mostly happy -so we’re happy.  From our little family to yours, have a lovely Christmas and happy new year.

N xo