School boy!

Just hanging at The Nonnis house!

Fear in my eyes.

What a world we’re living in at the moment- all of us. I’ve been meaning to update this blog for many months- but there’s never been a good time to sit down and write… and here we are- all of us, together at home.

A whole new world started for us on Tuesday 4th February, where my son, Luca STARTED SCHOOL.  Surprisingly, there were no tears that day. I expected to. Perhaps its the fact that (luckily) Luca is happy to go to anyone… he does not cling to me or only want me. (I don’t take offence to that!) So, we dropped him off that morning, saw his other 5 class mates (thats right -6 in a class!) and said goodbye. In the afternoon his allocated school bus dropped him home. From day 2 his bus collects him from home at 7:40am and delivers him home 4:45pm (parents of kids with disabilities need all the perks they can get!) Its a very long day for a little boy- but he is so happy! The bus driver and attendant on the bus give him so much love. And of course all the teachers and therapists at school also adore him.

When Luca gets home, I run him a bath and get him to tell me all about his day. Oh wait… he can’t talk! So, luckily there is a communication book that comes home that his teacher fills out everyday. I read about him “walking” and being very “chatty”. Not bad for a kid that can’t walk or talk. This walking and talking business comes up again at “Student Support Group” meeting which is equivalent to a parent-teacher interview. Apparently Luca has been “very loud in class and always has something to say” (makes lots of noises vocally) so the teacher has been encouraging him to raise his hand if he has “something to say”! LOL! In regards to walking, they have a walker at school. At one stage the teachers were talking, the next, Luca and his class mate had walked straight past them and into the courtyard! Luca plotting an escape…. just casually walking out the door. LOL!!

This communication book, I read every night. It gives me a glimpse of my boy who wasn’t meant to make it past 2 years old, who is now a school boy. Is he being cheeky with the teachers? Is he learning new skills? Is he making friends? Is he living his best life? Going by this communication book, I’d say YES. Luca IS living his best life. He is happy.

There are so many layers of trust when I put Luca on that bus to go to school. I trust he’s secure and safe on the bus. I trust that he gets to school and into class safely. I trust he is not in any danger at school. I trust his teachers, therapists and fellow students to respect and make Luca happy during his time at school. When you have a child that can not talk or walk- you have to trust the people around him. You have to trust your instincts and you have to trust Luca’s moods. My boy is happy and sleeping well. He IS safe and healthy.

Term 1 is done now. His school shut one day earlier than other Victorian schools, with a staff member being suspected  of having COVID-19.  DHHS don’t believe there were any close contacts at the school- so the kids should all be OK. I’m still watching Luca like a hawk- because he does have a compromised immune system and could prove fatal if he did get COVID-19.

I’ve looked back at photos recently. Ones where I have fear in my eyes that any day could be Luca’s last. That horrible future ahead of me. With the current COVID-19 outbreak, people not being able to control certain parts of their lives, I’m seeing that same fear in a lot of peoples eyes. That unknown- yet horrible future. Its taken me many years to do it…. but you just have to try and live for now. Today. Take every day as it comes. Stay at home. Love your family (and friends online!).

*NB We still don’t have a diagnosis or any real answers to Luca’s condition. All research results came back negative to all the known genetic conditions. It has been 4.5 years since we first started searching for answers.