Yahoo! 2022- a new year and a new world of possibilities. A holiday that originally booked for September 2020, then changed to July 2021, then September 2021 was ACTUALLY going to happen for my little family! But, I didn’t believe it until we got on the plane. It was the first week of January we were booked to go to Cairns with a bunch of my family to celebrate 70th birthdays and 50th Wedding anniversary milestones. To make a plane trip and holiday go as smoothly as possible, I have learnt the hard way what I need to say and do. I need to make it VERY VERY clear that Luca is disabled. I need to call ahead to book in special assistance for Luca. To ensure- there will be a wheelchair that can take him to the gate. And another one to meet us on arrival. I need to ensure that we get on the plane first to attach his “Firefly” chair that goes on top of a normal plane seat- to ensure that he does not slide off and onto the floor. Most of all- I need to be ASSERTIVE – with staff and passengers alike- that this is what happens when my disabled son flies. I know what I’m doing.

30 Mins before the flight is ready to take off, I give Luca a sedative to help him sleep. I have a bag full of food, crackers, toys- all the stuff a parent would ordinarily pack for a toddler. I sit between Luca and my daughter on the flight. Luca’s dad is on the other side of the aisle. Once we’re in the sky, I feed Luca many crackers to help his ears from popping. He gets restless. I pick him up. He wants to crawl on the floor. He wants to crawl up the aisle. Nope. Back on me. Crawl up over my head. Scream. Cry. I give him more food. Scream. Cry. Give to dad. More food. Look at his favourite toy. Back to me. Cuddle on my lap.

“Is he falling asleep???” Nope. Scream. Crawl on head. Cry. More food. Sit on own seat for a bit. Slide onto floor. Crawl. Back to daddy. OK- you get the point….. That was 3 + hours worth. He doesn’t stare at a screen. Oh how I wish he would. He also doesn’t seem to fall asleep despite having a sedative. Get off the plane. Wheelchair on arrival- life is good. (Not looking forward to flight home).

Go to apartment. The apartment is perfect for our family. 2 bedrooms + sofa bed. Luca’s sister is so happy to get the sofa bed and the huge lounge room tv to herself. Luca has his own room. Luckily he is still tiny- and sleeps on his knees- so fits in a timber cot! I don’t have to worry about how to keep him safe while sleeping. The pool at the hotel is also PERFECT. It has a shallow end that Luca can crawl around in. I sat there while he safely crawled to and on me. Keeping cool in the 37 degree heat!! I was so happy that we were able to enjoy the water together. I didn’t have to hold him. He didn’t scream- he enjoyed the water WITH me. He splashed a lot. The pool was also shaded in the morning and afternoon. So there wasn’t that anxiety of his very fair skin turning red.

It was SO hot in Cairns. 37 degrees and ridiculous humidity. But, I was very thankful to be surrounded by my family who understand that it IS stressful doing things with Luca and getting out. His little body can’t self regulate his temp. We had a cool necktie thing that helped keep him cool. Any place we went had to be inside or cooled in some way. The time spent in a restaurant is always very limited with Luca. He is 7 now, and I still eat in a restaurant like he’s a newborn. On edge. Never know when he’s going to scream the house down protesting that he wants to leave. I’m very thankful that he enjoys chips now- so they usually tie him over- but if the service is slow- he’ll tell me about it. Again, being with family gave me that freedom of saying “I’m going to go back to hotel with Luca” and being able to relax with him. They get it- somewhat. I got to have a break from Luca too. My parents offered to take care of him while I did amazing things like swim after turtles with my daughter, brother and nephew- something not possible with Luca in tow. The holiday was absolutely magical and what I needed. Surrounded by those I love and have no judgement. I’m pretty sure Luca had a great time.

The holiday was perfect. The flight home was a fricken nightmare. I gave Luca some extra sedative to ensure he slept on the way home. It was afternoon- he always naps in the afternoon…..Spoiler alert: he did not sleep on the flight home. He screamed horrible, blood curdling screams for 2/3 hours of the flight. The trauma from that flight alone, has created a new rule that Luca does not fly more than 1.5 hours from Melbourne.

Moving right along…. Luca turned 7 on February 21st. We didn’t have a huge shindig for him. Very subdued. 7 years of lots of questions. 7 years of treading water- wondering what the future holds. We have a genetics appointment next month. Maybe something will come from that. Still undiagnosed- but living a pretty good life. Maybe this is his year to walk or talk…

Not long after his birthday Luca has returned to not being the best sleeper. Screaming at night. Screaming early morning. It is torture for the whole family. What is going on in his little brain. How can we help? What can we do? We ran lots of blood tests- and there was nothing to be seen. He has been on a waiting list to have an MRI on his gut area- but the list is still so backed up from all the MRIs put off due to Covid. There are kids out there with brain tumours who are waiting for MRIs- the backlog is so big. So, yeah- my feeling is that something is going on in Luca’s gut area… but who knows! I have absolutely no idea. So, Luca was given more sleeping meds to help him sleep…. which did somewhat.

Last week, my daughter came home from school with a sore throat. 2 days later she tested positive to Covid. As a super healthy, active child, she went down very hard. Sleeping 75% of the day away. If anyone knows me, they will know that I have been doing everything in my power to avoid bringing Covid home to Luca. I had declined face to face exercise classes, lunches and birthday parties- and said I wouldn’t go back to “normal living” until Luca was double vaxxed. Well, he got double vaxxed on the Friday and on the Monday tested positive to Covid. His normal temperature is usually 34 degrees. His temp got up to 38.4. He was pale. His breathing was off. His pulse was very erratic and pumping hard, out of his neck. So, I packed our bags and took him to hospital. My mind was thinking how bad it affected my daughter, what would it do to him. We spent the night there under watchful eyes of beautiful nurses and doctors. He was monitored and eventually after 16 hours we were sent home because he was doing better. I have no regrets about taking him in to hospital. I would not have slept well at home while he was in bed. I would be fearing the worst. I am so proud of his little body, that it was capable of dealing with Covid. And to think, 7 years ago, he was in ICU because of a UTI.

He is so strong. He is back at school now and I am still in isolation typing this. I am very thankful that Luca’s bus picks him up to take him to school. I am very thankful he is a healthy boy going to school.