It’s 3:30am and I’m wanting to escape to the gym. But, even I think 3:30am is a crazy time to go- so I’ll wait till 4:30am. Luca has been screaming since 1:30am. I have done the things that any parent of a newborn would do. Check his nappy. Give him cuddles. Try rock him to sleep. When all this fails, I give him a top up of “melatonin”- which is meant to help him fall back to sleep. He obviously didn’t get the memo. When will he stop? When can I go? Where is that light at the end of the tunnel?

I wish I could say this was a once off, but, this has been the case for the past 6-8 weeks. 2 weeks ago, in the midst of tears and pulling my hair out, I called Very Special Kids (VSK) for some emergency respite. I couldn’t do it anymore. I didn’t want to look at the boy who was keeping me up at night, and sending me into a mental decline. VSK were able to have Luca for a “holiday” of 4 nights last week.

Before Luca went to VSK, I was a mess. My batteries were dead. 4 nights later, I was my usual positive, bubbly self again. When he came home, that night my batteries started to drain again. Sleep deprivation is a mode of torture and I can’t see the light at the end of the tunnel. Thankfully, I have people lending me torches to help guide me through.

We are planning an escape from the cold, Melbourne weather this weekend. But with this, I am also getting quite anxious. My husband will not be with us, but my parents will be. I’ll be on the plane with both kids. Last time Luca was on a plane, it was very stressful, where I had to hold his crotch the whole 3.25 hours to Cairns. This time, I’m more equipped. I have purchased the seat ALLOWED by Virgin Australia, which means, Luca should be able to sit comfortably on the plane. I’ve noted when booking flights he is DISABLED- a word I feared to say this time last year. I have called ahead to make sure there are no hiccups- because honestly, people with disabilities have enough crap going on- without hiccups along the way. I’m doing my best to make this trip as easy on everyone as possible.

Once we get to Cairns, the kids and I will be in a seperate apartment to my parents. Just like a parent of a newborn- I am fearing what the nights of my “holiday” will bring. If Luca is going to cry all night, wake up my daughter and me- and maybe all the other people in the apartments next door. I am very fearful of this not being an escape at all.

As always- no real updates about anything except:

*Luca doesn’t need glasses at this stage

* Hip xray is going to be next month

*NDIS plan came through and was really pretty shit- and just like everything else- we have to fight very hard, and do lots of admin just to get my son a wheelchair, or walker or whatever else he needs to help him get around in life.

*Luca’s amazing kinder teacher has quit- so while he has his carer- we don’t have the amazing woman that helped him as well as me.

So, I am currently trying to dig myself out of this funk. Writing this blog always helps. Exercise helps- so I am forcing myself to class this morning.

No photos of Luca because he doesn’t want to be my friend at the moment.