I write this in a foggy, shakey daze. Last night, Luca woke twice. He is like a newborn all over- but his screams aren’t very cute. I have two pairs of slippers now. One for normal wear and the other, for overnight Luca wake ups. They are soft and don’t make a noise to try and keep Luca’s dad and sister asleep. Sometimes, no matter how quiet I’m being, Lucas’ screams become too loud, too constant and wake the house. In the morning, Luca is not happy. His sister is not happy. I am not happy. I email his paediatrician and hope that the new dosage of a particular drug will be the answer. And one night it is. He sleeps through the night. My batteries recharged. The next night, the drug and dosage that worked the night before, makes hardly any difference and he wakes and screams like never before.

This vicious cycle has been going on since April. Four months. Might not sound a lot, if he was a baby- but you know, he’s four and a half years old. A medication Luca was on to help him sleep, was suddenly discontinued by the drug company. My consistent sleep- gone. In my eyes, its super hard to find Luca “cute” right now. Of course I love him, but our friendship is very strained at the moment. His favourite thing to do is eat- but lately, he’s been screaming while I feed him too.

Since my last blog post, I’ve had a few escapes. Yet, always long for the next one. When Luca has stays at Very Special Kids, all the staff tell me how much they love having Luca and everyone fights over who is going to take care of him. They love his cuddles. They love tickling him. They love his quiet and timid nature. They think he is so cute.

Luca had his official assessment with our local Specialist School. I’m so bloody excited about him starting next year. The staff all commented on how cute Luca was and how they will all be fighting to work with him. In his classroom, there will be a max of 7 kids (all with various forms of intellectual and physical disabilities), there will be daily access to physics, occupational therapist and speech pathologists. It’s such an awesome school and fit for Luca.

But what happens when he outgrows his “cute”? Will he be fussed over as much as he is now? What if this screaming stage is not a phase? I’m fearful for all the love he gets, just… disappearing. I don’t want people to shy away or be scared of my innocent son. But my biggest fear is fearing my own son. The more he screams at night and day, the more tears he cries- he more anxious I am to see him or be with him.

Just give me a full night’s sleep and he’ll be my best mate again AND the cutest kid in the world.