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Sleep deprivation

I am exhausted 😭

Another rough night for my son and us with his prolonged waking.

If anything, this sleep diary we've been keeping has taught me that I have no fucking clue how Matt and I are physically functioning, because we are all getting the least amount of sleep humanly possible at this point.

Tonight, my son has been awake since just before midnight. We're now at 4:50am and he's still wide awake, bless him.

It's not his fault, though. Something a lot of people don't know is that my son actually has a diagnosed sleep disorder.
He's had that formally written within his medical reports since he was nearly 3.


A lot of people hear me talk about his sleep troubles, but when I say that, I don't mean the usual difficulties that lots of children have with sleep, fighting bedtime, waking up a couple of times or needing help settling back down.

For my son, it can mean waking in the middle of the night and being completely awake for hours, sometimes leading into the next afternoon. Not half asleep, not lying there trying to drift back off, I mean properly awake, alert, full of energy and ready to start his day while the rest of the world is asleep.

We can spend hours upon hours trying to resettle him, sometimes over and over again, and his body just will not switch back off.

And because of Raylen's other needs, we can't just leave him awake in his room and go back to sleep ourselves. I can't even bring him into my bed and lay him beside me and go back to sleep.
He has no understanding of danger and needs us there to supervise him, keep him safe, regulate him and meet whatever care needs come up throughout those hours.

So when Raylen doesn't sleep, we don't sleep either.

Some nights he can sleep brilliantly, though these are getting rarer and rarer, which makes the whole thing even more unpredictable. Then another night he can wake before midnight and still be partying like he's at fucking Ibiza five hours later. 😂

Keeping this sleep diary has actually been quite eye-opening because when you're living it, you just sort of... survive it. You get through the night, get through the next day and then do it all again. Seeing it written down night after night has made me realise just how much sleep we're actually losing and how much nighttime care we're providing.

And the maddest part is that morning still comes regardless. Life doesn't stop because you've been awake half the bloody night. Raylen still needs the same level of care the following day, and somehow my husband and I still have to function.

I don't really post this for sympathy. I just think sometimes when I say "my son struggles with sleep", those few words don't come close to explaining what that actually means for him or for us as a family.

Anyway, it's now nearly 5am ( when I first wrote this post for my personal Facebook profile ), so if anyone needs me, apparently I'm working the night shift. 😂😭

Hopefully our little man manages to get some sleep soon, cause my arse is exhausted.