The straw that broke the camel’s back….

Nothing quite like the force of a full-on flu to bring you horizontal, what a week.. no actually … what a year! I think Maur and I have been running on adrenalin for so long now, we’ve been balancing on the precipice week after week… our days are full with therapies, and our nights seem even more so… with a little cherub who does not sleep.

It’s funny, the warning signs kept coming.. every time we’d meet a new specialist for Chiara, we’d give the background and let them know what we’re doing etc, and the first response we get is “are you guys okay???” then the following response is usually of concern on how intense the home-program is and how they have seen families unable to sustain it, and thus fall apart”… we explain we have some family who help us out etc etc… and quickly try and get the focus back on Chiara… I understand it’s of genuine concern, as these specialists have often been working in the special needs world for years, they see a lot… we are newbies to this foreign special needs world…

Alas, this family needs sleep, good solid consistent rest – and a lot of it!! We missed the sleep study at Monash Hospital this week, so hopefully we’ll get in soon and get to the bottom of the wakeful nights. A lot of muma’s of kids with Polymicrogyria medicate their kids to sleep (with Melatonin), they have no choice, these kids are often wired differently and I have been warned that general inability to sleep and unsettled nights comes with the ‘brain injury’ territory . We’ll cross that bridge soon with the sleep study, but one thing is for sure we cannot sustain the current set-up at nights. More importantly, Chiara herself needs rest, for a million reasons. Fingers crossed.

A very big heartfelt thank you to two very special ladies, Nanna and Nonna.. who have helped us a lot over the past week. So much gratitude to these beautiful women, who have such a gift (baby whisper’s) when it comes to settling Chiara, she responds to their love so well. For us, she’s a little rebel, but for them she’s a little angel who sleeps a full night through without a peep, yes Mauro and I feel like there is some cosmic joke being played on us….. ah, you gotta laugh or you cry!

2 Comments »

  1. Nat again a beautifully written blog and one that hit me hard! I can relate to so many things, emotions and experiences and it brings me back to some of our hardest times. Sleep is so vital and so hard to achieve with our kids! Hang in there, look after yourself and hold tight to those loved ones around you. I’m here if you ever need anything or just vent. I get it. You’re amazing. X

    • Beth thank you – only another PMG muma can truly understand 😉 Crazy days… i’ll keep you posted with the sleep study. Big love to you and your beautiful family xx

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