We have already spent many hours trying to settle a very unsettled little poppet. Earlier on, I had woken to her muffled intense cries to find her in the cot with her hand stuck in between her teeth.. Grace wakes up and runs down to Chiara’s bedroom and starts crying seeing Chiara so distressed… “no Chiara, don’t bite your fingers.. please…”
The force in which Chiara’s jaw clamps down is scary.. especially given it can’t release…and the worst part of all is there is nothing we can do.. but to wait for it to pass, try to distract her whilst trying to remain calm. It’s a symptom of the Cerebral Palsy and one that gets all of our hearts racing, especially Chiara’s. We are currently looking into gloves and other options to help in the interim.
Chiara has woken again, the clock is ticking past 12am.. Maur and I take turns in holding her and walking all around the house… her body thrashes about… the weight and position of the cast is awkward to manage… she can easily flip out of your arms if you don’t have a firm hold of her, as her back muscles haven’t developed to hold her in an upright position….. Grace has woken up again to the sounds of her little sister crying…
Naturally…. waking and crying babies are part and parcel of parenthood, we know this already from our other little girl Grace. But Chiara comes with another level of intensity, her cries when distressed, are actually more like screams.. its not just the usual “unsettled” behaviour… it’s the same intense cry as when she gets a new cast at RCH, the same cry as the tendon release operation, the same cry as when she is in the car-seat….it’s harrowing and we feel helpless…
It’s now around 1am… Chiara’s cries are moving an octave higher every time. We call the home visiting doctor, they are fully booked. We talk through the logistics of possibly taking her to the hospital. We were both so worried, and both so very exhausted…. as this has come off the back of weeks of sleepless nights. We’ve already hit the medicine cabinet, both conventional and alternative options…. alas nothing is working to help relax Chiara.
In the middle of this madness, trying to figure out why she is in so much pain.. is it the cast that is hurting her? Is it her cerebral palsy and the bite reflex? Is it the food she ate? Is it her gut and it’s inability to assimilate certain foods? Is it teething?
2am… time is an interesting thing. The hours prior to midnight seem so manageable, but once that clocks move’s in the wee hours.. things feel intense, eyelids grow heavy, we start to feel wired.. and then the clock seems to slow down.. every second feels like at eternity.. our bodies sending us so many messages to sleep, sleep, sleep.. yet the adrenals are working over-time and we are pushing through…
3am.. I run the bath, and jump in with Chiara who is still so distressed. Grace has woken up again. Maur & Grace sit on the floor, while we all try and sing and coo and ahhh to settle Chiara. We decide to soak off the cast, the advice from the RCH was if it had slipped, or we felt it was causing her pain to remove it immediately. So I unravelled the outer bandage, to begin soaking off the cast. My mind drifts off to ancient Egyptian times.. the mummifying process… then I think of Cleopatra.. I wonder if Chiara has any past life experience in ancient Egypt? Ah the randomness of thoughts at 3am! I unravel the bandage from her leg… Chiara is crying that intense cry the whole time.. and finally her little leg is free….
And there it is.. about 3.30am.. a faint hint of a smile from Chiara…
4am we are out of the bath and I’ve got every “calming” essential oil I can think of and begin to massage her little body. In between all this we are trying to get Grace back to sleep, so she rest as much as possible. We have a big day ahead of specialist appointments at RCH… so we all needed to rest to gather some energy for the daylights hours ahead….
4.30am zzzzzzz Chiara is finally asleep, in such a deep sleep she is actually snoring. Bless her.
Mauro and I look at each other, completely depleted. We know this space all too well… we smile at each other.. by this stage I have a few tears rolling down my face.. you really have to laugh or you do cry!! 😉 So we try and get a few hours rest in before the sun light appears!
Over the past 18 months.. it has been rare for us to get a solid nights sleep. I recall at the time of Chiara’s initial diagnosis, being told by a genetic doctor that disrupted sleep comes with the territory of brain injury. There’s not a lot we can do about it, unless we want to medicate her.. but even then its complicated – as there is a risk of triggering a seizure(s)….
7am Chiara is awake… the day must begin… exhausted is an understatement.
We have little energy, little sleep.. but we have BIG love.. for these little angels named Chiara and Grace xo
Here’s some info on sleep form “Friends of Zara FB Page. How ironic is the last study!!!!!!!!!!!!!!!! Scary indeed!!!!
– losing brain tissue. A small, recent study of 150, published in the journal SLEEP, found that just one night of sleep deprivation was linked with signs of brain tissue loss, measured by blood levels of two brain molecules that usually increase after brain damage.
– more likely to get emotional. One 2007 study from researchers at the University of California, Berkeley and Harvard Medical School used functioning Magnetic Resonance Imaging to show that after sleep deprivation, the brain’s emotional centers were more than 60 percent more reactive. “It’s almost as though, without sleep, the brain had reverted back to more primitive patterns of activity, in that it was unable to put emotional experiences into context and produce controlled, appropriate responses,” senior author Matthew Walker, director of UC Berkeley’s Sleep and Neuroimaging Laboratory, said in a statement. “Emotionally, you’re not on a level playing field.”
– less focused and having memory problems. Being exhausted zaps your focus, and can render you more forgetful (no wonder you keep misplacing your cell phone after a bad night between the sheets). On top of that, sleep is thought to be involved in the process of memory consolidation, according to Harvard, which means shortchanging it can make it more difficult to learn and retain new things.
– stroke risk quadruples. Research presented at the SLEEP 2012 conference suggested that getting fewer than six hours a night can ratchet up stroke risk for middle- and older-aged people. “These people sleeping less than six hours had a four times increased risk of experiencing these stroke symptoms compared to their normal weight counterparts that were getting seven to eight hours,” study researcher Megan Ruiter, of the University of Alabama at Birmingham, told HuffPost at the time.