A day in the life of Chiara (on a not so good day)

In a recent post I outlined ‘A Day In the Life of Chiara & co.’ which gave an outline of all the therapeutic activities we do in a day, providing all goes to plan… but life is not always so smooth and predictable… so here is a snippet of the other days.. where her special-needs really put an imprint into the day-to-day challenges…

These are the days where I wish I could locate the ‘off’ switch to her Cerebral Palsy, where the rigidity and strong tone causes chaos through her little body. The days where she hasn’t slept well, waking every half hour all through the night, where she is so tired that her brain messages get muddled up and her jaw clamps down on her fingers so tight and refuses to release or even worse when her jaw locks down on her tongue and blood oozes out.. or where her limbs move in the opposite direction as she tries to pick up a toy, or where her head becomes so floppy she struggles to keep herself upright…

The days where we have multiple hospital appointments on the back of no sleep, where she screams her little heart out in the car-seat, during the medical procedures and all the way home, where she is in so much pain due to gut issues associated with her lack of mobility.. where she can’t tolerate any time playtime on the floor.. and gets frustrated that her body won’t support her to crawl or sit…

When we lower Chiara to the floor for some tummy-time, her arms don’t’ naturally move forward to protect her face (this reflex has’t switched on yet), so as we lower her down, we need to act as her arms, and help to move them in front of her so she doesn’t face-plant into the ground. And with the strong tone from the CP, it’s not as easy as it sounds… her shoulder-girdle is so stiff.. the repetition of placing Chiara in certain positions takes it toll on our backs, and she’s only 9 kilo’s.  Due to the tone from the CP, she pushes her body weight back suddenly and forcefully, so you need constant resistance to support her in your arms when this tone kicks in. How on earth do parents cope with older/heavier immobile children? I guess that’s where the special-needs equipment takes over, but I hope we can avoid this outcome for her…

Chiara by nature, is such a content, peaceful and happy soul… it’s just that the CP, or other developmental issues get in the way.. creating some discomfort for her… but with all that said.. she is a remarkable little being.. she has such a strength and determination in her.. the little strong Taurean.. she’s tough… and her will and purposeful actions.. tell me she isn’t going to give up without a fight… she has a will about her.. that I hope will defy a lot of the odd’s that are working against her…

Raising a special-needs bub’s, as opposed to a neurotypical child, is poles apart. I know this first hand from experience… the past year has been crazily full-on, and we’re only just coming up for air now. It’s been demanding both physically, financially, emotionally… some of the hospital visits (over 100 of them now) have been exhausting, most of all because it breaks our hearts watching her suffer… her bottom lip drops, and her tears flow…

But we always get the re-frame when we visit the RCH.. there are little children with far greater challenges… so we keep counting our rainbows and not our thunderstorms…

On this particular RCH visit I bumped into an old school friend Belinda who was working there, such a small world indeed. Mauro and I have this saying.. that when we bump into people by coincidence.. it means we’re on the right track! Synchronicity – have a little read of this link here (www.positivelypositive.com/2012/05/23/coincidence-i-think-not-youre-on-the-right-path).

Life and the Universe have a funny way of bringing us to the exact people, places, circumstances, and messages that our souls are calling for at the right time… 

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