Mini miracles! 🌈
Both Mauro and I cannot wipe the smile from our faces, for the first time EVER Chiara has travelled peacefully in her car-seat, all the way into the city and back. An all time record for us! Since our return from America, we have noticed some pretty exciting changes in her overall tone and rigidity from the Cerebral Palsy (CP); the main change being that her body has softened, providing a lot more scope for mobility. Given she has quite a severe case of CP (Qaudriparetic: all 4 limbs are affected), simple things like sitting in a car-seat have been a major cause of stress, pain and trauma for her. Her limbs generally cease up and her entire body forces into extension making it near impossible to bend at the hips into flexion.
We have had the early intervention team, doctors, physio’s, experts in child disability transport all try to help to unlock the mystery, but for over a year we have had no luck. Our only option in the end was to try some very strong medication to try and relax her body, which had adverse side effects so we stopped it immediately. It’s been a crazy ride, literally. Having to attend 100’s of specialist appointments all over Melbourne made every drive pretty much unbearable. She would scream the entire car ride and when I say scream, I mean the harrowing type like something was seriously wrong. It wasn’t just the crying, her physical reactions were frightening.
Every red-light traffic signal felt like an eternity and my stress levels were beyond normal. It was a nightmare. I’d rock up to appointments completely frazzled and I can’t imagine how she must have felt.
We would have to pull over on the side of the road (rain, hail or shine) and try to calm her down, only to get back in the car to have her absolutely lose it again. Often she would have severe issues in trying to breath which would send my heart racing.
I recall driving back from Monash Hospital, where I looked in the rearview mirror to find her covered in blood. She had bitten down on her fingers so strongly, I pulled over in peak hour traffic trying to calm her down (now both of us in tears) and would wait hours sometimes before I attempted to jump back in the car. Cerebral Palsy can cause chaos in these little precious bodies and if only I could locate the Cerebral Palsy ‘off’ button, so Chiara could free herself from the huge limitations the CP creates in her physical form.
So we kept travel to the minimum which was almost impossible due to the high frequency of specialist appointments we had weekly. Social outings were effected, I wasn’t able to visit friends or family across town with the girls so became a little frustrating..
Anyhow, you get the drift…. intense times…
So HELLO, the sense of ease and freedom that we all felt today was AMAZING! Ah, who would of thought we’d find so much JOY in something so simple as a car-ride.
Aside from the chillaxing in the car now, Chiara seems so much more settled in her body. Although she is unable to sit independently yet, she is able to remain centred and balanced for longer periods. Check her out on the rocker, look mum no hands! And speaking of hands, she has started to make the connection between her hands and mouth, trying to bring food to her mouth and using a spoon, not fully functioning yet but the intent is there so hopefully a sign of things to come. I must admit there have been times feeding Chiara that I have wondered if I’d be doing this for the rest of my life, and when I left my body, then who else would help feed her?… those future what if’s have sent shivers down my spine many a time and feeding has been the least of my future worries.
So it’s absolute magic to watch her little body unfold and piece itself together.. slowly slowly..
We still have a massive journey ahead, but there is a renewed sense of HOPE in our family. Today, as I sat back watching a little boy (younger than Chiara) kick a soccer ball in the park, I smiled and held onto the image in my mind of little Chiara running free.. laughing.. and even talking…
I dare to dream… BIG!