Yep – this picture sum’s up the past two years!
Funambulism! the art of walking along a thin wire or rope. Not surprising that it’s commonly associated with the circus, which could be an analogy for our parenting gig this time around 😉
Balance: an even distribution of weight enabling someone or something to remain upright and steady.
We’ve been walking a fine line, trying to keep our balance since we first walked through the doors at Royal Children’s Hospital, with our 10 day old baby. Only to find we’d be returning over 200 times in the years to follow.
- We would be back and forth to Orthopedic’s for Chiara’s clubfoot treatment, which involved over 20 casts, a tenotomy operation, multiple splints, boots and bar and x-rays.
- We would visit Speech Pathology with our 6 month old baby with concerns due to a few chocking episodes, and lack of breathing properly in the middle of the night
- We would have a few brain ultra sounds not long after the birth of Chiara which began to raise concern
- We would meet with the Genetic team to discuss possible concerns around her head size
- We would check in with Neurology for a brain MRI scan with Chiara sedated in order to keep still for the procedure
- We would attend sleep studies at Monash Children’s for a change of scenery 😉
- We would attend multiple EEG tests with Chiara’s head hooked up to a collection of rainbow wires and beeping machines
- We would rush off to emergency numerous times with possible seizure concerns
- We would be admitted numerous times for Chiara and wake to the sounds of beeping machines and various testing devices
- We would be back and forth to Pathology getting loads of blood tests
- We would spend a lot of time in the respite room and I would quietly find some solace in the Prayer room
- We would attend the unsettled babies clinic, only to walk out with a label for mum this time ‘post natal depression’
- We would get as far as the lifts before I would break down and cry
- We would walk the many long hallways looking at other severely disabled children and wonder if that’s what lay ahead?
With so many hospital visits for Chiara, specialist appointments, invasive tests and procedures, long and stressful car rides, packing, unpacking, no option for establishing a sleep routine due to the chaotic schedule, waking up to the muffled screams when Chiara would bite down on her finger and not be able to release it (for what felt like an eternity), the constant lack of sleep – all morphed together to make life a constant blur.
So if you imagine this same guy in the picture below taking his next step, however this time he trips over and slips, but he manages to catch hold of the rope and hold on, with his body suspended in mid-air. That’s kind of how it feels when you lose balance. You fall over but you manage to hold on, maybe just with the very tips of your fingers, but you’re holding on all the same, holding on for dear life. Exhilarating as it is, give me the grounded option anytime thank you 😉
I’m sharing this mostly for other parents who are in the thick of it, who are exhausted, depleted and full of worry for their child. There are so many stages a special needs parents goes through, and losing our balance is definitely one of them. Balance – as mentioned earlier, refers to the even distribution of weight. Then how can you possibly find balance when your child’s health concerns, suddenly tip the scales?
I don’t believe the special needs parent ever truly “get’s over it”, rather “they get on with it” in a thousands different ways and their reactions varying on different days. But they get with on it and that’s what matters most. To the special needs parent who has suffered yet overcome great hurdles with their children – I have great reverence for you. Whilst I believe that on some quantum reality there are deeper meanings for why children arrive with special needs, like being told that ‘she chose you as her parent’, ‘it’s part of the karmic laws‘,’she chose to enter the world with such physical limitations‘,’she’s come to help you on your dharma‘, ‘she’s come to heal others’, ‘through her limitations we find our liberation’,’God does not give you what you can’t handle’ etc etc. But with all those sage insights, still does not take away from the simple fact, that it is painful to watch your child suffer (and in some cases it’s a daily occurrence) maybe waiting for a seizure to end or limb to relax after hours of contraction or a fever to subside. But we do, what we do, with great love and that alone has the power to transform the most roughest of hours.
Some days I think I’ve got it sorted, that come what may, I’ve got this. But in those random moments, like this morning at Grace’s dance class, I still feel the pinch. Chiara’s body was resting on my lap and my hands were firmly supporting her shoulders to keep her in balance, otherwise she would have simply rolled off my lap and directly into the floor. And if she were to fall that short distance, her primal reflexes wouldn’t kick in to protect her. Her brain-injury has impacted some of the earliest stages of brain development, hindering her ability for basic safety.
She is so very vulnerable, like a newborn bird sitting in the nest, unable to fly and completely reliant on the mother/father. I looked around at the dance group, locked eyes with Grace a few times, gently nodding and smiling at her, to give her extra encouragement as she floated across the dance floor. Chiara must of felt the pang in my heart and in that moment, turned her head to look up at me and beam her reassuring smile. With that, I felt a tear drop roll down my cheek. I closed my eyes for a few seconds to brace for the emotions I was experiencing.
My beautiful little Chiara, I wish nothing more than a healthy and happy life for you.
I thought about the incredible conversations that I have with Grace, each night before she falls asleep she nestles into my body and demands “arm in there!”, which she has been saying to me since she was around 1 and a half years old. Bless. Grace has been falling asleep with my arm around her for many years. We’ve had a rolling conversation about all things magical and mystical, she is indeed a wise old soul. I can’t help but wonder what conversations I may miss out on with Chiara, I long to hear her voice and most of all listen to what she has to say. Already without a voice, she has so powerfully conveyed so many messages to myself and to the masses. But I treasure the exchange of words and wonderment that I have with Grace and naturally I’d love the same with Chiara….
But for now I continue to find my balance somewhere in between these two brilliant little angels…
called Chiara and Grace.