The Yin To My Yang: Parenting A Medically Fragile Child

This blog post is dedicated to my husband Mauro, he coined the phrase “you’re the yin to my yang”, I loved it and told him I’d write a blog about it, so here tis’…

My husband is quite a private man, unlike his wife who shares her heart and soul through this blog. He’s not so fussed with social media, and barley checks his emails. He can go weeks without turning on his mobile phone (which can be kind of frustrating!). But you will never find him with his head buried down into a smart phone at the local park, while the kids are playing. Nope, not this guy, he is honestly one of the last Mohican’s who is not distracted by the cyber world of social media.

I have to laugh as unbeknownst to him he holds a few yogic traits, he didn’t go to any yoga classes or study to become a yoga teacher either! He doesn’t really get too attached to anything, he is present in the moment and seldom gets pulled into the drama’s of life. But when the need arises, the bull charges with force – a true taurean! Like my daughter Chiara.

He likes the quiet life, and he loves his girls.

People often ask us how we cope with having a child with a disability and I think the following really sum’s us both up on how we approach this special needs gig.

 

We were on the way home from hospital visit #207. We were running on pretty much no sleep, the drive into the hospital was a long and challenging one, dealing with Chiara’s screams and discomfort, Grace’s throw-down because she really wanted to go to the zoo instead, and me sitting in the backseat starting to get car-sick. But we made into  The Royal Children’s Hospital (‘No Grace, we’re not going to the The Royal Melbourne Zoo’), managed to get a good car-park and the wind pretty much blew us into the front revolving door. There is a huge wind-tunnel as you enter the Royal Children’s, it cracks me up every time. It makes you look wild, as if the drive alone wasn’t enough to rattle you, they like to give you a grand entrance!

We checked ourselves in for the first appointment, which got mixed up, so we had to wait another few hours, by that stage we were running late for the next appointment, in another department, at the other end of the hospital. Great. Then Chiara decided to choose this exact moment to explode her nappy all over me, yep #2. I had no wipes in my nappy bag, and no change of clothes for her. Didn’t I just pack her bag last night? Oh yeh, that’s right Grace needed some clothes to dress her doll in…

Trying to change a poo nappy (poonami) that has exploded, well more like imploded up behind her back and throughout every item of clothing she was wearing, then somehow over random parts of my dress, is a challenge in and of itself. Now, I’d like you to add to the mix, a child who is heavy, unable to sit and who’s leg’s cross over one another in a tight lock due to the cerebral palsy.

It’s a mental and physical challenge, and one that on the back of no sleep, no breakfast, feeling a tad seedy from the car ride, is one that I DO NOT want to partake in. No thanks, not in this moment.

So some random lady offers me her wipes, Mauro and I attend the bathroom together rallying for Grace to come too, we can’t just leave her playing on her own. She was now horrified that not only did we drag her to the hospital (and not the zoo!), now we were telling her to come to the bathroom, where we would all be confined in a small space, just like the car, yet this time it would smell pretty bad and mum and dad would be stressing over who had more shit on their hands, or clothes. I swear that stuff hides in the most random places, under your nails or something because even after washing your hands seven times, the smell haunts you for the rest of the day…

So as a team, we managed to change Chiara’s nappy. We managed to unlock her legs so we could clean away the necessary areas, and then wrap her in Grace’s cardigan, did I mention that I forgot to pack a spare set of clothes? Well, I did, but a little red-head had unpacked them the night before, and anyway…

The Royal Children's Hospital

Okay, so we manage to get through three appointments. One about her clubfoot, the other about potential medication to treat her cerebral palsy and the next, to the genetic department who gave us an approx life expectancy based on her multitude of diagnosis.

So, you get the gist, not one of the most inspiring days out, but we roll with it. We get home, after a crazily intense car-trip, it’s raining like mad, we all get drenched making our way up the front steps, which on stressful days look more like one steep mountain! I make a few trips back and forth from the car to unload, then arrive in the house.

It’s about 6pm now, we’re cold, tired and hungry. I draw a bath, hot water run’s out. I stub my toe on the walking frame, or was it the standing frame? or was it the wheelchair? Or was it the table? I’m not sure, but I was just about to lose my shit by this stage! Tired, emotional mama.

UNTIL, I burst into tears. I said to Mauro “F I wish I had your patience”, – I really wish I had your patience. To which he quickly replied “Well Natalie, I wish I had your drive, I really wish I had your drive and determination”.

AND there it was – our Yin and Yang!

That is exactly how we both approach this new special needs parenting gig. Mauro brings a consistent energy of patience to the table, and I bring a consistent energy of drive to the table. Together, we get through our days, poo and all!

In my short time being a Mother to a brain-injured child, I have learnt that these two attributes put you in good stead to manage whatever comes your way.

So with a little bit of patience and drive, together we will provide some awesome things for not only Chiara, but our little Grace!

And yes Grace, we promise to go to the zoo!

What have been some of your eventful special needs parenting situations? Leave a comment, I’d love to hear from you.

Natalie_Signoff

2017-09-20T23:32:49+00:00

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