When you are powerless

Final Vida&Sienna (23)When I first started this blog I was fairly anonymous. My husband was a professional sportsman, I just had my second child and I was often home alone somewhere in Australia that wasn’t actually home. It was a transient and yet very interesting life; we met some great friends and effectively created for ourselves a second family wherever we went.

But despite being a busy mum, I had time to ponder. And write through my pondering. It was around this time that Mamma’s Vida was born and I really enjoyed blogging regularly; about my life, the people I met, my hopes, my dreams, my failings. Such is a “Mamma’s Vida”, which means, as you may well know, “Mum’s Life.” A Mum’s life is all the emotions and I took great joy in writing about them honestly and frankly, with really only strangers listening.

Things have changed somewhat since then. Not only are my babies now school-aged children but I run a business with my husband. It’s full on and full time. And living in Cairns, well, life isn’t so anonymous anymore. For a Sydney girl, it’s a teeny tiny town. Everyone knows everyone, and everyone knows everyone’s business and therefore blogging hopes, dreams, experiences et al goes down a little differently round these parts.

And so blogging for me has become a rarity. But now and again I still feel passionately enough about something to make it public and interestingly – but not surprisingly – it almost always involves my family.

And today’s post is about the most amazing, strong, resilient, brave, enigmatic, vibrant and charismatic child there is and her name is Sienna Caravella and she is my firstborn. And last night, Sienna spent the 20th or so time in hospital since she was diagnosed with Cyclical Vomiting Syndrome, a condition that means that once triggered, she won’t stop vomiting for 20 or so hours. In a row. Without a break.

And 20 hours is a good day. Once she was vomiting for 72 hours straight because the fuckers at the hospital gave her the incorrect infusion, despite me telling them to check her history. 3 days, no eating, no drinking, and according to the drip that’s supposed to fix her, hardly any glucose. She looked lifeless – aside from the bursts of vomiting that continued to happen even through her lethargy.

Do you even know what happens after that 100th vomit? Forget bile, it’s far worse. She vomits brown gastric juices. Anything her body can muster up it will. Because it goes well beyond food, and well beyond bile. It’s a wretch that sounds painful, aggressive and it’s a sound you will never forget.

So once a month or so, Sienna gets hospitalised.

It’s like that now; our new normal. So 3 hours into her vomiting, we have a management plan that allows her swift entry into the hospital, numbing cream on her vein areas, a cannula inserted (sometimes by a student doctor, who fucks around long enough to make her cry in agony) and the drip connected.

And we wait.

Because now, two years into this condition, she’s got a tolerance to anti-nausea medication, the most effective one being Ondansetron, and despite her dosage doubling she might as well eat a jelly bean instead.

And so we wait. Until the vomiting subsides and the dextrose saline mixture does it’s job and she falls asleep.

It is after an hour of silence in the hospital room that I know she might have fallen asleep for the night. Depending on when she first started vomiting, we know that 20 hours later she will have done her last vomit. Sometimes it’s earlier and sometimes it’s later.

Cyclical vomiting is known to have almost classic symptoms with each episode. With Sienna this is no different; each episode is almost identical, except the trigger bit. We don’t know the trigger and that’s what breaks our souls. If I knew the trigger I would do anything to stop it happening.

Amazingly, after nearly a whole day of vomiting and solid night on the drip, Sienna almost always wakes up in the morning bright as a button. The night nurse that first saw her late the night before dehydrated, weary and mute then meets the real Sienna in the morning; chatty, rosy cheeked, warm and happy. Sienna then asks for toast with honey and as much apple juice as they can find.

And when I wake myself, feeling like I’d been hit by a mack truck after a combined one hour sleep that involved nursing my child, hospital lights, noise and the loud beep of the drip machine alarming for it to be reset, I look at Sienna and I feel relief.

Because she’s back.

Over the last two years I have done everything in my power to help find a fix for my child. I have seen naturopaths, I’ve seen several specialists, I’ve googled until there are no google pages left and damn you know how many google pages there are.

I feel powerless, and as a parent, there is no worse feeling. Because this morning she didn’t wake up bright as a button. She woke up sad.

Why do I have to come to hospital all the time Mum? She asked.

I want to go learn with my friends at school. She said, through tears.

And then she started to sob, I miss Vida.

I know Cyclical Vomiting Syndrome isn’t the worst thing that can happen to a child and I’m aware children are suffering from greater, more life threatening illnesses every day. But my heart still breaks when I see that potent dextrose go through her tiny, seven year old veins each month and as her Mum I just want to fix it.

Hopefully it fixes itself one day and my daughter can carry on being a normal child. One that her parents can take travelling without worrying about the hospitals or the language barrier or one that can get mildly sick without it turning into a whole day and night of physical torture.

I’ve always said this and I mean it to be true: Parenting is glorious and for me, the greatest and most beautiful thing I will ever do. But damn. It’s heartbreaking sometimes.

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