Less than 1%

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This post has been sitting in my drafts folder for a few months now. I’ve re-written it over and over, deleted it and started again. I’m still wondering if this is something that i’m ready to talk about but if there’s any day to do it, it’s today, right?

Are you okay?

If you’d asked me that a few months ago, or last week even, chances are i’d scream out a bit fat no. Today though, i’m pretty okay.

Now if i’m completely honest with you, on the days when i’m not okay I struggle to get out of bed each morning and I count down the hours and minutes until it’s bed time again. I find myself sitting in my pyjamas at 3:00pm wondering “what the fuck” or on my 5th cup of coffee at 11:00am I remember that I haven’t showered yet and I drag my ass into the bathroom and hope to god Olivia stays asleep until I get out.

Those are the days i’m not okay.

Every day my head is a big weird cloudy mess of mixed emotions, to-do lists, deadlines and washing baskets. That’s totally normal as a new Mum, a parent; I get it.

However, some days I feel like i’m busting at the seams and here’s why.

When Olivia was only a few weeks old, she was diagnosed with a rare chromosomal genetic disorder, which affects almost every part of her body in one way or another. The severity of her condition varies between each person so knowing what comes next is a almost a complete mystery… a waiting game. It’s not something that can be cured, it’s not something that will go away with time, it’s here to stay for good. It’s also not something you would know about just yet, unless I told you. 

I’ve lost count of the amount of blood tests she’s had and how many times she’s been poked and prodded. She’s had multiple ultrasounds on her little body, there’s been eye specialists, geneticists, paediatric cardiologists, hearing specialists, endocrinologists, the list goes on. There’s regular monitoring required for her thyroid function, heart, eyes, hearing, weight gain, height and mental development.. this list also goes on. On a scale of how good to bad her condition could potentially be, she’s pretty damn good according to her geneticist

At only a few months old, her arms already seem to have permanent bruises from the blood tests. She’s sensitive about her face being touched because of one extremely traumatic experience at the eye specialist. Her body has difficulty moving fluid around in her hands and feet causing swelling and “puffiness” so we have to be extra mindful of the clothes she wears, no footed onesies, tight socks or cute shoes for this gal. Then there’s the severe reflux causing difficulties with her feeding and sleeping. Almost nothing stays down in her belly, it comes up eventually and our poor washing machine is having a run for it’s money. #ThankGodForBibs

Daily thoughts can sometimes go a little like this..

Why isn’t she doing this yet?
What’s the next appointment again?
Who do I have to call and what do I have to book in?
Have I sorted all her paperwork, where did those results go?
Why isn’t she feeding properly today?
She bought up all her food, again.
We have no clean bibs left, fuck.
She hasn’t slept all day.
Why is she screaming like that?

Blah blah blah.

Can you see now why my head is so full all the time? This is why some days i’m not okay. It’s exhausting, but it doesn’t take up all of my head space, just a big chunk of it.

Let me make this clear now. In no way has this ever been, or ever will be inconvenient for us. Everyone goes through their own struggles in life, we just now know what we’re in for ahead of time.

She is not her diagnosis, she is Olivia, and Olivia is smart, determined and otherwise a healthy, cheeky happy 8 month old baby. She has the most beautiful brown eyes, the longest eyelashes i’ve ever seen (thanks to her Daddy) and the craziest hair. We took her to the other side of the world for three weeks before she was 5 months old. She loves animals and would eat every plant in our house if we let her. She’s a fighter, a goer and we wouldn’t change her for the world. We want her to grow up with a sense of adventure, an understanding that life is short, things are unpredictable and to take each day as it comes.

Never in my wildest dreams did I ever think something like this would happen to our little family, but it did and i’m a big believer in everything happens for a reason. There’s a reason why Olivia chose to be here with us, there’s a reason why we’ve been thrown this curve ball, if that’s what you want to call it. She’s here to teach us something, to guide us through this season of our lives and we’re learning each and every day how to cope and enjoy every moment as best we can.

After her diagnosis we also learnt that with her condition, her chances of survival in utero were less than 1%.

Yup. Less than 1%.

We had no idea about any of this prior to her diagnosis and if I had ignored my “gut feeling” that something was wrong when I was pregnant, god knows where we would be right now.

I’m still pinching myself over that thought. She’s our miracle and everything happens for a reason. So on the bad days, when it’s not okay, I do my best to remind myself to be grateful, happy and thankful.

Are you okay?

It’s okay, to not be okay. It’s okay to ask for help, to yell, scream and cry if that’s what you need to do. Start the conversation and talk to each other. Here I am, talking you, about what’s behind the day’s when i’m not okay. Your turn.

https://www.ruok.org.au/how-to-ask

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  1. […] followed me for a while, or you’ve read some of my personal blog posts in the past, (here and here and here) you’ll be familiar with my journey and fumbles with parenthood and post […]

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