We share a similar Journey.

Posted by Danica Quabba on

In honour of purple month I had the honour of asking a beautiful friend to share their journey with epilepsy.

Erin and I connected last year when I read about Luella’s journey through their Instagram page. It really hit home what they were going through and instantly I knew I had to reach out. Have a read below of Erin, Dave and Luella’s journey navigating the waters of complex medical diagnoses.

The Medicalised Mumma x

When The Medicalised Mumma approached me to write a piece on raising a child with special needs, I immediately said yes! Eager to share a raw insight to what life is really like, unfiltered.

But where to start..? There is SO much to unpack, that it felt somewhat daunting.

My 17mo daughter has refractory epilepsy, specifically Infantile Spasms, diagnosed at 11weeks of age. Spending much of her first year of life in and out of hospital, falling deep into a web of emotional destruction for my husband and I, and physical destruction for her. We have tried and failed almost 15 anti epileptic drugs, most of which only made her worse. She has global developmental delay and at almost 1.5yo cannot crawl, stand or walk, and is non verbal.
Luckily I have found relief for her through CBD oil, reducing her spasms from over 250 a day to under 50. It sadly isn’t yet a cure, so I vigilantly continue the search.

Our life is brutal. There is no other word for it. There is nothing more cruel in the world than minute after minute watching your child suffer. And in no way able to fix it.
It is utterly excruciating. No words quite fitting enough to accurately describe it.
If you’re reading this and standing in the same pair of shitty shoes, no one quite understands. And devastatingly won’t ever. A medical diagnosis of your child can be extremely isolating.

It pains me to say that our experience into the this medicalised world, to date, has not been a good one. Drs too often dismissing my maternal instincts, casting it aside so flippantly, like I actually didn’t even have a child of my own. Like they knew her better.

So, as I thought about what to share, it felt poignant to discuss three key things that I wish I’d listened to from day one.

Instincts. Advocation. Knowledge.

I can’t stress how important advocating for your child is. But mostly, when that moment your gut instinct kicks at you, hard, and you just KNOW to your core something is wrong.

But what about, like me, when you first notice something is up and second guess yourself?
I first noticed something wasn’t quite right with Luella about 8 weeks of age. But instead of listening to my gut, I let others convince me I was over reacting.
As a first time mother, I fell into PND very quickly and didn’t cope with the sleepless nights and this constant demand of another person. It felt relentless. In retrospect, I wish I had sought help much sooner. I find the Special Needs world one I so desperately wish I wasn’t a part of, and the multifaceted grief that comes with this is extremely overwhelming for me. I currently take an antidepressant as well as CBD to help.

The biggest take home piece of info I’d love someone in similar shoes to have, are these three:

Listen to your gut. Not the emotion tidal wave that’s running wild with everything you have going on. But that deep rooted knowing. It will guide you and more often than not prove right.
In medical situations like ours, too often parents forget they have the right of refusal, or to ask for an alternative, be it a medical professional or treatment. Drs may know medicine best, but they don’t know your child best. YOU do.

Advocate hard, and have the courage to say NO if something doesn’t sit right. If you see a change in your child for the negative it’s important to firmly speak up and question, question, question. Many children can’t speak for themselves so it’s imperative you take control of this.

Do your research and become as educated as you can on the diagnosis in front of you. In doing so you will challenge your specialists, no doubt annoying them to the nth degree. But, knowledge is power. So be power-full.

At the beginning of our journey into this purple world of epilepsy, we were conditioned to trust in what we were being told by Drs, only to find my daughter, at one point on six anti epileptics at once and going into tonic seizures - which is not her norm, and being told there was nothing else Drs could do for her.
This was the point I took back control of my daughters health and went against Drs recommendations, and tried CBD oil. It took us eight months and about twelve different oils to find relief. As a result I’ve achieved more for her than any Dr so far. She went from almost vegetative, to rolling, sitting independently and off her NG tube within three short months. She recently also took her first assisted steps through early intervention.

What I’ve written doesn’t suggest firing your Drs and going rogue. I’m not recommending removing medical care. I’m simply pointing out that ultimately parent knows their child best and listening to that is the prime and strongest advice I wish I had of been given, at the start of this awful journey.

You’ll never fight as hard for anything in your life, it’s completely depleting of self.
So let that lioness or lion roar and fight for them the way you’d want to be fought for.
Because, they only have you.

And you are everything.

Kind regards,

Erin

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