Mamma of a Warrior

When I was expecting my eldest child many moons ago I had no expectations beyond a healthy baby. It never for a second even crossed my mind that she would be born with additional needs, disabilities or serious health conditions. Not once. Yet, there I was barely out of my teens with a baby born fighting for her life.

I was so far out of my depth I think I was in shock. I had doctors, nurses, psychologists all telling me I “would get post natal depression because I was young and my baby was in special care and I wasn’t expecting this” I always insisted the same thing “don’t judge me by my situation”. Their determination that I would get PND became my determination to absolutely take control of our situation and I wouldn’t just cope I would flourish alongside my baby!

That mindset saw me through the darkest of early days, where the medical teams were telling me they couldn’t give a prognosis, telling me in reality it was amazing she had survived to birth, to have her birth registered as quick as I could arrange it etc etc … that mindset that saw me through is still with me today 20 years later. So while I think the professionals went about it the wrong way, I would thank them for that because it made me grow a backbone very, very fast.

I’m not going to lie, the early days were seriously hard, my baby was fighting for her life & every single hour of every one of those days was a challenge. She had tubes, drips, central lines coming out of her little body everywhere but one amazing specialist has always stuck in my mind. With the words he gave me, he empowered me as a mother.

He had just got back from taking my 10 day old baby to theatre for what turned out to be the first of many surgeries and procedures.

We were sat in a parent room, just me & him. He described in that sometimes too direct manner doctors have, what they’d had to do in order to save my baby’s life now and for the foreseeable future until they could stabilise her and see where her combination of conditions took her.

I soaked up every bit of information I could get, in hindsight if he had given me this information in anything other than clinical facts at that point I would have crumbled I think. I couldn’t cope with kindness or compassion at that point I needed to stay in control to keep it together for my baby that was busy being as strong as she could be.

He matter of fact turned to me as he finished the medical side of things and said “we already know she’s a fighter, several of the conditions she had could have easily been fatal prior to birth. We know this. Yet here she is. Several of her conditions are serious enough she’s here in ITU. We know this. Yet here she is. Yes those conditions are serious, yes they are rare on their own, yes even rarer combined and no we can’t give an accurate prognosis. Yet here she is.” I can’t describe the hope that gave me, nor the absolute belief in my baby. She was a fighter, in that respect she was strong.

This doctor, possibly seeing his words had landed where he needed them then turned to me as he prepared to leave and I’ve never, ever forgotten the moment. He said “I need you to always remember just one thing, she is always likely to need to fight in life, to be strong at times – be it for her health or otherwise, I need you to do the same. You’ll come across specialists that will not see your child, they’ll see her condition, they will see rarity, a chance to write papers, they’ll see opportunities to learn. I need you to be clear that yes they are medically qualified in their chosen field and you respect that. But YOU are her mother,the only expert in your child and they must respect that.

This man, this stranger to me before that day, quite simply turned my life around. He empowered me in a way I hadn’t known possible. My daughter empowered me by her very existence but this doctor, with his words and his manner gave me the courage to challenge, the strength to demand answers, the ability to question judgements, the power of being in control of what was best for my own child.

It’s never left me for a second.

I write this now because if it helps one parent feel more empowered then that’s good enough.

I write this now because if it helps one professional to see things a little bit more from the families perspective, then that’s enough.

I write this now for every educator, past, present and future, that has labelled me “A Difficult Parent”. This here, this is why. I hope you read this and understand.

I will always be my children’s voice, for you see, put simply, they are my heart. ❤️

❤️ Beth_Tastic ~ Warrior Mumma ❤️