Three noticeable things changed after I received my daughter’s diagnosis:

1. I spent a lot of time planning and researching, to learn ways to help her survive and thrive against her life-threatening condition(s).
2. I took her to lots of different therapies to help her reach her full potential.
3. I began to advocate (fight) for her needs.

The aforementioned points took up pretty much all of my waking hours. My sleeping hours, well… they were now overtaken by my child’s additional needs – which seemed just has intense through the night, as they were in daylight.

On my quest for information I came across a scientific study by researchers at the University of Wisconsin-Madison, that special needs parents over produce the hormone cortisol that allows them to endure stress just like a combat soldier.

In fight or flight mode, special needs parents are in an ongoing fight for their child’s lives.

The US National Library of Medicine conducted an independent research and found that just as a soldier is on high alert to enter into battle at any moment, parents are constantly looking after their child or on active standby to jump back into the fray for emergencies at any hour of the day or night.

Can you imagine what is must feel like to go into battle when you’re completely exhausted? 

It’s tiring enough as a new mum of a healthy baby, but when older children are fully dependent on their parents for most of their basic human needs it amplifies the stress, tiredness and the amounts of cortisol that your body produces.

Just as a solider on the battle field can suddenly get attacked from all angles, so too a parent who is suddenly tossed into the insane labyrinth of the medical system, with very little support.

The huge difference is that soldiers choose their path and receive significant training.

Special needs parents don’t.

I recently watched a TEDx talk by Ed Stafford an ex-military about his expedition to walk the entire length of the Amazon River. It was interesting to listen to him speak about the biggest threat to his expedition, which you would think would be venomous snakes, or deadly spiders or even indigenous tribes.

Yet the most threatening of all, was the state of the mind.

He was told that it’s not going to be the physical part that is going to be the hardest, it was actually going to be the mental part, the top two inches!

The part that he had absolutely no training in.

Same goes for us special needs parents, we are thrown into a whole new world and way of living without any training other than on the job as we go.

Ed went on to share that during his amazon venture, he desperately needed to shift his mindset. He made a call on the satellite phone to a Neuro Linguistic Program (NLP) expert, to get advice on how to get out of the mental trap of negativity and overwhelm.

Through his call he was able to get some perspective and understanding. A reframe to what he has been experiencing. After all, he had just taken himself out of modern society to embark on this huge exploration. (Reminds me of the feeling we get as special needs parents, as soon as the diagnosis hits!)

A great tool that he learnt from the NLP expert was to envisage someone in his life who is really inspirational, and when his mind started to spin into the negativity – he would have to imagine this person next to him.

This simple yet effective mind tool, helped him successfully be the first person to walk the entire length of the Amazon River.

As I watched his TEDx talk I couldn’t help but think of all the parents who are raising children with additional needs. The endurance required through broken sleep, attending to life-threatening seizures, exhausting hospital stays, operations, missed milestones and the constant worry for their child’s health. All these things take up not only a lot of physical power, but more so, mind power.

It takes a lot of inner strength to show up on the battlefield, especially when we feel tired and overwhelmed. Yet we soon learn that is not only the child themselves who are the real warriors, but their parents and siblings too. Together this tribe of people keep showing up braver, stronger and more loving to their unique family journey – and that’s something that is definitely worth fighting for.