Building Community as a Carer – Why do my friends call this life The Hunger Games?

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I received one of these pins from a friend. A friend who is a dear part of my community.


One of my friends pictured below:

A symbol of a horrific journey that brought us together

In our group, unfortunately – 4 mothers and our sons- our children all were diagnosed with life limiting illness.

We need the odds to be in our favour

2 of our beautiful boys are gone but we are steadfastly supportive of each other.

Do you remember those moments when Katniss holds her hand up for audience to see? Solidarity. We’ve got your back and we’re not giving up.

Our boys pain, our own pain, their ‘unlucky’ genetic draw card, it has brought us together in a journey. Yes, we didn’t choose this journey, but we are fighting this battle with everything that we have.

The pin, that gift for the other mum and myself, is so beautiful, it brings me to tears.

Then, just before Christmas, this gift was supplemented beautifully with a gold bangle inscribed with the words:

MAY THE ODDS BE IN YOUR FAVOUR

A reminder for each of us that we are never really alone.

No matter how awful footsteps of this journey become, there is another family, another child, another mum who has walked this path.

Whether ahead of us, with us, or behind us.

This breaking of isolation, this sense of community – I believe – is key to the mental health and stability of many of us.

Community is key to our stability as Mum’s of children with disability

I am sure out in the community there are other mum’s who have created similar bonds forged with the fire of adversity.

Adversity that most would prefer never to even think about much less imagine that they or their child might endure every day of their natural lives.

Using this unique story to seek out others in your journey who have similar stories is a very rewarding thing to do.

Some use their story as a reason to avoid community

Many use the uniqueness of their journey to withdraw and tell themselves that no else could possibly understand.

I have watched some women I know put those messages out into the world. Many of those women struggle with symptoms of anxiety and depression.

But what they may not realise is, many of us struggle with the same symptoms. Those of us who consciously decide to build a community, we do it anyway.

We make a different choice.

To create our own company of ‘Hunger Games Gals’.

I know from my typical mothers group days people really worry about being in a group of women where comparison is constantly being made.

I get it, and it might take a few tries to seek out your people. Make up your mind to enjoy the process, reminding yourself that what you look for, you will find.

Besides exhausted special needs mum’s are normally so aware of their own short comings that they haven’t got capacity to notice others people’s.

There is nothing more incredible than a group of women who know what you’re experiencing, cheer you on.

They know when they inquire how a procedure went or how you are, the weight of what they are asking. They can handle whatever you details you choose to share.

Many-a-day the conversations our group of ‘hunger games gals’ involves graphic pictures of poop, blood, stomach contents, and medical devices.

Many understand the relief behind a terrible prognosis. Simply because having no idea what was happening is worse.

Not knowing if something else could be done. Knowing that sometimes having an answer is the best thing you could hope for.

Those things that make you feel like it is impossible for anyone else to understand?

There is another mum out there thinking just the same thing.

Is it luck if you make a different choice?

For those who would say ‘you’re so lucky’, I would question;

Is it really luck, if you make the choice to get to know those around you?

If you’re on a hospital ward, try talking to the mum in the kitchen making breakfast.

– I would start with one I knew I had seen before, or I knew had been there more than a couple of days. (It was unlikely to be a broken arm from the monkey bars – I’ve done that too.)

Or in specialist clinic and someone else’s child has a similar piece of equipment to yours. Or an orthotic of some kind. Or even something you’re contemplating needing in the future.

Step out of your zone for a moment

Ask them about it.

Share a little of your story and listen to theirs. You will learn all kinds of new things – some that you didn’t even know you needed to know.

Somewhere along the way you’ll collect beautiful people you can call your friends.

Then no matter the time of night or day (if you’re up they probably are too) send them a quick message. Ask them how they are doing or just open with the issue that is making your mind go in circle..

There is nothing like it. I am totally grateful for the Hunger Games Gals.

But I know it took more than luck to find them.

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