Jessie is a startup consultant and writer from Victoria, Australia. She loves turning ideas into realities.
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Despite This

A personal blog about family, faith, the struggles of navigating the healthcare system, Congenital Heart Disease and living full despite health adversity.

 
Published on The Mighty

Published on The Mighty


Re-published by The Mighty May 2019
Published on
Despite This September 2018

What to say, what not to say

I read about the Ring Theory a few years ago and it’s stuck with me ever since. It’s so helpful in answering the common questions that so many people ask in a crisis situation:

  • What do I say?

  • What don’t I say?

You would be amazed at what some people have said to us over the years about our HeartKid and the whole ongoing medical situation. Some have literally left me lost for words. And I know we’re not alone. So many people have shared stories with me of (hopefully unintentionally) hurtful things their friends or family have said to them during a crisis. Let me give you a hint, the following statements are not helpful in any way to someone in crisis:

  • "Special kids are given to special people.” Do not say this to people. Ever. No ifs, buts or maybes. Just delete it from your mind. It’s not true, and as a good friend once said to me, ‘When people say that we are given special kids because we can handle it, yep I totally call BS. I am not equipped for this or do I even want to do it.’

  • “They’re doing so much with medical research. I know they will come up with something amazing.” Subconsciously, I think people say this to try and be helpful and cast hope. They’re possibly also in denial themselves about the somewhat helpless situation. But it doesn’t actually help, as medical advancements are not going to beat our son’s need for a new heart valve. Unless you’re a paediatric cardiologist who knows my son’s situation, or a heart valve scientific researcher, then please don’t say it. It might make you feel better, but it doesn’t help our reality.

  • “You need to pray and then trust that God will heal him. Have faith.” We do pray, but that doesn’t actually mean God will heal our son. He doesn’t promise that He’s going to heal everyone. And I’m OK with that.

  • “There’s a lesson in this for you.” No words.

  • “God’s got a bigger plan that you don’t know yet.” Probably, but that’s not a helpful thing to say in the middle of a storm.

  • “This has been so hard for me.” My all-time favourite.

So is the answer to run away and not say anything to someone in crisis? Avoid them at all costs? Never talk about their illness, sick child or family member? NO! People in crisis NEED YOU!

 
 
Ring theory.jpg

This is where the Ring Theory is such a valuable concept to cement into your mind. Basically, the person going through the crisis is at the centre of the ring. When our son was a baby, I would say it was my husband and I at the centre. As he gets older and is more aware of what’s going on, I feel like it will be him at the centre. The next ring is for people closest to the crisis. For us, that will be my husband and I when our son has his next open heart surgery. When he’s older still, this ring will change to his wife (if he has one). People immediately affected go next. These are the people that are affected physically and emotionally by the crisis - they live with it every day, they see the medications, they usually would live in the same house as the person at the centre. This would typically be immediate family, such as siblings or the person’s own children. Depending on your situation, the next ring is for close extended family or very close friends - it could be grandparents, best friends, god parents etc. And you keep adding rings for all your layers of relationships. These rings change and evolve over time.

Ultimately, the aim is to comfort in, dump out. If you’re not at the centre of the ring, your job is to care for anyone who is closer to the centre than you. Listen, do things to help, and only say things that are going to bring comfort or help. Match the person with where they’re at. If they’re bagging out the healthcare system, go with it. If they’re laughing, laugh along with them. If they’re talking about Masterchef or the latest royal wedding, join in on the conversation. Do not cast judgement, don’t tell people how they should be acting, don’t tell them ‘everything will be fine’ and don’t tell them they need to communicate more. Your aim is to comfort.

I think it depends a lot on the personality of the person at the centre of the crisis, but some helpful things people have said to me are:

“I can’t imagine how hard this must be.”

“We’re here for you in the long run, no matter how long that is.'“

“We’re praying for you.”

“Single or double shot?” I’m talking about coffee here - don’t ask IF they want a coffee, just ask how many shots they want. Better still, just arrive with one in hand. It doesn’t even matter if they don’t drink it.

“Where’s your lawn mower?”

“We’ve put $50 into your account. Use it to make life easier.”

“It won’t feel like this forever.”

If you need ideas of what to do, here are some of the amazing ways people have helped us.

If you need to talk to someone about how hard the crisis is for you, how it’s really affecting you, how it’s making you worry and get anxious, then by all means do that. It’s important as the impact of a crisis does stretch wider than those immediately at the centre. But tell someone in a bigger ring to you, not a smaller ring.

When you think about it, it’s quite a simple concept. But it’s one which has stuck in my mind and has been so helpful when crises have come up for other people we’re connected to over the past few years.

Remember, comfort in, dump out

 

 

Re-published by The Mighty May 2019
Published on
Despite This November 2018

Having fun

I don’t know if it’s just me or not, but quite often in life I forget to have fun. The kind of fun that makes me feel young. That makes me laugh so hard my belly aches. The kind of fun that takes my kids and husband by surprise.

I get so caught up in the day-to-day monotony of life, that I forget about fun. With a family of five, there are lunches to make, benches to wipe, floors to clean, dinner to cook, shopping to be done, washing to fold, bathrooms to clean, kids to drop off, readers to get through, diaries to sign, weeds to be pulled, lawns to be mown, windows to clean, nappies to change, cupboards to sort, dusting to be done (who am I kidding, dusting never even makes it onto my list, let alone actually get done). The list is endless.

And as a mum of a son with extra health needs, there are appointments to attend, letters to chase, forms to fill in, medication to give, a hospital to contact and therapy to be done.

And this all happens around my work. It can be quite overwhelming.

As a task oriented person, I find it so hard to put my never ending, continually growing to-do list aside. Interestingly, my husband noticed recently that when I get busy or stressed, I tend to focus on everything I’m not doing, so I find it even harder to stop ploughing through my list because I focus on everything I haven’t done. These are the weeks I should probably be doing the opposite and going easier on myself, but for some reason my brain manages to make me even more stressed…so helpful! I’m sure a psychologist could give me a great reason of why I do that.

But, every now and then I decide it’s time to just have some fun and surprise my family. To hopefully give them memories that make them smile while they’re falling asleep. To make myself chill out a bit and not take life so seriously. To feel like I’m a cooler mum than I probably am. To embrace one of the great things our son’s heart condition has taught us: you never know what the future holds, so make the most of your life while you’ve got it.

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Like the time I initiated a shaving cream fight in the middle of our dining room! Our daughter had planned a shaving cream fight outside for Family Night, but the weather ended up being terrible. She was so disappointed. So I thought what the heck, let’s just do it inside. Shaving cream is such an easy thing to clean up, and we had an absolute blast. (Well, not our sensitive, somewhat OCD son who couldn’t handle the mess and chaos, but the rest of us loved it.)

Or the time I threw my bathers on and joined our three kids playing in the sprinkler outside. You know what happened? It motivated my husband to get into his bathers too and we had such a fun time playing some made-up shark game in the water.

Or the day I bought a scooter to join in with all the fun our kids were having on theirs.

Or when I snuck down the street one Saturday morning and brought McDonalds breakfast home for everyone. Am I an advocate of Maccas? Definitely, it’s a life saver for parents and an excellent coping strategy…don’t let anyone tell you otherwise 😉

At the end of the day, I think we all know that having fun as a family is a better investment than cleaning the house. I just need to remember it a lot more often instead of working through a to-do list which, let’s face it, is never going to be finished.

 

 

Published on Despite This August 2018

The moment

My world was changing before my very eyes and I didn’t even know it.

I did but I didn’t.

Not to the point that it has.

Not to the point where it impacts me day in, day out.

Not to the point where every moment is lived with a knot in my stomach, with a thin layer on top covering a depth of emotion that I didn’t even know existed.

It was the moment that changed so many things.

It feels like the moment that divided my life in two: life before the diagnosis and life after.

It was the moment that divided my son’s life in two: his first 19 days, and now his five years since.

It was the moment that threw our family into world of chronic critical illness that we knew nothing about.

It was the moment when I started living life with a lump in my throat.

How one moment can change so many things.

—————————————————————————

The room was spinning.

It feels like a total blur, but also so clear.

I can remember so much but so little.

A cup of ice in a polystyrene cup. Anything to hold, suck or drink to distract me from this nightmare rolling out before my very eyes.

A 4 bed room with patients, other parents, nursing staff, hospital visitors and doctors walking past and watching on while the cardiologist and the technician worked out what was going on.

Tears rolling down my face while I look at my baby, in total shock with what was going on.

My hands were shaking and everything felt slow, yet fast.

I could hear everything, but none of it made sense. It was just a mirage of words that I didn’t even know existed.

It was just after 5pm on Tuesday 23 July 2013.

Half an hour before, my husband and I were having coffee in the hospital cafeteria with my brother. And now here we were being told ‘your next 5 years are going to be shit’.