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How to Support Parents of Children With Medical Needs

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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!

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.

A version of this story originally appeared on Despite This.

Getty image by SusanMcAnnally

Originally published: May 4, 2019
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