amber rahim

Chronic illness: the parts we don't talk about

Control the fun


The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.

What can I say? Who know what goes on inside her head.

This is a story about this special, quirky girl.

Control the Fun

It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.

Let me explain.

Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.

Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.

He doesn’t.

Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.

So as you watch, what do you do?

Do you stop her, calm her down? Or do you let her enjoy the moment?

Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?

Or do you keep her safe in a life without the heights of joy?

People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.

It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.

A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.

If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.

But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.

The price that she has to pay is just far greater than we have ever had to pay.

So back to the little 3 year old girl. What did you decide?

Did you keep her safe and out of hospital? Or did you let her live a little?

We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.

We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.

She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.

She is amazing.


3 thoughts on “Control the fun

  1. I love this because it describes the decisions we make every day with our BS kiddo. He loves to run. When he was born we were told he might never walk (ridiculously early birth) and it took hours of PT to teach him how to be mobile, so it is hard to tell him not to run. But then we remember the hospitalizations from bs this summer and it is hard not to worry. Thanks for making it seem normal to have to walk this rocky road.

    • Hi Laura, I really love it when I meet someone who gets this life. I saw a post on fb from a mother describing a tough day with her kids – them jumping in mud on the way to the dentist. And I know that motherhood is hard and all children can really challenge us. But it hit me, that she probably has no idea what we go through. Well, I had just come back from a hospital appointment and my daughter said “I wish I was someone else”. and she has such a high level of anxiety because of her illness.
      Then I saw that post on FB and it made me feel alone.
      I hate that you are dealing with BS and that your son has it. But I’m glad you left a comment today. It makes me feel understood. that I’m not the only one dealing with this stuff.
      so thank you for leaving a comment.

      • Tonight he ran himself silly and then starts to have THAT cough – the cough that means he’s over done it – and I realized that all I could see was a sea of clean carpet and parents (we were at parent teacher conferences) and NO trash cans or lenolium or quick exits. And no back up bucket. That was tonight.

        Not the worst aspect of the disorder, but sort of our version of “then the kids jumped in mud.”

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