amber rahim

Chronic illness: the parts we don't talk about

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Oh Mic-Key you’re so fine

you’re so fine, you blow my mind, hey Mickey!

If you are old like me, you remember that song (just click on the link above if you want a trip down memory lane).

Today I wished that the healthy one, S, had a Mic-Key button. This is an enteral feeding c3729405c2e58cb4a2af914378c94e0ddevice that is basically a piece of tubing that you put into the stomach so that you can put food/medicine directly into the stomach.

F gets all her medicine through hers.

Yesterday S had minor surgery to repair her thumb – the top came off, nail and all, in an accident at school. She has lost the nail and hopefully it will grow back. In about 6 months. I wrote about it here

Her bravery carried her through the poking and prodding of the doctors, the gas to sedate, the local anaesthetic. It lasted until she came home and we tried to take her coat off.

All the fear, terror, and pain came together to overwhelm her.

THEN we tried to give her antibiotics. She is in very deal danger of developing an infection in the blood but of course she doesn’t understand that. She’s little.

And it tastes yucky. She’s scared of it. Transference perhaps? But actually who cares. I need to get the medicine in her.

And in her own words:

Can I have a Mickey like F has?

That would make both of our lives so much easier right now. How do you guys get your kids to take their medicine?

You’d think we’d be masters at this: we do give F medicine every hour that she is a awake (and through the night too). But we have never had to make her drink it. She has a Mickey button so we always use that.

Now the healthy one needs to have medicine and she’s fighting. And it’s tough.

So today I wished she had a Mickey too.


p.s. chocolate is not a great motivator for this little sugar addict – I mean seriously chocolate, how could you let me down like this? Lollipop, you’re up next.


When the healthy kid is in hospital

Parents of a child with a chronic illness go through a really fast track of learning to cope with medical emergencies.

They know the drill: we have done this so often, and honestly, we expect it. We know what the likely outcome will be, and are generally badasses at coping with the stress.

Until the “healthy” kid gets sick.

So today, I’m in a bit of a state. My stomach is in knots and I really don’t know what to do with myself.

S, the one without Bartters syndrome, had an accident today at school and needs surgery on her thumb. It’s serious. And I don’t know how to cope.

And those chocolate cookies have done nothing to help.

I want to be at the hospital. This may seem normal to you, but with F, I’m ok with just J, her dad, being there. Because we have always taken turns, tag teaming hospital duty like olympic athletes.

But with little S, I want to be there. But I can’t. F has spent so much time in hospital and treatment that she actually has PTSD from it and a Phobia of medical treatment. So she is too scared to go.

So I am at home. Letting out my trembles and fears in this post. Cooking a dinner that will most likely churn in my stomach for hours.