amber rahim

Chronic illness: the parts we don't talk about

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Where’s the line?

This blog is supposed to be my story: what it’s really like, living with chronic illness.
It’s my view as a “patient” myself and my view as a parent to a chronically ill child.
When I write as a parent, where is the line between my story and Fs story?
When things happen to her, they affect the whole family, they happen to us too.

Yet, they happen to her first.
So am I telling her story or mine?

That’s the question on my mind lately. It’s also why I’ve not been blogging so much lately.
Did I drift away from my story to hers? Admittedly, it is so much easier to talk about her pain than my own. That may sound strange; a mother normally feels the pain of her children keenly. And that’s true: when she hurts, I hurt. But there is nothing more sharp than our own pain.
For while we feel bad when they fall and scape their knees, it is only when we fall and scrape our knees that we realise that it burns like a b*tch.

So where’s the line? Oh yeah, back there. Got it.

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Yay for carrots!

I’m disproportionately excited about carrots.
Why? Because this is the 3rd vegetable that F will eat. It’s taken us 7 & a half years to get here but Yay! (As I write this I had a flash back to 6 years ago and a dietician suggesting I try carrots for F as part of the “she won’t eat anything what should we do” plan.
Well, salt fiend that she is, finally she likes that they are sweet.

So what veggies have we got in the bag?
Green beans
well, mostly the beans inside the pod (she picks them out herself)


ah, corn on the cob with lots of salt and butter


roasted, of course. The best way to cook carrots.

Coming up next! Butternut Squash

actually she likes this already. She thought the roasted orange delights she liked were carrots. And like the fiend I am, I went along with it. Then one day she caught me out and I thought “oh pants”.

She suprised me. She wanted carrots  so I roasted some. She ate them.

so now no matter what I’m cooking for dinner, if she wants carrots, I put on the oven and roast carrots.

whatever it takes. I want her to eat so badly, I’ll do anything.

well, except when she asks me at 7pm. Then I make her wait until the next day. By the time they would be ready it would be bed time.

Oh, and if we don’t have any carrots in the house, then she’ll have to wait until the next shopping day.

Ok, I won’t do anything so that she will eat. But I do try very hard to have the things she likes to eat in the house. But if we are out, we’re out. Maybe she will try something else.


Note: I hate wasting anything so I just have to say: I use the small oven. I wouldn’t turn on the big oven just because she wanted carrots. 

Oh and she eats tomato soup and ketchup (Heinz I love you). But not together, eww.





Tough love

for those who know me on FB you know that Fs Mickey button exploded. Again.

She’s still traumatized from the first time that happened. And from the last time the nurse changed (when the nurse had to push it through her abs of steel).

So my dear daughter, when I heard what happened at school on Monday I knew that it was going to be another really hard day for you.

You walked in knowing what was going to happen (it’s at these times that I wish you weren’t so smart).

I held you as you cried your heart out. Told you it was going to be ok, both of us knowing that there was a bump in the road to “ok” that you needed to face first.

I wish I could have held you until your fears disappeared. But we had 30 mins to get to the hospital and get a new mickey in place before the nurse left for the day.

So I put on my firm, tough mama voice and made you come with me. You were literally sick with anxiety. I wiped your mouth and then we had to keep moving.

We needed your cooperation: when you tense, your abs create a solid wall where it’s almost impossible to insert a new mickey into that hole in your stomach.

So we practiced at home, in the car, on the hospital table. And somehow you managed to scream and relax your abs at the same time (holey moley batman, how did you do that?)

I’m sorry I had to make you choose. Choose between admission to hospital and a potassium IV (that burns people, it burns your veins) or let us change the Mickey.

Im sorry. I hope you believed when I said I wished it could be different.

I wish that your smile on receiving the cuddly monkey toy from the nurse went all the way in, to your soul. I wish that it could heal the scar on the inside as quickly as it changed your expression.

I wish I could have held you until your fears were gone.

And I hope that one day you will understand that I was doing my best for you: making the tough decisions.

Tough love. Sometimes it sucks to be a mum.