amber rahim

Chronic illness: the parts we don't talk about


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Sometimes we want to be afraid

Last sunday we went to a creativity workshop and open day with the girls and they loved the freedom to get really creative with their painting … and not have me worrying about getting paint on the floor. (Remember Monica in Friends? yeah, sometimes I’m like that “I want to control the fun”, keep it tidy. Shaking my head in shame).

On her way back from washing her hands F ran into a wall (in a straight, empty, corridor. I mean, how is that even possible?).

Turns out she thought she had reached the studio, turned left, her shoe flew off and she kicked the concrete wall. Hard. With her big toe. (is it wrong that I had a moment of relief at this point? the fact that she meant to turn means a lot to me)

It’s not broken. We got it checked out in the way that parents of chronically sick kids do: 4 days later. Don’t judge. The last thing we want is another trip to hospital. We do enough of that already. And it’s the last thing our kids want too. But that’s another story.

She rested up for the whole afternoon. Noone could touch it or sit on the same sofa as her, just in case they touched her (not just her toe, we couldn’t come within 1m of her).

Bedtime: the obstacle of skinny jeans

“I’ll help you with your jeans. We’ll be careful when we take them off” I said, thinking that this was a good thing. Oh, how can I still keep on forgetting who I’m talking to?

She processed this and realised straight away that this might hurt. She started crying. Really hard. This lead to one of the most beautiful moments I’ve had with her; the two of us sitting in the bathroom, she on the toilet, me on a stool.

“It’s time to take off your trousers. While you’re sitting, I’ll pull them off” I said.

“No!” she cried. And cried. “I’m scared!”

I tried to calm her down:

“I haven’t done anything yet. Please calm down. You can cry if it hurts but please don’t cry because you think it’s going to hurt.

You don’t have to be afraid. Do you know that you can choose to be afraid or not?”

She said “Yes”. (So she does listen to what I say to her).

“Do you want to be afraid?” I asked. And this is when I saw her at her most beautiful: honest, open and accepting of herself

“Yes, I want to be afraid” she replied.

So I let her. I put my arms around her and let her be afraid.

She cried some more. Then she started talking, laughing.

She let me take the jeans off her uninjured foot. Then she let me take them off her other foot. There was a lot of pausing and checking in. She was still scared, but much less so.

It hurt a little.

I carried her to bed. She slept on her back the whole night, not turning like she normally does. She told me how she was able to do it: “I kept telling myself, don’t turn, don’t turn. And I didn’t”.

This experience taught me a couple of things:

  1. Just how amazing she is. I know it, but now I see her even more deeply.
  2. We don’t need to make our children happy all the time.

Sometimes we get so caught up in trying to make our kids happy that we forget that they want to feel other emotions too. She wanted to feel scared. When we honour their feelings and their choices, we honour them. We tell them that they matter.

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Why I hate Frozen

If you are a mum like me, you do this:

run and hide in the bathroom when the kids are driving you nuts.

Well, my sweet, smart and cheeky S just destroyed for me.

Today, while I was trying to find my sanity she came up to the bathroom door and sang “do you want to build a snowman?”

then she sang through the lock and then under the door.

how could I not open the door?

so thanks Frozen. I have lost my refuge.

It was incredibly cute though. I’m still smiling.


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3 important lessons for happiness in 2014

Happy New Year everyone!  A sincere and heartfelt wish for good health to you all.

I did not expect to write a “new years” themed post but life is full of surprises.

It wasn’t a good start to the year.  By last Thursday (only the 2nd day of the year) it had already become too much for me.

Normally I don’t like to stay up until midnight on New Year’s Eve.  I’m tired most of the time anyway and it just takes me too long to recover these days.  Plus, there’s something about having to stay up that I rebel against.

I stayed up this year as we were with family (it was a lovely evening) but by Thursday morning I was still recovering.  My daughter woke up around 9am feeling ill.  With terrible stomach pains, she was crying and throwing up.  As I tried to comfort her my mind ran through all the things it could be:

  • Stomach bug
  • Bleeding ulcers
  • All that Piri Piri sauce she ate yesterday
  • Bleeding ulcers!
  • Gastritis …. and bleeding ulcers!!!

I have a bit of a paranoia about bleeding ulcers.  You see, she is on a combination of meds that can cause ulcers.  She has already had severe gastritis because of her meds (age 6 months) and she is on an NSAID that is only for short term use (read weeks) because it causes ulcers and she has been on it for 6 years.  Yikes!

It’s a calculated and managed risk.  It saved her life in the early months, kept her out of hospital in the first couple of years and allows her to have a good quality of life now.

However, it is a ticking bomb that may or may not go off.  If she gets an ulcer she won’t be able to take this or any other NSAID for the rest of her life.  Muscle pain and need Ibuprofen?  No can do.  Quality of life?  Seriously affected.

So while all this is going on in my crazy, tired head, and I am trying to comfort her, my poor little girl is crying and asking for Dad (who was temporarily unavailable).

Brimming with frustration and impatience I just wanted to tell her to “stop it, just be quiet”.  (Well, I wanted to shout it actually and there were quite a few exclamations marks in my head too).

I took a breath, explained that her dad would be back in 2 minutes and that I needed to go to the toilet.  Then I left the room.

I stayed in the bathroom for a long time, much longer than necessary.  I put myself in timeout.  Her dad was brilliant with her; kind, patient, loving.  Just what she needed. I am so grateful to him because last Thursday I just couldn’t do it.

So these are my 3 important lessons for happiness in 2014

  1. It’s good to share the load.
  2. It’s better to walk away than say something you would regret
  3. Accept that Mummy time is never at a civilised time of the day (like 9am on a Thursday).  Kids want their mums at stupid o’clock times like 4am on Friday morning.  That’s when they want you to sit with them and hold their hand.  So I did.