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Chronic illness: the parts we don't talk about


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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.


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I love you, but I don’t always like you

Youshare-Award-FNL-v1-200x2001

Parenting is supposed to provide unconditional love: you for your children and from your children to you. And it does.

That’s a parenting truth.

Here’s another parenting truth: your kids won’t like you all the time.

They go through stages where they prefer daddy over mummy, and sometimes, mummy over daddy.

Then they hit puberty and don’t like either of you.

I can see you nodding, Can I get an Amen?

What people don’t talk about is how sometimes you, wonderful parent that you are, don’t like your kids.

So I’ll fess up here and tell you my truth:

Sometimes I don’t like my kids

In fact this last week I have seriously disliked my kids.

  1. Is it because they don’t listen at bedtime and are messing about the whole time?
  2. Is it because they are testing the limits on food requests? Taking advantage of their eating issues to just pick their favourite food?
  3. Is it because I haven’t had enough me time to recharge my batteries?

Yes. Yes to all of them. But mostly it’s No.2

F does have quite major issues with food and it’s still really hard to have food available for her that she will actually eat. I’ve written about it many times and our patience and encouragement is working and she is eating more and more. Did I mention that she ate roasted butternut squash? Voluntarily. And she keeps asking for it. Isn’t that fantastic?

Yes!

Except for when it isn’t. Except for when she can’t face it anymore.

You see, with her condition, her electrolytes can go all over the place, she ends up feeling nauseous and then it becomes hard for her to eat. Her appetite disappears. Food smells and tastes funny to her.

So you never know when she is going to stop eating. Because of her condition.

And then she’s a kid. All kids do their utmost to create the most perfect life for themselves (go kids!).

  • They want to wear their favourite clothes all the time.
  • They only want to eat their favourite food.
  • They want to watch their favourite tv programs.

So, is the sudden difficulty with eating a result of her condition or has she decided she doesn’t fancy it anymore?

Well, I don’t know either. But my gut tells me that she has been playing me lately. Playing me. And I don’t like it.

I got frustrated. It showed. So I told her my suspicion. I asked her outright:

Are you only eating things that you absolutely love and fancy eating?

Yes, she replied.

Mo’fo’!

I’m going nuts trying to feed her. And S? She doesn’t have these issues but she’s a smart girl. She sees the pattern and copies it, uses it to her advantage.

So we had a talk about it. We have called a truce.

But here’s another truth:

The dislike is temporary. The love is permanent.

p.s. her growth has stagnated and her neph says she needs to gain weight. Hmm, I wonder how much this has got to do with my tension? Probably more than it should.

 

This story was also published on Youshare so follow the link and like it there please.


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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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I don’t know what this means, but I bet you’ve thought it too

On monday night we were all sitting together at the dinner table chatting.

The girls are fascinated by age and love to play this game “when I’m x, how old will you be?”

J went big on this. “When A is 80, F, you will be 74 and S will be 70”. The kids loved it!

I watched their happy faces and tried to imagine them sitting together having fun, at those ripe old ages.

And I could. Except for F. This little thought fluttered through my head so fast that it was almost imperceptible.

“Will F reach 74?”

I didn’t have this thought about the other two.

Now, you never know what the future will bring and I don’t know what it means, that I can picture S and A in their 70s and 80s but draw a blank when it comes to F.

I don’t even want to try and interpret it.

But I just bet that all of you out there, with kids with a chronic illness, will have that same fluttering thought if you play this game.

You might even have that thought about yourself.

Is life just so much closer to the edge when you are sick?


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What’s different about chronic illness No.5: always sicker

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

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p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 


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Come on in, my old friend Self Doubt. Come on in.

Inspired by a session with my coach on how we can shift out of (negative) emotional fields. We all have these thoughts of self doubt, that we are doing it wrong. But we don’t need to stay there. We can invite the feeling in, get to know it and then send it on its way.

Come on in, my old friend Self Doubt. Come on in.

You’ve been knocking on my door for so long. Whispering, and in turn shouting, through the letter box.

No matter how tightly I hold my hands against my ears or how loud I set the telly, I can still hear you.

So come on in. Have a seat. Get warm. Have some tea. Take two biscuits, not just one. Yes we are in the Netherlands but we are flouting the rules anyway by being together like this. Take the whole tin.

So what is that you want to tell me? What must I know?

Yes, I am a terrible mother.

Yes, I am emotionally scarring my children and they will never recover.

Yes, I am not doing all the things I set out to do.

Self Doubt, you keep telling me this as if I don’t know. What is your urgency? Are you trying to keep me away from joy? Are you trying to keep me small, afraid and guilt-ridden?

Well, it’s been working my friend.

But now that I have invited you in I can see you clearly.

You are small and frail. Brittle. Be careful with that tea, it may melt you, turn you into a puddle of ash.

Yes, now that I have invited you in I can see that you are small, not me. You are guilt-ridden, afraid, urgent. Not me.

You look tired. All this banging on doors and shouting through the letter box has tired you out. The anxiety is wasting you away. So let me send you to a wonderful place. A place in the sun, where you can relax. You do not need to speak for there is no one to hear you there.

Go. With my blessing and good wishes, go my old friend Self Doubt. It is time for us to part ways. We do not belong together.

I belong with Self Believe for I am interesting. I am quirky. I am dance.

I am a good mother.

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Dutched up: Rocking the clogs expat style

Earlier this year I started hanging out with other bloggers on Facebook. It was great to be among other writers, hear their stories and be on this writing journey with them.

Then one day Olga asked if anyone else wanted to contribute a story about living in The Netherlands to their anthology. Never thinking that my story would be accepted, let alone published, I said yes.

So, after a great amount of work by Lynn and Olga in collecting our stories and editing, our book is finished. 27 bloggers contributed and I am one of them. I am so proud of us all for saying yes and making this happen. Thank you NL women bloggers.

I write about chronic illness so my story is related to the Dutch healthcare system. We have stories covering all parts of life as a foreigner here in Dutchland. It’s funny, it’s sweet. It’s all so true. If you have every lived here, know Dutch people or visited, there is something here for you. Please check it out.

Check it out on amazon.com here

for amazon.co.uk use this link

for itunes click here

book cover