amber rahim

Chronic illness: the parts we don't talk about


Who’s choosing anyway? Taking control of my life.

I actually wrote this last year but it feels relevant again. After this hectic last 6 months and completing my exam (for those who want to know, I passed!) I really feel like pootling for a bit.

%22You're on your own. And you know what

In the Netherlands there is a motorway that is 5 lanes wide, called the A2.    It was widened to release congestion and the speed is limited to max 100kph.

At non-peak travel times it is funny to see 3 lanes with traffic and hardly anyone is tempted to speed along in the 4th and 5th lanes.  I’m sure the traffic cameras and the speeding fines have something to do with it but I also think it is a part of human nature to follow rules and guidelines.

There is common sense in them.  Slowing down reduces congestion at hot spots.  It’s safer, you’ll get there around the same time anyway, etc.  I kept to the speed limit, I thought I was being a good citizen.

But actually, those aren’t the reasons I kept to the limit.  I kept to the limit because I liked it, it was comfortable and quite frankly, after the series of mega unfortunate incidents in my life in the last few years, I have a very great appreciation that it can happen to you.

I’ve seen death approaching and I don’t want to meet him again any time soon.

Hospitals aren’t much fun either and I have had plenty of opportunities to sample their delights on a regular basis so I don’t need a car accident to bring me there too.

So I mosey down the A2 highway and it feels good.  I’m glad they set that limit because actually I don’t want to go faster than that anyway and the government gave me permission to drive slowly.

On roads where the limit is 120kph I still only want to drive max 100 but somehow I feel pressure to go faster.

One day I was struck by how funny that is.  I am opinionated, decisive and really don’t like being told what to do.  Yet I feel like I should go faster than I want to, just because of a road sign.  That’s when I realised that the reason I like the A2 so much is that I am relying on someone else to give me permission to be how I want to be.  How ridiculous is that?

I could just give myself permission.  I do give myself permission.  Permission to cruise when I want to, to race when I want to, to stand still when I want to.

So the next time you see a slow poke cruising down the road, it might be me.  I’m not trying to get in your way or make you late.  I’m feeling good.

I’m choosing.


The downside of bringing up independent kids

I have written before about bringing up kids who are independent, make their own decisions, are self sufficient. It’s a good thing. Yet sometimes it’s not.

As other MoBs (mothers of bartterskids) know, we are also teaching our children how to manage their illness. This can involve life or death decisions.

We know that one day we need to let go and let them make their own choices. They need to strike out on their own, solve their own problems and not involve us in the process. We hope that when that time comes, we have done enough that they know how to make good choices for themselves.

Yet humans do not always make good choices. It is always at the back of my mind that one day F will stop taking her meds. This terrifies me and the for the sake of keeping her well, alive even, I could violate her right to choose and force it on her. But that only works short term and legal independence comes at the age of 18 and what do I do then? Or what happens when I am gone? I want her to look after herself so that means she has to do it. So I need to let her make her own decisions.

So what if she does something stupid and ends up in hospital? What if she hurts herself?

I do not know what I will do but it is inevitable that both my children will make choices I don’t agree with, do things that I think (and know) will hurt them.

This dilemma that we face drives me nuts – we want them to be independent but we want them to do what we say!

What do we do?

Whether your child is ill and doesn’t take their medicine or is in trouble and doesn’t accept the help that is offered; or you think their friends are bad for them or you just want their jeans to actually cover their butts (both girls and boys), this is what I have realised:

These lives are not ours. We are only guardians. Only they are the kings and queens of their lives. And a King or Queen is an absolute ruler.

So I hope that by preparing them for independence and, when they are almost ready, letting go, that they will rule their kingdom wisely. And if they don’t, give me the compassion to forgive myself for letting them choose.

My second hope is this: that when they have tried it on their own, made mistakes, given us grey hair (ok, in my case, more grey hair) let’s pray that it doesn’t take too long for them to realise that it’s ok to seek advice, that they don’t have to do it all alone. All rulers need an advisor. Let’s pray that our act of letting go makes it easy for them to turn to us when they need us.

So I’m going to keep doing those little things to prepare both my girls; get them to tidy up their own toys, let F administer her own meds, let S brush her own teeth. Then as they get bigger, let them do bigger things.

I hope that when the time comes, I can let them go (without giving them a long list of instructions of what not to do).

Dedicated to my parents who brought me up to be smart and gave me the freedom to make my own choices. Some have been brilliant and some have been spectacularly stupid.  Thanks for praising the good and being there during the bad.


My own Oscars thank you speech

I would like to thank

In Oct 2012 I started my journey of changing my life so that I could do the work I want: supporting others to discover and develop their intrinsic strengths and to live a lighter life, unburdened. A major milestone in this journey has just been reached with my submission yesterday of my written exam for my certification as a Professional Co-Active Coach. I would like to take a moment to thank the people who made it possible.

To F.

From before you were born and they unceremoniously pushed your feet back in and told you “you’re not coming out that way” (ok, maybe that was only unpleasant for me), with your cesarean birth 10 weeks early you have learned that new experiences are painful. You almost dehydrated to death and they spent the first 24 hours poking you with needles, trying to get IVs into your teeny tiny veins and pumping 3 times your body weight in fluids into you to keep you alive.

Even every gentle touch on your preemie skin was unbearable because it wasn’t ready for touch yet (so they asked me not to stroke your cheek). Every day brought more needles, more medical procedures.

Cuddly toys were intriguing but you were punished for your curiosity because touching them would make you shudder, sometimes even vomit.

So many experiences were unpleasant or painful. Yet you still try. You are cautious yet you amaze me with your ability to actually try new things and you blow me away when you jump in with enthusiasm and belief that this new thing could be good.

To S.

No matter how many times you fall you get back up and go again, smiling, full of energy and determination.  Everyone around you can already do these things but that does not dishearten you, that they are better than you. You want to be good too so you keep practising until you get it right, growing each day in your ability to adapt your plans when they don’t work and try a new way to reach your goal. Such determination.

I thank you both for showing me the way:

Dare to try something new, even if experience has taught you that new things aren’t always good.

Keep trying until you succeed.

Above all, do it with grace and laughter. Enjoy it.

To J.

You always believed in me and never faltered in your faith that I could do this. You took up some of my burdens, without me even asking, without fuss, so that I could focus. You listened to my frequent self doubts without rolling your eyes in frustration or disdain (ok, sometimes you did that but only after I had tested your patience to the max).

You put aside your own goals to support mine, yet still managed to find time to actually pursue your goals.  How you managed to do all that I will never know but I thank you for it.

To my clients and fellow certification colleagues

You gave me your trust and let me practice and hone my craft on you. You showed me what is possible when you step into your life with fierce courage.

You have all shown me what happens when you give yourself permission to be yourself, to pursue what you really want and when you realize the strengths that you already have:


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Rare Disease Awareness Day 2014


28th Feb 2014 was the 7th Rare Disease Day.  I only found out about it this year so although a lot of work has been done (over 1000 events in 70 countries have been held) there is still work to be done.  So this is my first contribution.  Go and have a look at what they have to say (but first finish reading my post ;0).

What is a rare disease?  I wrote about my definition in a previous post and the people at Rare Disease Day have a more scientific definition but when you get to their common problems bit you’ll see the similarities.  Nobody knows much about them.

In addition to the obvious impact of this lack of knowledge there is an underlying problem that we don’t really look at: empathy or rather, the lack of.

Let’s start with my lack of empathy. A few years ago whenever I heard someone talk about their child having a cold or being sick there was a part of me that muttered “oh puh-lease!  That’s nothing.  You have no idea how lucky you are”.

I couldn’t listen to their stories, I didn’t understand what that was like: to see your child healthy one moment and then suddenly change and become sick.  My baby was sick all the time.  I couldn’t relate. I had no empathy for them.

It took a little patience on my part (and isolating myself from other people and feeling pretty alone, to be honest) for me to realise that we do have something in common: being a parent of a child who is sick.

Every parent worries. It’s never nice when your kids are sick.  I don’t mean just the cleaning up the puke and poop. Seeing your child in pain, with a fever, knowing that you have done all you can and you still can’t take away their pain. These are the really crappy moments.

So, although I don’t know what your life is like when your child is healthy and ok most of the time, I do know what it is like to see my child suffer so I offer you my empathy, parent to parent.

In honour of Rare Disease Day I ask you to offer your empathy to all those people who have a rare disease.  You may not know what their disease is or what impact it has on their lives or even how much harder life is for them. But you do know what it is like to get sick or look after a sick child. You can relate, you can empathise.

Let them know that.

p.s. it’s not sympathy we are looking for, just some understanding.