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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Dear children, your happiness is not my goal

I sometimes struggle with being a parent, it seems so hard and kids just seem so determined to do their own thing. I sometimes wonder “what is it that I am supposed to be doing here? How can I know if what I am doing is right?”

So I did what I often do when faced with life’s big questions, I perused Facebook. Specifically, my saved items in FB that I have saved because they look really interesting and worth my time (but will actually take some time to look at so I  decide to do it later and continue with the chitchat instead).

I watched this Ted talk by Jennifer Senior on happiness for children. It’s 18 mins long and if you cherish your sanity as a parent, I highly recommend that you watch it. It is the inspiration for my post today for 2 reasons

  1. she has put into words thoughts that I have been struggling to define (and has research to back it up)
  2. I want the best for my children

So here is my attempt to explain why my isn’t my goal to make my children happy.

It helps my sanity, and certainly my anxiety, that I am naturally quite lazy. Hmm, hang on, thats not quite right; I work very hard when I believe in something. But when faced with something I don’t believe in, my response is “what’s the point?”

When it comes to parenting, these are some things I don’t believe in:

  • I don’t believe in parenting as a verb

Until the 1970’s, parent was only a noun (thanks for the info Jennifer): something we could be, not what we could do. This small grammatical change seems to coincide with an increase in the amount of work we apparently need to do as parents. So many objectives, so many goals, things we “absolutely must do” and things that we “must never do”. And that can be the same thing, the answer just depends on who you ask! Why should there be so much work? What is the point of all that running around, of the stress?

  • I don’t believe our goal, our objective, should be that our children are happy

I truly want my children to be happy but I also believe that we are responsible for our own happiness. So how can my children’s happiness be my goal? How can I make sure my children are happy? Take away their autonomy? Take away their independence? Replace it with instructions of do this, do that?

How would I even know what to do for my children when I get lost and sometimes can’t figure out how to make myself happy?

So what are my goals?

When Jennifer says “what if we aim for productive kids, moral kids, and hope happiness will come from the good they do and the love they feel from us?” my heart sings and my soul says “Yes!”

What if my goal as a parent was to teach my children decency, work ethic, love?

Well, to start with, I know what to do to teach these. I can demonstrate decency, a good work ethic and love. I can explain what it is (to me at least) and encourage them to develop their own values.

I can praise them when they practice it with a “you worked really hard on that”. How would I praise happiness? With a “well done, you are happy”? I think they would just look at me like I was a loon.

Decency. Work ethic. Love. I can work with this.

As I write this I realise this is exactly what my parents did for me. They taught me decency: how to treat others; how to behave in society so that my contribution is positive; how to stop myself being rude to the obnoxious colleague and still stand my ground.

They taught me to work hard, work thoughtfully and to be proud of myself.

They taught me how to love unconditionally by loving me and each other that way.

And you know what? I’m pretty happy. I’m fairly confident. So maybe it works after all.

Decency. Work ethic. Love

 

p.s. I am not saying that I have the answer for everyone. This just feels right for me.

This is just my response to that overwhelming feeling from society at large that I should be making sure my kids are happy and I just don’t buy it. Check out what Jennifer has to say. Think about it. That’s all.


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Make the ordinary come alive

I know, comparing yourself or your life to others is the first step on the road to dissatisfaction and frustration yet sometimes I do compare. Or notice the differences.

Perhaps I am just fooling myself, but “noticing the differences” feels better, more innocent, even a touch scientific. There’s a clinical detachment with “noticing”.

Ok, I’m getting distracted. What have I been noticing?

It’s the school holidays and as usual we don’t have a lot planned. While there is an underlying spirit of freedom, going with the flow, living spontaneously, there is a seed of doubt: are we just too tired to put some effort into it? It’s hard enough figuring out what we are going to have for dinner let alone plan exciting adventures that all the kids will love.

Try to find something that a 13 year old boy, a 6 year old girl and a 2 year old toddler will all like and can do at the same place. And that doesn’t cost a fortune. (Leave tips in the comments)

But when you have swings, climbing frame and a football… Everyone is happy. So although there are so many amazing things we could be doing while on holiday, most of the time we are playing in the garden.

While I was noticing how our activities are always super simple and wondering if I was shortchanging my kids, a dear friend of mine sent me this (and saved me):

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I don’t know who wrote this but I like it. I love it. It is at the heart of me and everything I believe about life. Sometimes I forget but when you appreciate and value what you already have, life is extraordinary.


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Control the fun

The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.

What can I say? Who know what goes on inside her head.

This is a story about this special, quirky girl.

Control the Fun

It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.

Let me explain.

Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.

Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.

He doesn’t.

Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.

So as you watch, what do you do?

Do you stop her, calm her down? Or do you let her enjoy the moment?

Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?

Or do you keep her safe in a life without the heights of joy?

People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.

It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.

A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.

If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.

But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.

The price that she has to pay is just far greater than we have ever had to pay.

So back to the little 3 year old girl. What did you decide?

Did you keep her safe and out of hospital? Or did you let her live a little?

We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.

We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.

She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.

She is amazing.

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The upside of bringing up independent kids

In March I wrote a post about the downside of bringing up independent kids and it was prompted by the fear of letting go and what ifs.

Last week’s post was about my “little leader of her own life”, F, who took charge and went off on a school trip for 2 nights. She’s 6 and a half and she packed her own bags and off she went to Elsloo. There wasn’t any of the faffing about that I sometimes do when I am nervous (do I have everything? what else should I take just in case…?) just methodical and fast.

So this is why independence is so important:

Hard truth: we will not always be there for them so they will have to get on with it at some point in their lives. Surely it is better to prepare them, bit by bit, rather than throw them in at the deep end when they are 18?

More positively: she had an amazing time! She loved it, was happy and felt confident. This is what I want for all my children.

In my work as a coach I see people who are courageously stepping up to live their lives they way they want to.  In this journey, a metaphor I hold in my mind is that in these moments of choice, we are standing on a cliff edge, looking out to where we want to be on the other side of the canyon.  It’s risky, stepping off that cliff and a great quote I heard once is this:

You can't cross a canyon in two leaps

(Photo from francis-moran.com)

Little F was resolute, calm and practical. She prepared and leapt, without hesitation, knowing that she was going to get to the other side. She now wants to move the Elsloo.

 

Update on last week:

We received this card from F last Thursday and I love it because it is full of her character:

F card from Elsloo 1

  • Fairness – everyone is included and named on the card
  • Love of patterns and order – alternating the colours of the letters
  • Love of variety – not all names follow the same pattern
  • Use what you have (my favourite) – the foam letters for her name: they didn’t have all the letters she needed so she made them herself using whatever foam letters were available
  • Accuracy!: below you can see she corrected the card when she got home:

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She didn’t miss us so with an exclamation “Oh no, that’s not right!” she crossed out the words “Ik mis je” (I miss you). I burst out laughing.  Sometimes this need for such precision drives me nuts but this time, it was wonderful.

She had a fantastic time and that makes me incredibly happy. She will be ok.


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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.