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Chronic illness: the parts we don't talk about

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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:

photo

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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Writer’s block or silenced in awe?

I’ve been struggling with writers block. I have a lot of thoughts going around in my head yet when I come to write… nothing.

So although I never intend to share photos on this blog, these photos are just saying more than I can. I think they are vague enough that you cannot actually see her face as she is now, and that is important to me.

Despite her sometimes paralysing fear of new situations, F has gone off on a 3 day trip with school.  There will not be any phone calls home and she is ok with that.

She came home from school yesterday and packed her own bag.  Using the “things to bring” list from school, she adapted it for her needs (2 pjs are just not enough so she took 4).

She mumbled that they will probably try and wash her hair and that will be a problem (that’s for a post still be written)

This morning she told us that she was going to miss us and we hugged.  She even gave me a kiss (she hates kisses).

Then she wheeled her suitcase out to the bus and off she went.

I’m in awe. So proud and just can’t get my head around this to even think about all the things I want to say. She’s 6 and a half.

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What’s different about chronic illness? No.2: Disturbance

On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.

This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.

I stepped into the room to help out and the only thing she said was “can I go back to bed?”

Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).

I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.

I think I got a bit of an answer when I saw her there on the chair, eyes closed.

We delight in the beauty of the


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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.


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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.


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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:

ANYTHING IS POSSIBLE