amber rahim

Chronic illness: the parts we don't talk about

Monthly Archives: April 2014


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Why 13 hour TV marathons are ok in my house

As much as I agree that television and electronic gadget time should be limited, I find myself turning to that magic box, TV, on a regular basis.  You could say it saved my sanity on more than one occasion.

Take this weekend.  I let F do a 780 minute TV marathon on Sunday.

Why would I do such a thing? Well, have you ever read the “spoon theory“? Christine Miserandino explains the limitations that people with various chronic illnesses live with. It’s really good so if you haven’t read it yet click the link.

It was King’s Day in the Netherlands this weekend and on Friday all schools held the “King’s Games”. It’s a fantastic initiative to celebrate with sport. F loved it. She was really active all day at school and came home wanting to play outside until it was dark. On Saturday she was starting to wilt but was full of enthusiasm for picnics, playing and chinese roasted chicken (who doesn’t love this?) and although it was King’s Day we kept the activities light. But not light enough. It was difficult for us to have to rein in her fun and we didn’t do a very good job of it. Maybe she would be ok. How would we know what her boundaries were if we didn’t let her test them?

This is where the spoon theory comes in. She had used up all her spoons. In F’s case, her spoons are potassium (K) and sodium chloride (NaCl). Unlike the rest of us, her kidney’s don’t hold on to the K and NaCl so when she is active, she depletes the stores in her body, making her weak and nauseous.

She awoke at 3:30am on Sunday, unable to sleep and starting to vomit in a “normal for her when she is coming down with something or has overdone it” way. Despite holding her on my lap and being with her for an hour she couldn’t go back to sleep. I couldn’t stay awake without getting cranky so I told her she could play in bed but that I needed to go to sleep. Wise that she is, she let me go.

The TV marathon started at 8am and was only interrupted by bouts of vomiting and going to the loo.  The magic box did it’s work of distracting and entertaining and by the afternoon she perked up enough to nibble on crisps and raisins.

By 9pm, after hanging out on my bed for awhile (me reading, her still watching telly) I told her to close her eyes and go to sleep. My booked finished, I moved her to her own bed.

Yes there are better ways to distract and entertain even really sick kids but TV works for F.  Big plus: it is easy for me. Yes, yes, yes, I am a mum and I chose “easy” over “best for my child”.

I accept that I have double standards (I would never let S do this) but it came down to this: I was tired and I wanted something that would work.  So I make these choices that in isolation don’t look good. Ok, even in the big picture this one doesn’t look good (13 hours!). But it fulfilled a need – of F to rest, be entertained and be distracted from the nausea and for me to have an easy day. I guess I had used up my spoons too.


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The Healthy One

It’s a common occurrence that us parents take more photos of our first born than of all our other children combined.

It’s a combination of novelty, the undivided attention they can get and time (you don’t realise what little time you have in a day until you’ve got more than one kid).

I am no different than anyone else in this respect. My little S is growing up so fast and yet so little of her is captured in photographs or films.

We were going to the park the other day and she was running, her arms by her side and her hands flapping back and forth to help propel her forward. Enjoying her enjoyment I thought this would be great to have on film (then you could see just how cute her running style is) but I realised I didn’t have my phone. Yet another moment that will only be stored in my personal (and dodgy) memory bank, that only I can enjoy.

It reminded me of a clip I have of F as we walked to that same park. She pushed her toy buggy with a “sick” baby doll inside. She was the carer, taking this baby out for some fresh air.

I did have my phone with me that day and I have a great short film of it. In fact I have lots of short films of all the cute stuff she did.

Contemplating the difference in me regarding F and S, I have to acknowledge that in the early years with F it wasn’t just the novelty or time, in fact her care took more time than looking after 3 healthy kids. There was also a sense of urgency in me. An imperative to catch her on film because maybe soon that is all I would have left.

Phew, that was hard to say.

It was almost too painful to look upon her directly, without the filter of a camera in between.

I have always been dimly aware that I felt this way. It’s one of the reasons I crashed so hard when she finally started to be well for more than a few days at a time at the age of 3.

So little S I am truly sorry that I do not have more photos and films of you. Please know that I am not taking you for granted because you are healthy and expecting you to always be there. Because the future is not guaranteed and the angels could take you away just as easily.

You see, I am paying more attention to you. I am trying to focus on being with you now, joining in with you, no barriers. I have learnt something from you both about being a mum. When you look at me I want you do see me, not the camera.

I see you and you are great of spirit.

A clever clown who is sweet and kind.

A tough little lady who cries when she falls off the sofa and lands on her head (seriously, how can we stop this happening without tying you down?) Who then, with determination, goes back on that edge, carefully choosing a safe spot this time.

You are vocal about your displeasure (especially at the sofa for not being as wide as you imagined) and you shine brightly and shimmer with joy when you pat your tummy and say Yummy!

I have finally put photos of you up on the wall. It’s something that you have not noticed but has been a weight on my shoulders.

I do see you.

photo copy

 

 


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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