amber rahim

Chronic illness: the parts we don't talk about


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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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Planting the seeds of confidence

This post is going to be a bit different.  It’s not about chronic illness and it’s not about struggle.  Something happened this week that made me happy and I want to share it.

In my first ever post I talked about my journey to finding my daughter, seeing the child behind the illness.  Ever since, I have been doing something more consciously and deliberately.

I have been acknowledging my daughter.  It’s kind of like a compliment but I don’t praise what she has done, I acknowledge who she is.  It goes something like this:

” You know, you are smart, you figure things out.”

“You are funny and cheeky”.

“You are intelligent”.

“Even when you are scared and nervous, you try new things”.

“You know what you want”.

When I first started doing this I was met with shyness, a shake of the head and often an embarrassed “stop! why are you saying this?”

It seemed too much for her and she got embarrassed.  I think this is something we all do when the attention is turned to us and who we are.  It’s so personal and we are not used to it.

As time went by she starting getting used to me doing this.  Then she started to ask me, shyly, to “do that thing, when you say stuff”.  She would smile, my heart would melt and I would oblige.  I was happy, she was happy.

I have been working a lot lately so this last Sunday when I was helping her get ready for the day I took the opportunity to acknowledge her.  It’s been a while.

I started talking and she started smiling.  Confidently.

The she spoke and blew me away.

“I know” she said.

We both grinned and hugged.

I thought “this is beautiful”.

So I have new definitions of beauty (to add to my collection).  Beauty is someone glowing with the confidence of knowing who they are.  Beauty is the connection created between two people when they share this knowing.

And I know that with a simple acknowledgement, by saying “you are …” you can help build self worth.

Yes of course she gets insecure or disappointed in herself but she also knows that she is smart, funny and brave.