amber rahim

Chronic illness: the parts we don't talk about

Category Archives: chronic illness


by 2 Comments

Invisible Scars

A year ago today I got the message.

Alone in my bed, late at night, crying in devastation at the loss. My mind and heart shying away from the awful truth, not wanting to accept it.

My brother-in-law found my nephew, his 17 year old son, hanging from a tree in their back garden.

I still can’t think of it without crying: that you were in so much pain, so taken by this terrible illness.

You have been irrevocably changed, unable to talk, unable to do so many things.

And we have all been changed too. Something inside of us has broken and will never get fixed. Not because of what you did, but because of your pain.

We may get on with our lives, laugh, make plans for the future, but this will always be there: that cut deep into our heart and soul. We miss you.

 

 

If you are affected by this in anyway, talk to someone. Tell them your reaction to this story, share your feelings, your thoughts.


by Leave a comment

Bonding

They say that the first few hours after the birth of your child are critical for bonding.

If that’s true, I’m fucked. And F has a really great connection with some NICU doctors and nurses whose names I can’t even remember.

At 29 weeks my labour started and they managed to halt it after 30 hours.  My birth plan, which I hand only just started thinking about, became this: keep my legs crossed for as long as possible. Her lungs aren’t ready yet.

A week later you came into the world just before midnight, by ceasarean. 5 eager doctors waiting to whisk you away.

Before they dashed off I got a glimpse of you in the incubator about a meter and a half away. These doctors were greedy to have you to themselves, their reluctance to take those 30 seconde so that I could get a glimpse of you were clear (ok, let’s be fair, they needed to take action quickly to save your life so they couldn’t hang around).

That was the last I saw of you for 24 hours. You were a tricky little lady, with your tiny veins and losing fluids so quickly. They have never had such a challenge to keep a baby hydrated before (and I hope it never happens again).

I did not recognise you that second day. You were so tiny, and so different than the baby I had seen the day before. Wrinkled. Where had all the softness gone?

It took two of them to pick you up, hold your limbs in place and keep all those tubes and wires in place, and place you on my chest. I don’t think you could have found two happier people in the world at that time than us.

We didn’t get long, kangarooing is very tiring for premature babies, and you had to go back in to your incubator,your new womb.

Over the next 5 weeks we didn’t get t spend much time together and I didn’t get to hold you much. You were really ill and sometimes I wasn’t even allowed to touch you at all.

The next few years were a roller coaster where I felt that I never gave you the attention that you deserve because there was so much to do to keep you out of hospital, to get you feeling well.

I always thought that we only started bonding when you were about two and a half. This week you turned 7 and I realise that I was wrong.

We have been connected, bonded since the moment you existed.

I did not have a “big moment” or rush of feelings when I looked at you the first time. There was no sudden falling in love. I was in love with you already.


by 2 Comments

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):

image

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.


by Leave a comment

The Art of Lego: (re)visited

A while ago I wrote about the Art of the Brick exhibition. I couldn’t decide if we should go or not.

Well, we went.

It was really great. It’s amazing to see these great pieces of art and sculpture. My thoughts flitted between “oh, so that’s how you do it” (to recreate The Scream with lego) to “how will I ever be satisfied by my own creations ever again?”

S didn’t break any pieces but she did hug the lego man in the play area at the end. And started to build onto him (well, they put lego there to play with! it was hard to stop her).

F loved it. She listened to the audio tapes about the artwork for every piece. Well, she certainly used the device and entered the number for each piece, I don’t know how much of the recording she actually paid attention to.

Sometimes you just need to stop thinking and go and do what your heart desires.

photo-3S is at that age when she really wants to see the picture you have taken, and comes to look before I have even taken the picture. But trust me, it was really cute to see her hug this lego man.

 


by Leave a comment

The blessings of tragedy

Last night I had an opportunity to get to know some fabulous women a little better.

As we each took turns sharing something about ourselves it struck me that there was something we had in common: a pivotal moment of hardship. Something happened that made us re-evaluate our lives.

The result? We became women who choose what we want in our lives.

Consciously choosing to spend our time on things that give us energy.

And possibly more importantly, choosing what we don’t want.

Someone expressed what I secretly hope to achieve with my new business: “I only work with people that I want to work with”. How amazing is that? Thank you for your inspiration, this is what I want to be able to say.

As for the rest of my life, I have been working towards this too.  My life is not filled with lots of people, but the ones who are in it are important to me, that love me and I love them.

The precious time that I have, I want to use for them (and it is precious. About 25% of my waking hours are spent on being a carer).

So the blessing of my tragedy of chronic illness is that I know that time is precious. I don’t waste it. (much)

Now, look back to my 20s I wonder what I was doing with my time and I realise that a I was doing a lot of “filling it”. How tragic.

So now, like the ladies I met last night, I am consciously choosing, fitting the important things in first. And trying not to fill all the gaps in the jar with sand – but trying to leave empty spaces where the air can get in and I can breathe.

for-web-Big-Things-First

thanks Christi for the image

 

p.s while I was looking for images I came across this. Just love it.

buy the damn shoes

 


by Leave a comment

Ooh wish I was a cat


I’m taking a break this week.  I am tired, pleasantly tired . Oh and replacing the kitchen so the house is a mess.

If any of you know where to get one of these for humans (not an ordinary hammock but just like this and especially with the fluffy lining) don’t tell me where I can get one, just send one to me. Please.

image

Chilled out CPCC