amber rahim

Chronic illness: the parts we don't talk about

Finding my daughter: the child behind the illness


In taking care of a child with a chronic illness something, seemingly insubstantial, is lost.

The worry

Will she be ok? Will she live a normal life?  Will she be happy?  Will she live?

The worry is clear, solid, like a monolith pressing on your heart.  It is substantial.

The work

Preparing and administering medicine, waking up multiple times at night not because they wake up, but because you need to give medicine, clean up vomit.  The extra washing from a baby that projectile vomits 12 times a day.

The work is heavy, the weight of it builds up and presses you down.  It is solid.

The learning

So how do you insert a nasal gastric tube into the stomach and not the lungs?  How do you get a pill into a baby using a syringe because you need to give it via a feeding tube?
Turning into a nurse and thinking “I never thought I would need to know how to do this” and secretly loving the fact that you know how to handle a syringe.

This you know.
These are real.
They take up time, freedom and energy.  This is a very real loss and you know it.

What caught me by surprise and was the greatest tragedy of my life, was looking at my 2 year old daughter and seeing a person for the first time.  There had been glimpses, moments, along the way where we connected as mother and daughter but it wasn’t until her condition was stable that I could relax and I actually saw her, a person.
Her life was less precarious, the stress was less, the work less intense, she was having good days, feeling good, laughing.  I had time to breathe and breathe deeply; to look and see this is my daughter, my baby.
Looking at her face light up with joy, the mischievous look in her eye, the brilliance of her spirit I wonder: how often have I not noticed?  How often was I too busy with the syringe, trying to keep vomit out of her hair or had turned away once the task was done?  How often have I looked at her and seen only the illness, not her?

This loss often goes unnoticed, and therefore seems insubstantial.  This is the greatest loss.  Losing the one you love when they are right there, with you, wanting to be seen.

I do see my daughter.  I can separate the attention I give her illness and the attention I give her.  She feels it too, although she never mentions it.  I can see it in her eyes.

However, I know that if I don’t do something that gives me energy, if I don’t recharge, have fun, laugh, cry, have time to myself; then I lose her.  I stop seeing.
The illness is always there and is demanding.  It screams for attention and gets it.  Uses up my energy until I am weary.
She doesn’t scream.

So I have learnt to look after myself.  I find a way to have fun, cry, let off steam.  Let someone else care for her, even if they won’t do it as well as I would.  I need it.  I take it.

Then I can see. 

So who is she?
Funny, smart, quick, shy, too hard on herself, cunning, determined, scared.  She is beauty, in all aspects.
She is a person.

13 thoughts on “Finding my daughter: the child behind the illness

  1. This is beautifully written and wonderfully honest and open. This is relevant not just to carers but to many. It touched me deeply to read of you being able to see past chronic illness whilst still understanding it. Congratulations on finding your wonderful daughter and for being brave enough to acknowledge that you couldn’t see her at first. She is blessed to have you as her mother.

  2. Wow, what a wake up call to apply this to my own life too! Love your honesty.

  3. I’m caring for a teenager who has a serious health issue, and your message is deeply helpful to me.

  4. how old is your child?

  5. My deep respect Amber, for you and your family. And remember that not only you have a beautiful daughter, but there’s a beautiful woman behind the caring, nurse, mother etc. I saw it in the three days we trained together. Good to read that you are permitting time for yourself!

  6. Wow, wonderfully written Amber. So many mothers have to put on a brave face when their children are faced with illnesses such as this. I sometimes don’t understand how parents go through their child having terminal illnesses. I suspect it’s a lot like a real battle face when some one goes off to war. We’re caring underneath but we have to put a brave face on to get past it all and fight for the little ones we love. I think it’s a protection mechanism but can often build a wall and I commend you for tearing yours down and allowing yourself to be vulnerable. It’s a truly beautiful thing. I hope you find much love and support!

    • I’m so glad you mentioned vulnerability. Something I have learned over the last few years is that through vulnerability you can see the real strength. My daughter taught me that.
      So I hope I am showing what I am made of and that I encourage people to be open, honest and vulnerable to the people in their lives.

  7. Pingback: What’s different about chronic illness? No.1: Sickness scale | amber rahim

  8. Pingback: Sometimes we want to be afraid | amber rahim

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