amber rahim

Chronic illness: the parts we don't talk about


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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.


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How to stop shouting at your kids: 1 simple rule

I have read many articles on this topic but have found one thing that you need to have in place for those tips to work. I discovered it after getting advise from a child psychologist.

About a year ago we asked a child psychologist for help. F had started to have tantrums. Major episodes of anger and sadness and we just couldn’t get through to her at all while it was going on.

Given the traumas in her past and the strict medicine routine that she is on, it was not surprising.

The psychologist talked to us and to her and gave us some things to try (we had already been doing some and had some new ideas).

Then she said this:

“next time she has a tantrum, record it so that I can see what she is doing.  And I can hear what you say and maybe give you some tips on how to respond”.

This was it. The moment of inspiration.

Yes, I hate my voice being recorded and really did not want to see what I looked like on film but it was something else. The thought of being observed, especially by a psychologist, that made me pause.

You see, it’s hard to keep calm, be patient, be neutral even, when you have a kid suddenly dive full on into a tantrum. They can have been annoying the hell out of you all day long and then launch into a fit and yet I’m supposed to stay calm, rational. I’m supposed to but I don’t always succeed.

So that pause told me something: that I was pretty sure that I was not helping the situation. I probably added fuel to the fire.

So I went home and thought about it. What if, in my interactions with my kids, I behaved as if someone was watching me?

Ever noticed, when you are at your mum’s or in-laws house and your kids start acting up, how much patience you have? Or when you are at the park? Oh, definitely now: when other mums are around?

I started noticing.

My tone of voice, my level of calm, my ability to bite my tongue and not join in the snarky-ness. These were all different when other people were around and when in the back of my mind I thought “if she kicks off, I’m going to be filmed as well as her”.

She never had such a big tantrum again. Yes she played up. Yes she got really angry. Yes she got really sad and cried and shouted.

But I did not.

So this is my conclusion:

There is no one more patient than a parent who is being watched. And a watched parent never shouts.

A Watched Parent Never Shouts

 


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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.


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One of those days

It’s actually my older daughter that has the chronic illness yet when my younger daughter gets sick I am filled with so much emotion, sometimes I am overcome.

My little toddler got a stomach bug and vomited all over herself in bed.  Quietly.  I didn’t hear a thing and she never cried or called out to me.  When I brought my eldest to bed I smelled it and saw her.  Lying silently, calmly, in bed, covered in smelly puke.  Her calmness was that really wrong kind of calm that means that your baby is really sick and is scared and … I don’t have words.  But if you are reading this blog, you probably know what I mean.

My heart broke.

All sorts of thoughts ran through my head.  How did I not know this had happened?  How sick is she?  What’s wrong with her?  A heat infused me, filling me up, pressure building …. and with practiced ease I capped it, put my feelings aside and gently spoke to her.  Told her I was going to clean her up and quickly grabbed new clothes, a towel, nappy and got the bath ready to wash her in.

When it comes to a vomit covered child, I know what I’m doing. Once you have picked them up, they don’t want you to put them down (and you don’t want to put them down either) and once you’ve picked them up, it’s really hard to grab clean clothes, towels, get the bath ready.

So why do I know what I’m doing?  Experience.

You see, my eldest has vomited almost every day of her life.  Nowadays it might only be once a day but it wasn’t always this good for her.

She has Bartters Syndrome, a genetic disorder of the kidneys that causes chronic and severe dehydration, with a risk of death in babies if not managed properly.  (check out this website for info about this illness: http://www.barttersite.org)

One of the side effects is vomiting and at its worst, she was vomiting 20 times a day.  Not just spit up, but projectile vomiting going across the room with the speed of a tennis champion’s first serve.  The mess didn’t bother me as I got very good at mess prevention: seeing the subtle signs of imminent puking and then grabbing the nearest cup, glass or container with one hand and turning her just enough so that the angle of projection would be just right…. and I could catch the vomit mid air.

What bothered me was finding my eldest daughter covered in puke in bed.  At night I had to sleep.  I couldn’t keep watch all night yet the littlest cough could trigger a bout of vomiting.  No matter how fast I jumped out of bed and sprinted to her, I didn’t always get there in time.  Most of the time I didn’t even wake up until I was by her bed and I would think “what am I doing here?”

Then I would look down and see this tiny tiny baby blinking away the puke from her eyes or holding them tightly shut if there was too much.  She looked surprised.  Still.  Almost holding her breath as if she was thinking “what happened?  I was sleeping and now this?”

So I would wipe her face, get everything I needed and start the careful process of washing and changing – all the while watchful for signs of more vomiting.  You know sod’s law right?  Guess how many times I had to start all over again before I had even finished getting her cleaned up.  Don’t know?  Well I don’t know either, I’ve lost count.

Why did I even start this story?  Oh yes, I’m having one of those days.

One of those days when the reality of my daughter’s life with a chronic illness weighs me down.  When I see with full clarity the vulnerability of both of my children, of all children.  It’s so real that I can almost touch it.

It’s one of those days when I acknowledge that this is my life too: to watch the suffering of another and I can’t fix it.  This in turn creates frustration and sorrow in me and I am overwhelmed by my own suffering.

It’s one of those days that I go through all this and finally remember this:

I may not be able to fix it, but I can offer comfort.  I can be with them, be present and loving.  I can look them in the eyes, touch their hand, be with them.

I can acknowledge their reality and honour them for living it.

Acknowledgements

Inspired by my daughters and published in honour of William.


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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.