Changing perspectives

The Kids are quite mature for their age so I sometimes forget how young they are (7 & 9) until they remind me – loudly.

Having a parent with a chronic illness is scary for a child.  To be honest it is scary for adults so we can only imagine how amplified a child’s fear would be.

Scared children are not always able to verbalise how they feel so they communicate emotionally.

Too often these reactions are considered ‘naughty’. 


The Kids used to sleep in their own rooms without issue – until my health deteriorated.  Since then their increased need for extra cuddles directly correlates to my illness worsening.  It’s not rocket science, is it?

Is it really so bad to give that extra reassurance?  I don’t think so.  In fact, I think I would be doing a pretty poor job of being a mummy if I ignored these needs.

Fear and frustration can turn to anger.  Anger at how unfair things are:

-Why does mummy have this illness?

-Why can’t it be someone else’s parent?

-I hate Lupus!

-Why can’t you take me swimming/etc? My friend’s mum/dad takes them!

-I hate you!

-I wish I had a different mummy!

-You ruined my life!

-I don’t want to live here anymore!

-I want a new family!

-Why are we always stuck at home?

-This life is the worst!

-You’re a bad mummy!

-You’re the worst mummy!

I think I’ve heard it all from The Kids and it hurt and I’ve cried. Then I had to accept the way they were feeling and help them to understand and cope with those big feelings.

Think about how you feel when you’re angry.  Now think about how much self control you have to exert to control your reactions.


Can we really expect children to manage their response to anger as well as adults?



I am very definitely guilty of not always having enough energy to deal with emotional overflows.  I have to dig really deep into my ‘magic mummy strength’ and somehow manage to get through it.  This is by no means a smooth or pretty experience.

There is often crying/shouting/screaming/throwing things/hitting/biting and if we are not at home I am acutely aware of people staring at us.  So what do I actually do?

– make sure they are both safe

– take a breath and then another (a bit like when I was in labour!!)

– remind myself to ignore all the people staring at us

– explain to the child who is not having the emotional outpouring that I need to help the other so I need them to be very patient with us both

– go to the struggling child and talk


There is no magic formula; most of the time just letting them know I’m there and understand how they are feeling helps them to calm down.  Sometimes they need space and time alone so I give as much as I can and stay nearby. Other times they need me to hold them without saying anything; I think the close physical contact anchors them so they begin to feel secure again.

hug help

Tonight we got home quite late and my son was feeling pretty bad.  He was exhausted, hungry and overwhelmed and  he refused to come out of the car – he locked himself in and said some not-so-nice things. I was exhausted, every part of me hurt and my daughter wanted my attention. What do I do?

I asked L to bear with me while I helped M, then I waited until I could unlock the doors and spoke to him quietly explaining we need to go inside. He refused and  asked me to bring a pillow and said he was going to sleep in the car. I could see he was in desperate need of some alone time so I explained that I could not leave him there and suggested that he could sleep on the futon all by himself.  I told him that I understood he wanted to be alone.

He asked if he could make a den and when I agreed he got out of the car without any problems.  I waited and walked with him while I gave my daughter a piggy-back.  I cannot explain how painful that piggy back was….but it helped L to feel that she was not forgotten or left out.

I think if I had shouted or threatened things would have escalated and we would all be feeling pretty miserable.

As soon as we got inside my son was very clearly feeling much better and happier. He had some food, the den was built and the rest of the night passed without difficulty.


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