I confess that I once caught myself worrying that my daughter’s condition might have been caused by me eating potato chips during pregnancy. There now I’ve said it. Crazy but true.

I told my mother-in-law this one day and she confessed she worried that it was because of something she may have done.

This got me wondering about whether there were other parents out there thinking similar things.

It seems that our brains want a cause and effect type of reason for why things happen. In the absence of anything factual our brains just seem to make it up.

So now I’ve come clean with my crazy thought – I challenge you to do the same.

What irrational belief have you caught yourself thinking about why your child suffers?

Let’s herd these mad ideas out of our heads out into the internet – where they may comfort and amuse other anxious parents fighting off their own demons.

This morning I found a quote from Mark Twain that really made me smile.

“I’ve been through some terrible things in my life, some of which actually happened.” Mark Twain

Over the years we have been through some very difficult times watching my daughter suffering joint pain.

None of those times were as frightening as my fears for what might happen next.

Those fears have given me some very dark moments and the odd sleepless night.

I’d encourage you to develop a strategy to keep it real;

- get clear about known facts of the situation
- stay in the here and now – one day at a time
- let go of worries – these things mightn’t happen.

Worry just undermines the quality of our lives. It doesn’t make it easier to cope. It isn’t useful preparation. It’s just our brain making up stories.

It is often the noise of worry that makes me snap at the people I love.

With practice we can choose to switch off worry as we would switch off bad television.

It can be done.

What is your strategy to manage worry?

I’ve just had this email from Jules talking about her son.

My DS (7) recently drew daggers on his heels, knees and elbows to show me how and where it hurt.

At a birthday party today he stopped playing and came and sat with me because he ‘felt tired’ when I asked where he felt tired he said ‘all over.’

He isn’t diagnosed yet but has an appointment with a rheumatologist soon.

I was reminded of so many similar moments at parties, picnics, concerts, relatives and friends houses.

I would cradle my daughter – knowing that she was hurting and tired. I’d be weighing up how to meet her needs and those of the others in my family.

Many times I would leave and take her home.

There would be this heavy stone feeling inside. As a parent so much of our wiring is about protection and comfort.

When you can’t do either, especially over a long period of time – it is pretty stressful.

There were times along the way where I felt I was going quietly mad. I did not go mad.

I made myself get help. I actually made my mental health a priority.

I forced myself to find other people with similar issues even though I was worried their pain would overwhelm me.

I made a commitment to really look after myself. (Not an easy brief for any mother either stay at home or working outside the home.)

It is a lot of work to parent a child in chronic pain – meds, physio, school, appointments etc.

That is just the outer layer of the work to be done. The major body of work is not ending up a burnt up toast crust.

That’s our challenge as parents.

Ask yourself the serious question-

“What am I going to need so I can grow through this experience rather than being eaten up by it?”.

I’d love to hear about your strategies for staying sane – I’m sure you have some good ones.

I have heard several stories about young people with existing joint conditions being flattened with chronic fatigue.

What could be more difficult for any young person than an extended period of inactivity and isolation.

Do you know someone who is having to spend a lot of time in bed?  Would you like to give them something that just might help?

I can recommend the new novel by Elisabeth Tova Bailey called The Sound of A Wild Snail Eating.

It is an easy and soulful story told by a writer who finds herself very ill and unable to do much at all.

A friend gives her a snail in a pot plant of violets and this becomes a turning point.

I won’t tell you any more about the story except to say that I think it says to all of us -

If you are lost pay close attention to what is right in front of you.

Another work that carries a similar theme is the film available on DVD called  The Wild Parrots of Telegraph Hill.

In both the book and the film someone faces a time when they are lost and unable to see how they might move forward.

In both cases lessons are learnt and many surprising things happen.

These are both works of great optimism and wisdom.

Maybe you have also come across something that might be comforting and inspiring to others.

Please let me know and I’d be happy to pass it on.

When we gather as a group of mothers and talk about our experiences parenting kids in pain it is common for one of us to cry.

It’s wonderful and welcome for some honest emotion to be on show. Everyone can relate to why this parent feels sad or overwhelmed – we have all felt the same at times.

There are another sort of tears that come from what I call ouch moments. These tears fall like a tropical storm – enormous splashes with each drop.

They come from the recollection of times when something small happens and it pierces our coping and shoots straight into the heart.

Once my daughter was in a very painful flare up time and her school musical was on. The stage was full of dancing, singing, smiling shiny teenagers. My daughter sat to the side of the stage looking tiny and ghostly pale.

I felt overwhelmed with envy for health and normality of the other kids. These feelings took me away from how gutsy my kid had to be just to show up that day. It was awful jumble of feelings.

Sometimes ouch moments can be brought on by a few innocent words. Once someone was showing us over equipment at the Independant Living Centre. As we walked past the wheelchairs she said, “oh you don’t need those yet”.

The word “yet” ricocheted around my head to such an extent that I struggled to find my way out of the car park. (Our specialist later said he felt it was unlikely that my daughter would need a wheel chair.)

Ouch moments can be accompanied by all manner of difficult emotions – envy, fear, shame, embarassment, rage and feelings of competitiveness can all show up.

We all go out into life wanting everything to be perfect for our kids and when it isn’t, well it hurts like hell. The hurt is felt in little tiny windows of pain.

That’s why getting together with other parents is so helpful. Sharing ouch moments can normalise and neutralise very difficult feelings. The tears then become a spring of joy and laughter.

If you are feeling too sad and the hurt is too raw to talk to other parents maybe a counsellor could help with some of this heavy lifting.

Then perhaps later you will find yourself friends who understand what it is like to parent a kid in pain and you will feel joy again.

I love a song by writer Fred Smith that has a chorus line, “because I am imperfect”. *

I think those lines help me when I am not always the Mother I want to be.

As the Mum of a young person with chronic pain I have times when I am really there as a patient and kind Mum.

At other times I run out of energy, patience, brain space or mother juice and I feel OVER IT. My daughter and I jokingly refer to the character I become at these times as Dragon Woman.

Kids with joint pain tend not to do things in a hurry. Getting out of bed hurts and getting dressed hurts. Getting moving hurts. It is easy to understand why they would want to take things slowly.

You can’t just jump in the car and get to places quickly. Once you are there you can’t just walk fast either. Even getting out to the car takes time.

Watching your child suffer is THE worst thing. After that I’d have to say doing things slowly comes second for me.

I like doing things on the spur of the moment. I like deciding to see a film that starts in twenty minutes. I like being on time, I even like being early. Moving slowly does not come easy for me.

I am learning to notice the times when I am the Mum I want to be. I am learning to plan so that there is adequate time to do things and I can be that person for more of the time.

I am also learning to forgive myself when I do get impatient. I am an ordinary Mum and at times I am imperfect.

At other times, just like ALL us ordinary Mums, I can also be remarkable.

It is through the embracing of our own ordinary challenges that the extraordinary becomes possible.

*Imperfect is off the album LoveThongs by Fred Smith and Liz Fencham.

It really doesn’t matter if your child has a concern with one joint, several joints or a mix of symptoms that have you dispatched to a rheumatologist.

You find yourself going on a journey with your whole family. Your child may have the diagnosed condition but each person in your household is affected by the suffering and the uncertainty.

Franklin D. Roosevelt’s famous quote, “There is nothing to fear but fear itself” has to be one of the most relevant sentences ever uttered. It is particularly useful for parents of a child with arthritis.

Fear of what lies ahead cheats us from being present to what we have now. There is no way to know what tomorrow holds so it is a waste of time to go there.

What we have is today. If we focus on the here and now we give ourselves and our children a priceless gift.

We also save ourselves from burning up energy of worries that may never materialise. Fear equals stress and that erodes both our health and happiness.

One stategy for parenting a child with arthritis is to just do what has to be done right now. If we stay in the moment we give ourselves the best chance of being effective parents.

What strategies do you use to keep fears at bay?