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?