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.