Cystic fibrosis is a hard enough thing to deal with, but one thing I find particularly hard is the not knowing.
Not knowing in five or ten or twenty years time whether we will still have our son.
Whether he will be fit, active; able to work rest and play like anyone else.
Or maybe exhausted, oxygen dependant, wasting away for want of a lung transplant.
Not knowing whether a treatment will be found to 'cure' him. There is no real cure for any genetic condition. There are drug therapies in the pipeline. Gene therapy, lung treatments. Any or all of them may change the future for CF sufferers. Maybe it will become just a 'mildly debilitating' condition as I heard it described recently, instead of a lethal killer.
We don't know. He doesn't know.
He's lying on the sofa right now, worn out after a trip to the hairdresser and half an hour at the playground. Every time we have a bad day like this I wonder if it's just normal tiredness for a child who is growing fast and has had a busy few days, or a short setback; or the beginning of the downhill slope for his health.
I try and be positive. My sister has been reassuring me - her daughter is going through a growth spurt at the moment and gets very tired. And he was clowning around in the swimming pool yesterday with as much energy as anyone. So maybe it's just me. I should stop thinking.