Relentlessness: a good word for describing something that’s harsh, unforgiving, and persistent, like the hot sun in the desert, or a cold that keeps you in bed for days with a nose like a strawberry. When you’re relentless about something, you mean business.

Being a mum to poorly children, as I’ve said many time before, is not easy. It comes with a whole heap of extra anxiety and guilt and is an endless cycle of hospital visits, frantic emergency appointments as well as cancelling of plans and much needed escapes.

I’m that mum. The mum who doesn’t want to always dominate coffee mornings or evenings out with the talk of the responsibility and stress I face every day. The mum who quietly gets on with physiotherapy, organises hospital appointments, dishes out medicines like sweets, calms fears, soothes pains, and rarely asks for help. I know many parents all do this, but it is relentless when you have children with genetic illnesses. The fear doesn’t ever go away. Not when you are living with a life changing and life limiting diagnosis.

And in my case it isn’t for one child, but two. Double the responsibility. Double the anxiety. Double the fear.

And as the mum it is hard. I have a firm grasp of their diagnosis and treatment and so when people talk to me about my boys I’m often seen as the expert, the doctor, not the mum who has sick children. I don’t want to talk about them in terms of statistics or medical data. I don’t want to be told I’m being a great physiotherapist/nurse and meeting their needs. I want to be held close and allowed to freak the fuck out because I’m bloody terrified.

For four years I faced doctors on a regular basis, my instincts telling me that my middle child was desperately poorly, only to be told he had a dairy allergy, asthma, reflux. I had medicines thrown at me and at one point her was on a cocktail of seven different meds daily. None of it helped and whilst he was wasting away and vomiting thick yellowy-grey phlegm several times a day whilst coughing his guts up all night his right lung was slowly dying. And by the time I was properly listened to it was too late. And it could not be saved.

And that hangs over me constantly. That fear that somewhere in their tiny, fragile bodies, irreversible damage is being done.

I watch other mums at the school gates, worried about their child’s spelling test or whether or not they’ve been put up a reading level and I wish I was one of them. Because I stand there and worry about whether his temperature will spike during the day. Whether his medicines are working. Whether I’ve made him do enough physiotherapy to clear the mucus from his lungs. Whether anyone on the class has been sent to school ‘calpolled up’ full of a nasty bug that could destroy his remaining lung. Whether he is looking skinnier than his classmates and what I can feed him to bulk him out and give him strength more. Whether he’ll be able to keep up when they play in the playground at lunchtime. Whether my phone will go during the day to tell me he is unwell or has been sick. Whether he is happy and enjoying his childhood enough in spite of all the crap he has to face.

When someone says their child is poorly I feel unreasonable anger that their child probably just has a cold and will be ok with some love and a day or two off school. And then I feel guilty for being such a bitch. Because I don’t have the monopoly on sick children.

Being that mum, the one with the sick children is hard. Trying to be normal and accept it is hard. Trying not to wish that it wasn’t your children is hard.

Trying not to scream everyday that is so shittingly unfair is hard.

Maybe a return to blogging every now and again, to purge my brain of all this crap, may just very well be the answer…