We weren’t poor growing up, but we didn’t have a lot either and my mum always said ‘it doesn’t matter as long as you have your health’. She’s right. Having a big house, or a car, or fancy holidays; they don’t make real problems easier.

My kids have their health, more or less. They are deaf. Profoundly, now. And there are concerns over their thyroid function as that’s something else that can be affected by the syndrome that they have. But, overall, they have their health. And I guess for that we are lucky.

But I don’t feel lucky. And I am fed up of being told how lucky I am and how lucky I should feel. I am fed up of being told that I should be grateful that they aren’t more disabled.

What is that? It’s bullshit.

Don’t try and make it better. Don’t try and make me feel better. Don’t compare me to people who are worse off and think that will help. It’s bullshit.

I don’t know how any of this happened. It just all feels so utterly ridiculous.

I remember when I fell pregnant with Will. I remember how happy we were. How happy my family were. How shocked Shaun’s family were. I remember what I worried about – the sleepless nights, breastfeeding, the right pushchair, whether it would be cursed with the reflux that still haunts my mother in law to this day.

That’s all bullshit.

Because my kids have actual problems. Problems that will affect every single part of their lives for all of their lives. Problems that mean I have no idea how to be their mum. Problems that put me so utterly out of my depth I feel like I’m gasping for air.

So don’t tell me I’m lucky. Don’t tell me that it could be worse. Because, although true, that’s not what matters. What matters is this is happening to us, now and we are scared and alone and angry.

Why me? Why my kids? Why us? It’s all bullshit.


Who the F do you think you are?

And so for a rant.

My son is very, very, very strong willed. He knows his own mind. He is stubborn. He will not wear a coat. Sure, I can wrestle him to the ground, pin him down, force his arms into the sleeves and grapple with him until the buttons are done up. Then I can watch him stand up, wipe the tears and snot on his sleeve, sob a little more, undo the buttons and take the coat off. Like I said, he knows his own mind.

So, I don’t bother. I say ‘Do you want your coat on?’ He says ‘No’. I put it in the pushchair for just in case and we leave. We are often only going outside for 5 minutes before wer are on a bus and then 2 minutes before we are on a train and then maybe 7 minutes until we are in the hospital / playgroup / shop. And, to be honest, it’s not that cold yet.

But you know what? None of this is any of your business. It doesn’t (shouldn’t) matter to you if my son wears his coat or not. Because he is just that, MY son. His Dad gets a say. His grandparents are allowed to offer helpful advice or attempt to cajole him into an outer garment. But no-one else.

Walking to nursery.

So, little old women at bus stops. Who the F do you think you are?

“Where is his coat?”

“Isn’t he cold?”

“He is cold”

“He needs a coat”

“You have your coat on, why doesn’t he?”

“He should have a coat on”