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.