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.


2 thoughts on “Bullshit

  1. It’s hard having kids anyway without all the added pressures of profound deafness. The hypothyroidism won’t be such a big problem once the right dose is sorted and it really don’t matter if they miss a few pills here and there as they are slow acting. I stopped taking mine for a month out of rebellion with no bad effects. I just slowed down.

    It is scary and as a mother of two girls I understand the pressure you probably put yourself under trying to find out everything about Pendreds and deafness. Don’t stress yourself trying to be a perfect mum – be a good enough and happy-ish mum – your kids will prefer you that way. I can see jsut from the way you write that you are doing fine – i;d be happy to have you as my mum. As the Office quote goes, accept that some days you are the pigeon, and some days you are the statue.

    Read David Wrights account of his deafness (though very stilted) and also Enforcing normalcy by LJ Davis 1995 and his other one in 2002 to combat the dominant medical model of pendreds.

    you don’t have to know everything – my mum didn’t and as i said before, i got a good job, got a MSc. your kids will find their own way. someone said to e that the best leaders often have faced adversity in their early life through illness. I can see how you must wonder why both of your children have pendreds. That’s the roll of the genetic dice. I’ts crap. Find soeting to vent your frustration – like playing the piano hard (the kids will feel the music), or running fast!
    best wishes, J

  2. Just found out last week that we also have 2 kids with pendreds. So happy to have found “someone else”. So nice to read about the journey of other kiddos and moms!

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