How Do Parents Feel?

He's very cheeky. He does everything that he shouldn't do, like grab his wires and scream at night and then when I go in, he's smiling at me uh through the night, you know, he's a cheeky chappie. He has good periods where he's happy and smiley; he has terrible periods where he moans, cries, there's something irritable, and that's horrible. There's nothing you can do. But when he's in a happy mood, he's just, he just laughs at everything. He loves to dance - but well, in his chair - we put the music on and just spin him around. INTERVIEW 32, Mother

My thoughts and feelings on my daughter is… uhh, it is hard - not necessarily, obviously for her, but for obviously hospital appointments and things like that, that we have to attend to for her, how much extra care that she has to have. We do have three other children um that obviously miss out on as much time with us as we would like to with them, obviously because she gets uh first refusal. INTERVIEW 52, Mother

So, my son is a 14-year-old energetic, engaging, funny young man. I get heartbroken when I see mainly him having uhm uncontrolled epilepsy. That makes me very sad, especially as it's at night. So, when most people rest, Mummy is watching a monitor and racing in to rescue him from suffocating in his bed. He cannot help his outbursts of aggressive behaviour, they are often related to a buildup in his body, that he's about to have a seizure. On a good day he cuddles mummy, he beams at Mummy, he laughs and will engage in song-time and fun-time. But in that same day he can tear mummy's T-shirt, pull her hair, hit Mommy. But Mommy has a full understanding of that he has no control over that. It is just his only way of expressing he doesn't feel very well at all. If Mummy had a magic wand, the one thing she'd like to change is the epilepsy, not the condition, not the genetic condition. INTERVIEW 11, Mother

We have an amazing bond. As a mum, as a parent, it's hard, because I know one day she's going to die. I know that she is not going to live a normal life. I will never see her get married. I will never have grandchildren. It is, it's a very sad life actually. But… you've got to make it what it is. So, I don't treat her no different: I take her to the zoo, I take her on roller coasters, you know, um I take her on the waterlog. I don't treat her no different to any other child. Yes, she is severely disabled, but she goes to the nail bar, she has her nails done, she wears, she puts makeup on, we do her hair. She has a, a very good life because I make it like that. INTERVIEW 10, Mother