Lived Experience

There's something so compelling about a person who is just happy and has that attitude towards other people. So, I think that there's something to learn from her in that, because other people approach each other with such suspicion I think and anxiety, and she has none of that, she's free at that. And she has her favourite people. So, she has her favourite staff at the school, she has, like my mum, her Gran. She absolutely adores and gets so excited and to the point - she has very few words, but she can say and has been heard to say "Granny" before - which is extremely cute. INTERVIEW 4, Mother

I think he's a very sweet and kind little boy, but he knows it. He's always loved by everyone. Like literally, so many people have told me that they'd take him and have him, but then, he's got… he struggles quite a lot with his emotions and stuff like that. So, we can have quite a bit of behavioural issues, or he'll go in on himself. We've struggled from the get-go with his speech and language and with his physical development, as well as some mental development. INTERVIEW 60, Mother

She's a very, extremely positive child and extremely resilient. And apart from the fact that she cannot walk or she cannot use her arms as much, uh she is probably more able than children her age. She's the youngest in the class, despite all her difficulty, she goes to school every day, does her best, and comes back, and that means a lot to me. And it's a privilege uh to be her parent, and I've learned a lot, uh from her. And uh yeah, I'd like to support her achieve her full potential. I know that she may or may not have a long life, but that doesn't stop us from like, you know, uh enjoying uh the little things. And like I said, for me uh personally, as a parent, I've done my best for her, and I continue to be there for her. And uh yeah, she's an inspiration for me, she's my source of strength. INTERVIEW 12, Mother

My husband and I would consider us both very introverted as people. Whereas he is the most extroverted person you can imagine. So, we'll be in town and he will say, "Good morning," or "Hello," or "You've got a lot of shopping!" to pretty much any single person. Even teenagers in a group, he'll be like, "Oh, hello! What are you doing?" So, he has certainly got a charm about him and the same with school and other people that know him - they also speak very highly of him. He is the spitting image of my husband, which I find very funny, except he's a very, very skinny little boy um who we wish would be able to eat a little bit more, but I think that's just part of his condition. INTERVIEW 39, Mother

First, you have to say, I had to do a massive expectation management for the last two years to not compare her with other children, specifically 'cause she has a cousin who's five months older than her. And so, I always have to remind myself that she's 5 months older and I'm trying not to compare them. And also, erm, my daughter, by virtue of being an international family and living abroad, is being raised trilingually. So, compared to her monolingual peers she is somewhere slightly behind on language, which on the top of her NICU history, she's been on the late side of most milestones, which has been really, really hard. Again, because both her cousin and a couple of friends' children have been quite early on some of the really big milestones - like standing and walking and so on, it's and it's always the worry of: is this something, a hangover from her seizures? And has she, does she have brain damage? Is she going to be actually delayed? Or is this just her being a little slower than, you know, on getting to some of these things. INTERVIEW 45, Mother

I never put out all the emotions, because my wife keep crying all the time - many appointments. So, I have to be the strong one. Sometimes, doctors can think I don't have any emotion, because I don't cry, I don't smile, you know, because I try to be the reasonable one, see the clear things what we have to do - because my partner always put emotions in front of everything. So, after half an appointment, she start crying. She say, "Yes", or "No", but she don't listen. But it is what it is, nothing we can change and just make the best, the best we can do to make her happy and, in the end, I think she's a happy baby. INTERVIEW 61, Father