0:00:13.202,0:00:17.092 How do you find the role of[br]being a carer? 0:00:19.398,0:00:21.998 Being a carer is very demanding 0:00:22.193,0:00:24.079 it's not something you[br]chose to do 0:00:24.273,0:00:26.968 yourself as a career.[br] 0:00:27.162,0:00:28.260 You chose to be a parent. 0:00:28.455,0:00:31.346 You chose to be a doctor[br]or a lawyer but 0:00:31.535,0:00:33.013 you don't chose to [br]be a carer. 0:00:33.243,0:00:35.576 You wouldn't want to[br]chose that. 0:00:36.198,0:00:38.403 It can be rewarding. 0:00:38.564,0:00:40.152 It's very time consuming, 0:00:40.280,0:00:42.140 you have to make many[br]changes in your own life. 0:00:42.363,0:00:45.221 Financial changes[br]and career changes. 0:00:45.475,0:00:48.110 You have to look at life[br]in a different way. 0:00:48.350,0:00:50.108 There are many do's[br]and don'ts that[br] 0:00:50.332,0:00:52.452 you have as a carer. 0:00:52.722,0:00:54.543 You have to make the[br]most of it. 0:00:54.734,0:00:57.239 It's your child and[br]they need you more 0:00:57.463,0:00:59.708 than other children need[br]their parents. 0:00:59.895,0:01:03.216 You have to look at it[br]in the best possible way 0:01:03.439,0:01:07.139 to just get your bearings[br]with all the support that 0:01:07.320,0:01:09.999 you can get and you feel[br]that you want to have 0:01:10.224,0:01:11.373 around you. 0:01:11.565,0:01:13.625 Try to make the best[br]out of the job. 0:01:13.860,0:01:15.139 You can have really[br]good moments that 0:01:15.362,0:01:18.125 feel really rewarding by[br]being a carer and 0:01:18.324,0:01:22.359 feeling that your child[br]is well and that you find 0:01:22.615,0:01:26.380 that you are providing[br]good care and that they 0:01:26.573,0:01:28.526 are healthier than you[br]expected and you are 0:01:28.750,0:01:31.350 finding your bearings. 0:01:31.541,0:01:35.291 It is difficult, but it's also[br]very rewarding. 0:01:35.479,0:01:38.399 That's the thing, it's not[br]what you chose to do 0:01:38.658,0:01:41.546 but when you do it[br]is incredibly rewarding 0:01:41.738,0:01:44.634 because you know you[br]are actually helping your child. 0:01:44.855,0:01:46.560 We are helping Amelie. 0:01:46.719,0:01:48.545 We are making her comfortable[br]and we do things that make 0:01:48.706,0:01:50.478 her smile and which she enjoys. 0:01:50.668,0:01:52.665 That is the most important thing. 0:01:52.853,0:01:54.561 As long as she is happy it[br]makes us happy. 0:01:56.740,0:02:00.470 I just do it. 0:02:01.301,0:02:04.650 It feels right. 0:02:05.441,0:02:08.309 I can't explain. 0:02:10.260,0:02:12.894 You have no choice. 0:02:16.072,0:02:18.034 For me it's just part of 0:02:18.198,0:02:20.406 being Isabella's mum. 0:02:20.628,0:02:26.610 I don't have any bad [br]feelings about that at all. 0:02:26.705,0:02:32.552 It is my job in life to give her[br]the best she could possibly have. 0:02:32.746,0:02:37.405 There's lots of things that have[br]been put to one side but 0:02:37.534,0:02:39.976 it doesn't bother me in [br]the slightest. 0:02:40.140,0:02:42.357 She is the most important[br]person. 0:02:42.588,0:02:47.082 I think it's quite rewarding[br]when Isabella gives something 0:02:47.177,0:02:51.165 back to us, in terms of [br]expressions in her face. 0:02:51.260,0:02:54.342 That let's us know we are doing[br]a good job for her. 0:02:54.503,0:02:58.611 It's part and parcel of being [br]her parents. 0:03:01.573,0:03:04.037 It can be quite stressful. 0:03:04.229,0:03:06.641 It can be quite tiring. 0:03:06.895,0:03:10.310 Emotionally tiring more [br]than physically. 0:03:13.073,0:03:16.325 You get so many mixed emotions 0:03:16.547,0:03:18.506 with this whole package. 0:03:18.928,0:03:23.835 You feel anger. You feel why? 0:03:23.930,0:03:27.055 There are so many questions[br]and answers that you are 0:03:27.247,0:03:28.797 rooting for all the time. 0:03:28.988,0:03:32.133 That's where the exhaustion[br]comes from because 0:03:32.292,0:03:34.481 you wear yourself down. 0:03:37.112,0:03:39.300 I found being a carer very tough. 0:03:39.462,0:03:42.320 I was a first time mum to twins 0:03:42.478,0:03:44.987 and then suddenly I'm a first time[br]mum to twins and one has 0:03:45.273,0:03:48.104 a life limiting condition. 0:03:48.934,0:03:53.584 I grew into that role and although[br]physically demanding the 0:03:53.647,0:03:57.315 hardest thing I will ever[br]have to do, mentally, physically 0:03:57.474,0:04:02.684 and emotionally I actually[br]loved caring for Ruby. 0:04:02.937,0:04:04.987 That was my life. She was my life. 0:04:05.156,0:04:07.791 I would have willing done that[br]for 50 years. 0:04:08.013,0:04:10.999 I can't say it wasn't tough, because [br]it was but it was 0:04:11.192,0:04:15.147 very fulfilling in many ways.