OUR_COURSE_ENGLISH_SUBTITLES.txt @ This file written with the Avid Caption plugin, version 1 <begin subtitles> 00:00:13:16 00:00:16:20 The sound recorder is on. 00:00:19:17 00:00:21:03 WARSAW FILM SCHOOL presents 00:00:21:18 00:00:24:15 - Do you have cigarettes? - Yes. 00:00:26:00 00:00:29:01 I know, I shouldn’t but... I just... I don’t know. 00:00:30:01 00:00:32:14 - OK, but just one. We’ll split it. - OK. 00:00:33:14 00:00:35:19 I’m just so over this. 00:00:35:24 00:00:38:22 a film by Tomasz Śliwiński 00:00:55:12 00:00:57:15 I don’t know... 00:01:03:20 00:01:07:04 Are you afraid of bringing him back home? 00:01:07:13 00:01:13:12 You know what...? Sometimes I just can’t wait... 00:01:13:20 00:01:17:11 - We’re not really bringing him back, it’s more like... - Exactly, he’s coming home for the first time. 00:01:17:20 00:01:21:11 Unless we’re going to say that he lived at home when I was pregnant. 00:01:24:16 00:01:30:17 I don’t know. On the one hand, I just want him to be home so much... 00:01:31:05 00:01:33:23 but when I start to think that this will be just the beginning... 00:01:34:21 00:01:37:15 I am already so exhausted by this fucking hospital. 00:01:38:02 00:01:41:16 I think this is just something we just need to deal with. Because now it’s so... 00:01:42:21 00:01:44:09 I don’t even feel like I have a child. 00:01:44:10 00:01:48:06 Sometimes I just walk down the street and I think: holy shit, I have a child. 00:01:52:17 00:01:57:17 I mean I don’t even really know him. God, at this point, I should really know everything about him... 00:01:59:07 00:02:03:02 and I didn’t even see the first time he smiled. 00:02:56:03 00:03:02:17 As for today I perceive you as, of course a little tired, because you have to commute here, 00:03:03:05 00:03:05:20 but full of enthusiasm and energy, 00:03:06:11 00:03:09:09 and I wish you for the upcoming time, 00:03:10:11 00:03:13:16 to create a happy family, 00:03:14:07 00:03:17:13 with a health problem of your son but... 00:03:18:02 00:03:19:15 who doesn’t have them, right? 00:03:19:21 00:03:21:19 Maybe not to the same extent, 00:03:22:08 00:03:26:16 but I think that... this is such a cool challenge of fate, 00:03:26:24 00:03:30:12 and if you can cope with it then... there is a great satisfaction. 00:03:31:11 00:03:38:06 ONDINE’S CURSE (Congenital Central Hypoventilation Syndrome, CCHS), a very rare, potentially fatal disorder, without a cure. 00:03:38:17 00:03:45:18 A CCHS patient stops breathing when asleep and requires a lifetime of mechanical ventilation on a ventilator. 00:03:48:00 00:03:51:12 OUR CURSE 00:03:55:22 00:03:59:15 I just keep going back and forth between extremes of optimism and pessimism. 00:04:03:09 00:04:05:08 How do you see this playing out? 00:04:07:14 00:04:10:00 A huge struggle for many years, 00:04:10:17 00:04:12:18 that ends in defeat. 00:04:13:20 00:04:19:17 My biggest fear is that when he’s more aware, he’ll just commit suicide and end... 00:04:24:05 00:04:26:01 ...end his life. 00:04:30:18 00:04:33:24 I don’t know, you kind of want to be numb to it all, in a sense... 00:04:36:12 00:04:41:00 but at the same time when you come to see him... 00:04:41:12 00:04:45:00 - Yeah, and you see those little eyes... - It’s hard to just blow off him and say: 00:04:45:21 00:04:51:05 “Fuck this, no matter what, you don’t have a shot at anything... 00:04:51:18 00:04:56:03 why even bother when everything is just so fucked up from the start.” 00:04:56:22 00:05:00:14 - Except that for him everything is just a beginning. - Exactly. 00:05:01:07 00:05:05:04 And he’s so happy in his unawareness. 00:05:06:19 00:05:09:16 I wonder when he’ll start to be aware. 00:05:16:21 00:05:21:21 I don’t know. It’s incredible... Exactly, right now everything is just about to begin. 00:05:22:10 00:05:26:01 This is just the prelude... 00:05:26:13 00:05:29:08 - ...to the illness. - Yeah. 00:05:47:08 00:05:49:18 We’re almost here. 00:05:54:11 00:05:55:17 Alright, we’re here. 00:05:57:04 00:05:59:04 OK, and now... 00:06:06:15 00:06:08:09 He’s calmed down. 00:06:08:19 00:06:11:11 Leo, you’re home! 00:06:13:13 00:06:16:11 OK, so if you could take a look here. 00:06:17:12 00:06:20:18 This ventilator is just a tiny bit different. 00:06:21:17 00:06:24:16 You turn it on 00:06:26:05 00:06:31:20 by holding down this button for a few seconds and then the machine starts to test its settings. 00:06:32:17 00:06:36:07 Setting it up is similar. It’s easier actually. 00:06:38:03 00:07:05:20 [Polish lullaby] 00:07:10:03 00:07:13:16 - Why is he gasping so loud? - I don’t know. 00:07:23:20 00:07:29:04 I don’t know, maybe a tube got loose or something... 00:07:34:15 00:07:37:07 No, everything is in order. 00:07:39:08 00:07:42:17 - Something is whistling? - Maybe air is coming out the side? 00:07:43:02 00:07:45:10 Will you take a look? 00:07:49:11 00:07:51:12 It all looks fine. 00:08:00:12 00:08:01:23 I don’t know. 00:08:02:06 00:08:05:20 I don’t know what it’s going to be like later. 00:08:06:19 00:08:09:06 I don’t know. I mean... I don’t know either. 00:08:10:01 00:08:13:19 And I’m also afraid of a lot of things. I’m afraid of all of the complications, but... 00:08:15:13 00:08:18:08 I know that a lot depends on us and... 00:08:19:03 00:08:24:07 and I know that depending on how we treat him, where we take him for rehabilitation, which doctors we use, 00:08:24:13 00:08:26:22 that it could really turn out fine. 00:08:27:21 00:08:31:07 I mean, we know he’s going to have some limitations, 00:08:31:14 00:08:35:24 but I just can’t accept that he’ll be dependent on a ventilator for the rest of his life, 00:08:36:05 00:08:38:03 that he’ll have a tracheostomy forever- that’s just not an option. 00:08:40:00 00:08:42:03 Did he fall asleep? 00:09:19:11 00:09:21:14 I also keep wondering, you know, 00:09:22:01 00:09:25:02 because at some point, if he is able to talk, 00:09:25:12 00:09:29:10 he’ll ask, first of all, why he is sick, and so on, 00:09:29:14 00:09:35:07 and second of all, how do you explain to a child that every night he can die. 00:09:36:01 00:09:38:17 Because that’s just so incredibly weird. 00:09:39:05 00:09:43:16 I just don’t want him to be afraid, to have psychological issues, because this condition is just so... 00:09:44:03 00:09:46:18 ...so full of fear. 00:09:48:24 00:09:51:11 Freddy Krueger. 00:09:51:21 00:09:53:11 - Yeah. - Exactly. 00:09:53:19 00:09:54:23 Yeah exactly. 00:10:01:04 00:10:04:22 Come on, you know what’s going on, don’t you? 00:10:05:03 00:10:06:11 Leo, don’t be scared. 00:10:06:16 00:10:09:02 Keep him still, maybe, because his head... he’s uncomfortable. 00:10:10:01 00:10:11:04 OK, good. 00:10:12:20 00:10:15:01 Leo, nothing bad is going to happen. 00:10:15:08 00:10:19:18 Shhh... shhh... sweet little boy. 00:10:22:16 00:10:27:01 Shhh. it’s ok, you can calm down now. 00:10:27:08 00:10:30:06 - Maybe give him a pacifier? Do you have a pacifier? - Of course not. 00:10:31:01 00:10:34:13 Be quiet little mouse. 00:10:37:00 00:10:39:16 Leo, what’s up? 00:10:41:14 00:10:44:03 Yeah? It’s OK. 00:10:44:08 00:10:45:23 Come on. You don’t like that, do you? 00:10:46:01 00:10:47:14 - So it’s my turn to change it? - Yes. 00:10:48:12 00:10:49:24 Shit. 00:10:51:20 00:10:53:15 Shh... quiet... 00:10:54:06 00:10:56:14 Tomek, do you have to pick up right now? 00:11:07:22 00:11:11:07 It’s too big, make it smaller. 00:11:18:12 00:11:21:17 Shhh... it’s ok little one. 00:11:22:04 00:11:24:10 - Ok, so we just have to take it out, right? - Yes. 00:11:29:06 00:11:31:07 Ok, now. 00:11:32:12 00:11:37:05 You know what, it’s crazy, because some gloves that are the same size, are just too small. 00:11:54:19 00:11:58:02 - So, should I just take it out? - Yes, just take it out. 00:12:02:08 00:12:05:01 Ok, Tomek, don’t look at it now, let’s just put in in. 00:12:05:05 00:12:08:11 Leo, sweetheart, shhh... 00:12:16:05 00:12:18:10 Sweetheart... 00:12:20:23 00:12:23:08 Do you hear the sounds he’s making? 00:12:29:09 00:12:31:01 Shhh... sweetheart. 00:12:31:08 00:12:33:08 Ok, so I put it on this, right? 00:12:36:12 00:12:38:00 Shh... quiet. 00:12:38:18 00:12:40:04 Ok, I’m putting it in. 00:12:40:12 00:12:42:08 Be quiet, Leo, sweetheart. 00:12:42:13 00:12:45:17 - Dear god, why isn’t he making any noise? - He is. 00:12:46:11 00:12:48:18 - Ok, put it in because I’m about to... - Maybe I should wash it off, first? 00:12:48:21 00:12:50:22 Ok, wash it off, but quickly. 00:12:53:01 00:12:57:22 Shhh... sweetheart, little Leo, shhh... 00:13:07:12 00:13:12:03 Shhh, little Leo, it’s ok. 00:13:15:24 00:13:23:14 Sweetheart, don’t cry, everything is ok. I know, I know, don’t worry. 00:13:25:18 00:13:28:00 Here it goes. 00:13:43:14 00:13:50:17 Calm down, my little one, it’s all over, everything is ok now. 00:14:08:09 00:14:11:20 Little mouse? 00:14:13:24 00:14:16:23 Are you asleep? 00:14:19:23 00:14:22:10 Little mouse? 00:14:22:15 00:14:25:16 Don’t fall asleep! 00:15:09:21 00:15:14:05 - So what, do you want me to call her? - Yeah, I guess there’s no way out. 00:15:15:02 00:15:18:00 Leo! Tomek, take him. 00:15:22:07 00:15:25:04 I feel ill just at the thought of it. 00:15:26:19 00:15:29:10 Miss Agnes, I’m calling for a few reasons. 00:15:29:14 00:15:33:24 First of all, filters to the ventilator - we’ve had to use an old filter for the last two weeks. 00:15:35:01 00:15:36:08 No, we didn’t get it. 00:15:38:00 00:15:45:22 Ok, next - will we get new sensors to...? Because we’re on the last one at the moment. 00:15:46:22 00:15:49:07 Miss Agnes, next thing - the pulse oximeter is messing up again. 00:15:49:14 00:15:52:13 It turned off again in the middle of the night without letting us know. 00:15:53:00 00:15:56:16 It was the same as last time - Leo wasn’t asleep yet, so he wasn’t hooked up to the ventilator. 00:15:56:19 00:15:58:14 We were waiting for him to fall asleep before hooking him up and.. 00:15:58:19 00:16:00:15 same as last time, we fortunately realized that it wasn’t working. 00:16:03:04 00:16:06:12 Ok, and one more thing... and I’m really upset about this. 00:16:06:16 00:16:11:09 I just found out that a child that’s leaving the hospital got a battery for his ventilator and we didn’t. 00:16:11:13 00:16:15:19 These are enormous expenses, it’s about 4000 PLN, and I don’t understand what guide you’re using 00:16:15:21 00:16:17:23 to determine that one family gets one and another doesn’t. 00:16:26:07 00:16:28:16 So what you’re saying is that within last month, the system has completely changed 00:16:28:19 00:16:34:05 and because of that we have to spend tons of money, while other parents just get it for free, just because? 00:16:39:05 00:16:40:20 Oh, fuck off ! 00:16:42:13 00:16:45:19 These mood swings are weird. This morning I was so incredibly depressed... 00:16:47:01 00:16:49:15 and now... 00:16:50:11 00:16:55:06 I just cut myself off from it for a moment, and I don’t feel... 00:16:55:13 00:16:57:14 ...so sad, for example, right now. 00:17:05:03 00:17:09:03 I’ll tell you that only those, who stay positive, have a chance that things will turn out ok. 00:17:09:06 00:17:14:04 Yeah, we also used to say that if you think positive then nothing bad can ever happen, right? 00:17:14:06 00:17:16:19 And look what we go for our positive thinking. But I had negative thoughts. 00:17:16:21 00:17:19:11 You know that I’ve always had some underlying negativity. 00:17:19:15 00:17:23:15 and you know that the entire time I was pregnant, I kept saying: “When Leo is born and if everything is ok...” 00:17:23:17 00:17:26:06 Tomek, I always pointed it up, as if I knew that something would be wrong. 00:17:26:15 00:17:30:17 So you know, my positive thinking, saying: “everything is going to be good” 00:17:30:23 00:17:33:05 but secretly I was really afraid. 00:17:34:11 00:17:37:15 So as far as fears are concerned, I am to be blamed. 00:17:37:19 00:17:40:18 - As if Leo is the materialization of all your fears. - Yeah, exactly. 00:17:43:20 00:17:47:03 And now what? Now that your fears have materialized? 00:17:49:13 00:17:52:21 I don’t have to be afraid of them anymore. 00:18:30:19 00:18:32:24 Because he stopped responding, right? 00:18:33:03 00:18:36:08 And suddenly my first thought was that... 00:18:36:12 00:18:38:11 I let it get to the situation where... I don’t know, 00:18:38:15 00:18:41:00 maybe it was the sensor not working or something... 00:18:41:05 00:18:44:07 but we’re in this situation where something has happened. and it’s irreversible. 00:18:44:08 00:18:46:15 We can’t go back and it will be like this forever. 00:18:46:16 00:18:50:03 One moment we had a wonderful child... 00:18:52:04 00:18:54:13 and the next moment, he’ll never be normal again. 00:18:54:19 00:18:59:13 I started to shake him and nothing, I started to yell at him and he wouldn’t respond at all. 00:19:00:06 00:19:06:02 I tried to ventilate him manually, message his heart... but the sensors said everything was fine, so what for? 00:19:25:20 00:19:28:02 Beautiful gasping. 00:19:29:16 00:19:32:03 Our little mouse. 00:19:44:08 00:19:47:12 I just can’t imagine our life without him. 00:19:52:13 00:19:54:13 Leo! 00:20:10:07 00:20:12:22 I don’t know if we’ll fit everything in here. 00:20:13:22 00:20:18:05 Hi there, little boy! 00:20:18:15 00:20:21:19 Flip over your tummy. 00:20:26:10 00:20:29:12 Look around. 00:20:31:23 00:20:34:19 Ok, this bag is just his medical supplies. 00:20:59:06 00:21:00:23 We made it. 00:21:04:00 00:21:08:09 This is a tomato. What a wonderful tomato! 00:21:12:05 00:21:14:05 And this is a cucumber. 00:21:21:17 00:21:24:18 Aren’t these trees pretty? 00:21:40:19 00:21:46:11 Leo, I’m catching you... Yes! 00:22:46:23 00:22:50:19 And this is how it will be for the rest of our life. That gasping sound. 00:22:53:05 00:22:55:23 Oh, you’ll see, it won’t be like that. 00:23:13:22 00:23:17:11 And tomorrow we have to pack everything up... 00:23:19:22 00:23:22:21 And then the long trip back to Warsaw... 00:23:23:03 00:23:27:00 and in the morning we have to wake up, and go to the doctor... 00:23:27:09 00:23:29:16 and then go to the next doctor... 00:23:29:24 00:23:32:14 and then it is Tuesday, and we don’t have to go to the doctor... 00:23:32:19 00:23:35:11 and then it’s Wednedsay, and again we have to go to the doctor... 00:23:35:17 00:23:39:07 and then it’s Thursday and we go away. 00:23:42:16 00:23:45:04 but after that we have to come back... 00:23:46:00 00:23:48:04 and we have to pack... 00:26:09:09 00:26:12:06 written and directed by 00:26:14:05 00:26:18:08 cast 00:26:20:09 00:26:24:07 cinematography 00:26:26:03 00:26:29:08 film editing by 00:26:31:07 00:26:34:08 sound color correction 00:26:36:03 00:26:38:21 artistic supervision 00:26:40:16 00:26:43:12 produced by A Polish Film Institute Co-financed Production 00:26:45:05 00:26:56:24 thanks special thanks 00:26:58:24 00:27:09:19 music used <end subtitles> Displaying OUR_COURSE_ENGLISH_SUBTITLES.txt.