Do not wish me patience
Mother: There were three specific features from the very beginning. Firstly, he has six fingers on his right hand. Secondly, he has an umbilical hernia, which is pretty big and strong. And thirdly, when he was born, just by caressing his head it was obvious that fontanelles on his head were of the wrong form. I don’t know why, I don’t know where it came from but I asked the obstetrician if he had Down’s syndrome. I have no idea why I had this thought. She looked at me like I was crazy and said: “Are you nuts? Such babies don’t cry when they’re born and can’t be breast-fed”, “what a nonsense”, “what a stupid question”.
01:08
Mother: No! No. Yogurt doesn’t live in your ears. No, it doesn’t. Let’s eat. Is that all? Yes, that’s all.
01:39
Mother: When he was born, I had never met disabled people in my life. Never. At all.
02:03
Mother: Seva is a very picky person, also he’s very loyal and sensitive. If a person is not open to him, he will bypass them like a wall. Well, his relationship with his mother was not sensible and understanding.
02:36
Grandmother: Seva?
He doesn’t recognize me. If I want to caress him, hug him, he doesn’t let me and runs away. If he needs something, I understand it. He takes my hand and leads me to the TV or the fridge or to the toilet. It all goes well but only when he needs it.
03:03
Mother: Well, go on. Oops! There’s nothing in there.
03:16
Mother: Yesterday I was cutting his hair and I put his legs there so I could hold him. And he held on to other things with his legs. I think he could hurt himself somehow in his hysterics, in his anger.
03:37
Mother: It’s okay, it’s all going to be okay. You can see that he’s hurt because he can scream in different ways. It’s okay, it’s okay. It will be alright. It definitely will, definitely. Quiet. Give me your hand.
The doctor: No questions . Nothing is broken.
04:07
Mother: It’s called “You are the traitor, I will not come to you”. Let’s go. Let’s go.
04:20-04:28
Mother: Hold him so he doesn’t turn. There’s no point in waiting.
04:38
Mother: You see? No one is even touching you.
04:48
Mother: Sometimes it feels like that’s all, I can’t do it anymore. Sometimes even out of nowhere I just realize that I can’t do it anymore.
05:02
Mother: No matter how he looks, with hands, legs, eyes or without them, with Down’s syndrome or without it, anyway he is a child, a person, an individuality that understands and feels not just for one hundred percent but for five hundred percent. Empathy, feelings, and compassion are really strong in children like him from the very birth.
When me and Seva came back from the sanatorium, I realized that he was looking for other children, friends, and people to talk to. We know a lot, our house is big, there are a lot of toys and we can help and adopt a child from the orphanage. I had no doubts that it would be a child with Down’s syndrome too, Seva’s peer, but I was looking for a girl. I have only boys so I thought about adopting a girl. It didn’t work out. And just like that Danil became a part of our family.
06:09
Mother: Come here, Danil is going to play a cartoon. Come quickly. Look, “Smeshariki”. Look, Danil is turning it on. Are you outraged by it? Why? Your brother is helping you. Yes. Let’s watch. Wait, wait. Look, look. It’s reloading.
06:38
Mother: Seva is an observer, Danya is a perpetrator, an artist, a dreamer, a performer and has a lot of various roles. And Seva is an observer, an analyser. Often not just me but also his teachers notice that he observes a lot and it seems like the analysis of what he sees is projected on his face. He can come to some bush or tree, stand by it and watch birds flying, tree branches waving for a really long time. You can see the process of observing, analyzing and the feeling of joy from what he sees.
Danya, as I call it, though someone may disagree, “trains” Seva a lot. He makes up exercises for him, creates barriers, takes him by the hand and leads somewhere, puts somewhere, tells him what to do and what not to do.
07:49
Mother: Salt it.
Danil: Just a bit? Just a bit?
Mother: Just a bit, yes. Easy, easy, easy. Stop! “Just a bit” ended. “Just a bit” was too big.
08:10
Mother: What? Everything is good with you, isn’t it?
I am not eternal. And I fully realized it while I was ill with covid. And it really hit me.
Grandmother: All this time she hasn’t been living for herself. She has lived for the mothers of those poor children and for those children.
Mother: My goal today is to create a system of accompanied living for my children and, consequently, other children where we live, in our southeast administrative district in Sverdlovsk oblast
