A Mother Learns to Accept Her Son’s Disability | Holding Moses | The New Yorker Documentary

foreign [Music] should cry and start breathing calmly Moses was laboring too hard his belly was pumping to try to get air he could barely cry and he couldn't move and he couldn't open his eyes and I just watch him and I would just wait for him to snap out of it gonna be the day you open your eyes [Music] and he just lied there and he was so still and he was so beautiful I had no idea what I was in for foreign [Music] stomp is a show where people use body percussion and everyday instruments to make music together [Music] one thing I knew when I got into stomp was that I had no idea how the hell I was ever going to perform the show because I couldn't even understand those rhythms that they were doing and I was like when are they going to kick me out foreign and everything we had learned the day before was somehow there was a trust that happened I couldn't see out of my eyes and I couldn't hear out of my ears but I could do the rhythms that were given to me [Applause] [Music] thank you [Music] [Applause] you make such a cute face when you do it though come on one more time just follow me I always knew I won't have kids I just wanted that experience pretty desperately from like an early age yeah and then that again [Applause] yes and then and then just [Applause] my ex had my oldest daughter Tavi ORS I'm just gonna tuck you in and I'll keep checking on you and it went really well and I thought I'm ready to do this the Midwife came over and turkey baster style pushed some sperm into me and I got pregnant the very first time it was a good birth I was so excited and the doctor was so moved I don't know that she had seen a lot of queer families felt like we did it now we have our family foreign [Music] [Music] I'm faster I thought there was one kind of disabled child and that was a Down syndrome child I had no idea the spectrum of disability that exists Moses has a rare genetic disorder called Phelan McDermott syndrome essentially he's missing a chunk of his 20-second chromosome in all of his cells [Music] foreign all of his physical systems his intellectual systems everything is completely compromised the press and then clamp at the end now given that severity he is remarkably present [Music] oh my God and he's connected and he looks at you and he knows you and he recognizes you his disposition is extremely sweet [Music] it's a little kid that likes to be mischievous and get in trouble and play and laugh [Music] it's just a matter of letting go of the child that you always think you're gonna have [Music] some food I felt very much like I lost a child that he had died [Applause] yet I was still there with a child that I didn't understand [Music] [Music] I've never felt so desperate before they needed to go get some more sperm and impregnate me and I needed to do it over it feels like such a heavy heavy burden that I did not know how to hold and I felt inequipped to handle I felt like I was losing my Independence and my ability to be the person that I wanted to be in the world it was uh shocking because in the throes of being given the greatest gift of life which is like birthing a child from your body but instead I was given the hardest thing that I'd ever even given I felt like I lost everything [Music] I wanted him to die [Music] and I wanted him to die quickly [Music] and I didn't want it to hurt foreign [Music] when I was 22 I went to Japan to a farm called body weather this teacher of Bhutto dance named Min Tanaka he would work our asses off all day on the farm and then around five o'clock he would invite us to the stage [Music] farm all day you are tired you are wrong that was the point you don't have your capacities to say no so your willingness your heart your body opens so much more and men would just say over and over stretch farther [Music] really acutely for the first two years I think I cried for hours every day [Music] but that I started to like resource people who also had disabled children [Music] hear about their children and they sounded so cute and sweet they had like lives like they were talking about school the spring break what are we gonna do it's like why are they saying I'm devastated that I have been given this child I don't know how to love my kid and I'm scared you know and they would just look at me and they'd shake their heads and they'd be like we know we know I think time handles the grief for you as you withstand it [Music] then I got together with this one woman who has profoundly disabled son his name was Joaquin foreign her husband came and Joaquin was in a wheelchair and they got him onto the trampoline and he couldn't sit up his dad got on the trip lead with him and then I watched Joaquin just hold his dad's face at his heads and and his dad was accepting that love as enough and I was like oh my God that is like the most beautiful thing I've ever seen okay fly [Music] [Music] Moses hugs like with complete abandon he just pushes his way to the essence of my being it's overwhelming especially when it's coming from a child who appears to be missing so much [Music] [Music] after Moses was born I waited four years to have another child I needed to wait until I didn't feel like I needed to do anything over [Music] all right dance it out dance it out dance it out foreign [Music] my time dancing prepared me perfectly to connect with Moses this kid that I had to learn how to love love so fluidly with such ease wait a minute again he in fact was really my teacher of how to love him because he did it from day one just with his complete and total self [Music] both he hasn't changed at all I'm the one that had to change [Applause] foreign [Applause] [Applause]

Channel: The New Yorker

Views: 35,664

Keywords: disabilities, disability, disability documentary, disabled children, disabled people, disabled person, documentaries, documentary, film, film & animation, film and animation, films, genetic disorders, holding moses, jen rainin, living with a disability, motherhood, new yorker, new yorker documentary, parenting, rivkah beth medow, short doc, short documentaries, short film, short films, the new yorker, the new yorker documentary

Id: SdLLizKayKE

Length: 16min 52sec (1012 seconds)

Published: Wed Nov 16 2022