FOR LOVE OF JULIAN

"FOR LOVE OF JULIAN"
by Julie Mars
(reprinted with additional photos from Times Herald Record)

Meira Blaustein and Laurent Rejto met in 1982 at The School of Visual Arts in New York City. They were married after graduation and soon formed a film partnership to produce documentaries. The first, Reaching Out With Theatre, focused on the homeless and introduced viewers to these disenfranchised members of society. Their latest film examines the world of multiply handicapped children. What Meira Blaustein and Laurent Rejto never expected was that the film’s primary subject would be their first born son.

 It was 1989 and they had just moved from New York City to Orange County and renovated a two hundred year old farmhouse. The nursery was decorated and ready and they eagerly anticipated the birth. They had waited a long time to start a family.

Five weeks before the due date, Meira noticed with concern that the baby had stopped  moving. She called her doctor, who advised her to go to the hospital. "At first, in Newburgh, everyone was acting as if this wasn’t serious, saying things like, ‘Well, you’re going to have the baby early, that’s all. You better come up with a name.’ She was tested and, after a 7-hour wait, sent by ambulance to Albany Medical Center. There, Meira remembers, "there was this incredible sense of emergency. As soon as I got off the elevator, everyone was crowding over me and asking what took so long. They monitored me and there was no movement and the baby’s heart rate was very low. They took Julian out in an emergency C-section.  He was almost dead. They performed serious heroic measures to save him."
 
 Thus begins a long and painful eight and a half-year odyssey for Julian Pelle Blaustein-Rejto and his parents. Their initial shock, their deep sadness, their serious struggles (both personal and medical), and, of course, their unconditional love, are the subjects of  "For Love of Julian" which the couple began six years ago when their son was two years old.  "This is our gift to Julian," says Meira. "I can’t make him walk, I can’t make him talk, I can’t make him eat, but hopefully, in some way, this film will help give meaning to all the suffering he has been through."

Laurent had followed the ambulance to Albany. From the time he entered the hospital, he states, "Nobody told me anything.  There was so much confusion and this sense that something really horrible was happening, but I didn’t know what until they wheeled Meira out of the emergency room. I could see death mirrored in her face. And then the doctors surrounded me and asked me if they could proceed on my newborn child with new, experimental drugs so they could save his life. I couldn't grasp any of it. I was in a daze. For the next two weeks, we wept constantly. As things cleared up, they got worse."

On the third day, the doctors informed the new parents  that a CAT-Scan of Julian had revealed massive brain damage. "I remember this very clearly," Meira states. "I remember they asked me to sit down, and I said, ‘I don’t want to sit down. Just tell me.’ They said that most of Julian’s brain cells were dead. They called it a Swiss-cheese brain. And then I sat down. And I asked what it meant, and they said he was going to be a vegetable and that we should put him in an institution right away. Laurent was not there at the time. He had gone to the house to get some clothes, and I thought, My God, how am I going to tell him. How am I ever going to do this."

What happened to Julian is one of life’s cruel mysteries. It’s presumed that one of the blood vessels in the placenta went haywire and that Julian stopped receiving blood and oxygen. From that point on, the brain cells throughout his cortex started dying very quickly.

"As soon as I could get out of bed, I went to see him," Meira recalls. "The staff encouraged the bonding, but at the same time they were telling us to place him in an institution. Maybe before you see your baby you can do that, but once you see him--he’s your baby. You can’t just do that."

"I remember", adds Laurent, "how one nurse pulled us aside and told us to prepare to bury our child. I remember how I wanted to go home and build a coffin, but I also remember how incredibly beautiful Julian was and how we hoped against hope that he would conquer his disabilities. We gave him the middle name of Pelle partly because of the movie ‘Pelle The Conqueror’."
 
Blaustein and Rejto brought their son home to Pine Bush, New York. At the hospital, Julian had been tube-fed through the nose, but  "when we got him home, we realized he really couldn’t eat. He had no sucking reflex. We tried to feed him, and for six months, it was torture for him. He screamed non-stop, a high-pitched scream that the doctors said is characteristic of children with brain damage. For hours, we would try to feed him--we tried every different method, every position, every trick we could come up with." Blaustein also called the hospital, but received no help. "Weeks later, somebody returned my call and told us to put him on Valium and seizure medication. They said maybe that would help." "Julian was in horrible physical pain," adds Rejto. "He threw up everything he ate."  The floor in their home is still stained from Julian’s continuous vomiting.

  Since Julian needed round-the-clock care, Blaustein and Rejto went on back-to-back  twelve-hour shifts. They kept a log of feeding strategies, entering information on what seemed to work and what didn’t. Rejto, an award-winning documentary film editor putting in "36 hour days", quit his job and  learned woodworking so he could be at home with his son. It was an absolute necessity. He also stopped writing, which had been his passion.

"We got by one day at a time. The only support we had was from our parents. Other than that, there was none. All of our friends vanished," says Rejto. "Our neighbors, who used to stop by, started waving as they drove their cars past our property. We all became disenfranchised overnight. With time, we found some agencies that were willing to help Julian and we became acquainted with a few new friends; people who accepted Julian for who he was. It helped bring us back into the world."
 
 When Julian was about six months old, Meira got pregnant again. "It was the healthiest thing I could think of, she says. "I wanted to look to the future--to the light at the end of the tunnel. I was very nervous during that pregnancy. Nobody could promise that things would be O.K. because nobody knew why what happened to Julian had happened. Nobody could say it wouldn’t happen again. We were nervous--big time. And then Daniel was born and, knock wood, he was very healthy."

  "Daniel’s birth was a turning point", Rejto remembers. "First of all, it was the happiest day Meira and I had ever experienced together. We sobbed, but from joy. But then, as Daniel graduated through the ‘normal’ stages of childhood, we realized how badly injured Julian really was. I would look at Daniel crawling and smiling on one side of the room and then I would look at Julian sitting still in his therapeutic chair. The contrast was shocking." Blaustein and Rejto also have a third son, Adam, now 2.
 
 For the first two years of Julian’s life, Blaustein "was home all the time with him. I had no relief and no perspective. But then I took a trip home to Israel by myself for a precious eight days and being away, I got perspective. " That was when she decided to make the documentary about her son’s life. With Laurent, she wrote a proposal, then tried to re-acquaint herself with their past contacts in the film industry. But, "everyone had disappeared," Meira remembers. "They had all left New York for Los Angeles. One day, I mentioned I was trying to make a film to the ‘herb-lady’ in town and she told me about a local film producer," Denise Kasell of Sloane/Kasell Productions, who had just finished an afterschool special starring Carole King. The "herb-lady" mentioned Meira to Kasell and they met. "She was so eager to help and her extensive background in documentary production was all I could ask for", recalls Meira. "In a heartbeat and out of total kindness, she put together an all volunteer crew and production began."

Perhaps one of the most amazing aspects of  "For Love of Julian" is that, so far, the entire film has been produced and created entirely through donations. Equipment, technical expertise, an editing room, film--everything has been provided free by film industry professionals who are as determined as Meira and Laurent are to see this film completed. To date, the cost of the documentary exceeds  $50,000 but, "The only things we have paid for are food for the crew and phone calls," comments Blaustein.  "However, the very expensive part is coming now. Our free deal at the production house has ended and we need to pay for editing time." Rejto adds that, "the reactions to the rough cut have been very positive. We’re getting lots of encouragement, but unfortunately, at this stage of the game, we’re handcuffed without  financial means."

 "For Love of Julian" aims, in part, "to dispel the fears and mysteries surrounding multiply handicapped children."  "I think people don’t know how to deal with handicapped children, especially multiply-handicapped children. They don’t know what to say or what to do. So they prefer to look the other way and not do anything. It’s not right and it’s not good and it should be changed because this could happen to you and you would want people to help you."
 
The 60-minute film, which features both a visual documentation of the children’s lives and candid interviews with parents, teachers, and health professionals,  will be made available to television, educational libraries, and special interest groups dealing with the handicapped. They hope to bring their message to as wide an audience as possible. Last year, a five minute promotional piece was presented at the Hudson Valley Film Festival. "People were crying," says Blaustein. "They didn’t expect it, and they were unbelievably touched and moved. They came up to me and said they felt so much for our little boy."
 
Some final segments were recently filmed at the Sullivan Diagnostic Treatment Center, a residential home program for 82 children,  where Julian has lived for the past four years. "For what it is, it’s the most wonderful place in the world," raves Blaustein. There’s an organic farm, animals to pet, a high-tech learning center, a caring professional staff, and a state of the art treatment program. But choosing to place him there when he was four and a half years old was a hugely difficult decision for both Rejto and Blaustein.

 "About six months before we found SDTC, The Discovery Center, I had just run out. I just wasn’t able to do what he needed anymore. You have to give Julian so much attention, because if he isn’t getting it, he’s just fading away.  And we had Daniel, who really needed a normal life. We couldn’t go anywhere or do anything. We desperately needed to normalize our lives." Finding the right place relieved some of the burden. "It’s like an extended family," says Rejto. "I think about Julian all the time. Sometimes I feel guilty that I’m selfish, but after almost five years, I just couldn’t do it anymore. It’s important for me that I know he’s surrounded by people who have the patience to help him all the time, to repeat something for three hours if they have to." Rejto and Blaustein and the children visit Julian frequently and sometimes, when he’s healthy enough, they bring him home.

 Joanne Gorr, the director of the Berman House where Julian lives at S.D.T.C.,  says that the center is "a very innovative place. During the week, we are so busy. Children from the day care, the pre-school, and the school program are on the paths, doing jobs, participating in an outdoor education setting. The animals are taken care of as part of the children’s school program. We have a learning center with swimming, a music center, a kitchen area."

 Families are welcome at all times. "Family involvement is very important and very encouraged here," states Gorr. "The children need it. They do well if their families are involved. And for siblings, the campus is nice and accessible, particularly compared to hospital settings. Being able to come here and walk around and use the playground and the pool really helps them form and keep relationships."

 Laurent Rejto and Meira Blaustein still don’t know if Julian recognizes them when they visit or is even aware that they are there. He cannot reach for a toy or laugh or speak. But "he gives us a lot of happiness," says Blaustein. "He can teach you a lesson when you least expect it. He can teach you about the meaning of life."

 Rejto adds that, "Julian and so many of the children he lives with have pain etched in their bodies and their faces but they also have indomitable spirits and the souls of angels. If you look deep into Julian’s eyes,  you’ll come away with kindness and love." Perhaps this is because Julian’s middle name, Pelle, is also the Hebrew word for "magic."

OVERCOMING IGNORANCE TO TELL HER SON'S STORY
written by Syd M.
reprinted from Woodstock Times - 11/5/98

Meira Blaustein had no way of knowing that in the final weeks of her otherwise normal pregnancy, a one in a million defect, an unpredictable complication, would rob her first child, and his parents, of any chance at a normal life. It happened silently and without warning, depriving Blaustein's unborn son of oxygen and nourishment. Julian was born barely alive, with severe brain damage and multiple handicaps.

 That was nine years ago, and today, Blaustein says, Julian isn't much different than he was at birth. "He's grown, he's very handsome, he's big," Blaustein says. "But he still can't do the things he couldn't do as a baby. Developmentally he hasn't grown much even though his level of awareness has increased." Julian is wheelchair-bound, incapable of even the simplest tasks like walking and talking, eating, and playing with a toy.

 On Sunday, November 8 at Upstate Films, Blaustein, a filmmaker, will premiere *For Love of Julian*, a documentary inspired by, and featuring, her son Julian. A personal documentary, *For Love of Julian* focuses on Julian's struggles, as well as the difficulties faced by other multiply handicapped children and their families.

 Although they were advised to place Julian in an institution, Blaustein and her husband, filmmaker Laurent Rejto, determined to give their fragile, damaged son the best possible life, took him home to Pine Bush, where the couple has lived since shortly before Julian's birth. Years of struggle and isolation followed, as the new parents devoted themselves to caring for Julian.

 "Living with Julian, taking care of him, raising him when he was going through such a horrible time and everything was so intense and difficult... really just brought me into this extreme passion and need to do something about it, to tell his story and document it," Blaustein recalls. When Julian was two, Blaustein began writing *For Love of Julian*, driven by a need to tell his story to a world largely oblivious to the struggles of the multiply handicapped. It would be another seven years before *For Love of Julian* was finally finished.

 "Caring for Julian was very frustrating because there was really not that much that I could do for him," Blaustein explains. "I could not make him walk, I could not make him talk, I could not even make him eat, I could not make him learn to play. I could do very little for him, and as a mother you want to do a lot for your child."

 Blaustein, who also has two healthy sons, still feels the pain of isolation that followed Julian's birth. "People were by and large very uncomfortable with him, and therefore very uncomfortable with us, and it was very frustrating and upsetting," she says. "Really it's a matter of ignorance. They don't know what to do with him, and instead of dealing with it and asking questions, people choose to ignore it. And this is really the worst thing you can do. It hurts everyone. It hurts Julian, it hurts us."

 Blaustein confesses that before Julian's birth, she was as ignorant as anyone else about handicapped people. "You don't know what to say. You don't know if you're supposed to say anything. Once I had Julian, I came across a lot of other kids -- all of a sudden, you get to know them as children, and not necessarily children with disabilities. You want to talk to them, you want to hug them, you want to make them happy just like you do with other kids."

 Educating the public about children like Julian was one of Blaustein's major motivations in making *For Love of Julian*. But it was also important to her to make the film as a gift to her son, even though Julian will never be able to understand it. Because Julian's health is so fragile, Blaustein felt more than the usual sense of urgency about finishing her movie. "I was very driven to finish it. It became a matter of life and death for me because there was a time when Julian became very very sick and for me it was extremely important to finish the movie while he was still here, so he could see it," Blaustein says. "He was so sick
that I actually feared that he was going to pass away... I always thought that I never would have forgiven myself if I didn't finish the movie."

 Finding professional help for Julian, at Sullivan Diagnostic and Treatment Center, the "Wonderful, wonderful residential school" where Julian has lived for the past four years, helped Blaustein realize her dream. In addition to easing the strain on Blaustein's family, finding SDTC changed the tone of the movie by showing her "how people care for these children in a way that is very meaningful and hopeful and creative. The movie is ending up in a very hopeful and positive note. If the case was different, if we hadn't placed him, I'm sure that the movie would have been very very different," Blaustein explains.

 Placing Julian at SDTC wasn't the only thing that brightened Blaustein's outlook -- making the movie itself also had a postive effect, particularly because the crew of film professionals who helped her make *For Love of Julian* over the course of several years, including producer Denise Kasell and director of photography Rob Sanderson, all volunteered their time and resources. "Each and every one of them is an amazing human being. They just did it because they thought it was valuable and they wanted to do it," Blaustein gushes. "The whole process of making this movie brought me together with so many wonderful, giving people, and it was for me a very positive experience. It sort of renews your faith in the human race."

 Making *For Love of Julian* also altered Blaustein's view of her son. "I saw Julian more and more as someone who has a very positive influence on people. Even though it hurts me so much that he's the way he is, and he's suffering and he's as handicapped as he is, I can see the positive effect that he's had on everyone who was involved in the movie," says Blaustein.
"People have told me that meeting Julian has changed their lives, and that's incredibly wonderful."

 Julian has improved at SDTC, and his level of awareness has increased since he moved into the home, according to Blaustein. "It's easier to get him to smile or to engage him. He's quite happy usually." Tiny changes like that can be huge for a child like Julian, who will probably remain stuck at a developmental age of three months. While most parents have lofty dreams for their children's futures, Blaustein's hopes for Julian must be modest, tempered by her son's physical and mental limitations. "I just hope that he will be happy and healthy. That's the best that I can hope for," she says.

 Blaustein's hopes for her movie are also modest. Severely handicapped children and their families live and struggle in isolation, Blaustein says, and through her movie, she hopes to open a window onto their world, and Julian's. "I wanted to talk for him. I wanted people to know about him. Such struggles and such difficulties should not go unnoticed," Blaustein says. As a mother, Blaustein views her documentary as a gift to her son; as a filmmaker, she hopes to give the gift of understanding to the rest of the world, "so they would know children like him exist and they need attention and care and love."

Syd M

For Love of Julian - Synopsis - Reviews -  News Articles
Window Pain  - Filmmakers - Related Links - Ordering info
Home - E-mail

Copyright © 1999-2002 Farmhouse Films