Six Degrees of Separation

This weekend is the American Society of Cinematographers (ASC) Awards, where the ASC honors it’s own for their amazing ability to photography images. Several of the nominees are also friends of mine, people who I have gotten to know over the years working with them. Their images have made memorable impressions on anyone who has ever watched a movie, or a television show, or a commercial, and laughed or cried. They have the ability to make us feel what the storyteller is trying to tell.

Seven years ago, I was pregnant with my first child, working for a great company, and enjoying life. My husband and I lived in a beautiful little Spanish house in Hollywood Hills. One day, I came home from work and there was a letter in the mail. A letter telling me that I had been accepted as an associate member of the ASC. I was so excited. This was something I had always wanted, but never thought would happen. At last, I would be a part of this elite organization of artists. I shouted out to my husband, “I got accepted as an associate member of the ASC, can you believe it?” He looked at me and said, “Wow, you seem more excited about this than about being pregnant.” Without thinking I said, “But this is a lifetime membership, a lifetime commitment.” He looked at me funny and said, “So is having a child.” Hmmm…

As time went on, we had our child, Owen, and found out he had Down syndrome. To this day, I will never forget the support and love that I got from members of the ASC. As I began to deal with the diagnosis, I worked on hosting the first fundraiser for Down syndrome research (www.dsrtf.org). And guess who offered me the space to host it? The ASC (www.theasc.com). Their clubhouse, located in the heart of Hollywood, was the perfect venue for our fundraiser. The membership opened their arms to my cause. I remember Billy Fraker, ASC, five-time Oscar nominee (“Murphy’s Romance,” “War Games” and “Rosemary’s Baby” to name a few) always asking me how my son was doing after he was born. He never forgot to ask. And he generously supported our fundraiser. Then there is Owen Roizman, ASC (“Tootsie,” “The Exorcist,” “French Connection,” among others) a legendary cinematographer (our son was named after him), who never forgets to call me “mommy” and ask about his namesake. They all supported me in what was probably my darkest time.

As I get ready for the festivities tonight and tomorrow night, I think about how much crossover there is in my life. So many “degrees of separation.” And these relationships have been forged through my work, through the years of spending time with some of the greatest cinematographers. A few weeks ago, I ran into Ken Zunder, ASC, who shot “Judging Amy,” one of my favorite shows. (I breastfed my son with Down syndrome many nights watching reruns of “Judging Amy”). My husband and I visited the set years ago. Then, surprisingly, I saw Amy Brenneman (who played Amy) at a fundraiser for Chime Institute, which is a school for kids with disabilities. Her daughter attends the school. She wrote this amazing essay that captured it all completely about dealing with a child with a disability. When I saw Ken, he put me in touch with her assistant, who was able to ask Amy if she would share her essay. And her assistant, who has a niece with Down syndrome, was able to share it with me. So, tomorrow I will post Amy’s essay.

Kiss and Make Up

After the emotional drama of the other night, I got up the next morning not knowing what to expect. Tess had crept into our bed in the middle of the night, and when I woke up, she looked at me with one eye, not sure what my mood was. It's amazing how intuitive she is for a just-turned-four-year-old. I smiled and kissed her and she smiled back.

Going into Owen's room, I gently patted his back, "Come on, buddy, it's time to get up." He pulled the covers over his head. "I don't want to go to school," he said. Now, this is a kid who asks every night if he is going to school again tomorrow, he loves it that much. Not so today. That was when I knew that he totally understood what happened last night. The memory of it all had probably seeped into his dreams and woven itself around the lingering edges of sleep. I tried again. "Come on, Owen, it's school today. You get to ride the bus." He reluctantly pulled the covers back. I got him up and he got dressed. Tess came slowly down the hallway to his room. "Kiss and make up, you two," I said, and held my breath. Owen would not look at Tess, his eyes remained cast down. Tess went over to Owen, knelt down and said, "Good morning, Owen. Can I have a hug?" Owen raised his face and the hint of a smile was there. Then he opened his arms and they both fell the floor, hugging for a long time. Slowly I breathed out. The crisis was over.

That day, when I came home from work, I noticed something different. Tess was very attentive to Owen, and Owen was so happy to bask in the glow of her attention. She asked him to play a game, then showed him how she wanted to play it. They followed each other around, more so than I usual. I was so proud of Tess for taking the lead this time. This was her way of making it up to Owen. And Owen was happy.

I know I can't keep the hurt away from my children, and I know this is how they will learn, and grow. Sometimes it is the pain that teaches us the lesson and the healing that allows us to go on. I am not so afraid for Owen anymore, because I know that he will adjust. And he understands, that is what hit me the most. So often, people want to label kids with Down syndrome as slow, or retarded, and they are not. We dismiss their ability to embrace a wide range of emotions, not just happiness. How many times have I heard that "they are such happy kids"? I took something away from that experience. I learned that my son will experience as much of life as everyone else. He won't be president, or a rocket scientist, or cure cancer, but he will have a good life. And, as Henry David Thoreau said, "If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away."

Such Sweet Sorrow

Tonight, my heart hurt for my son, Owen. I didn't know how to make it better. For once, I hope having Down syndrome erases his memory of the pain tonight.

Here's what happened: he and Tess were playing and I told them we could play a game and see who could get their pajamas on faster. Of course, they thought this was the most fun thing, and they both started trying to get their clothes off and their pjs on. I figured it was going to be about even. I had to help both of them a little, and they were going at the same rate, until Owen just powered through putting his pants on (he even pushed my hands away when I tried to help turn them around) and he won, sitting down with this big smile on his face. Tess looked at him and said, "Owen won" and I congratulated him. He was so proud of himself. Until Tess started crying. "I wanted to win, I wanted to win," my 4-year-old said, while the smile on Owen's face disappeared. He looked down, then at Tess, then stood up and walked upstairs to go to bed. Meanwhile, her sobs got louder. I told Owen he had to go to the bathroom and put him on the toilet. He was silent, and sad. I could tell he sad, and bewildered, because he did what he thought he was supposed to, play the game to win. But she was crying so loudly at this point and there was nothing I could say or do. I felt horrible for Owen, and I was so angry at Tess.

I went downstairs to tell Tess to stop crying and when I came back upstairs, Owen was re-doing his pajamas, muttering "Tess can do it. See? I slower." He gets it. He knows he hurt her and that's all he cares about. My anger at Tess was palpable, but I decided getting Owen to bed would be the best thing. We brushed his teeth and he ran into his bed and pulled the covers over his head. He wouldn't even say goodnight to me, and I tried to give him a hug but he got out of bed and pushed me towards the door. "Go," he said. I went into Tess's room, so angry, but not sure what to do about it all. So I stonily watched as she brushed her teeth. She knew I was angry and went right into her bed, still crying a little. I always tell her a story, so I asked if she wanted on. "Yes," she said. So I started to tell her about a little girl named Tess who hurt her brother and how much he adored her. She still continued to cry a little and said, "But mommy, I wanted to win." I tried to explain that she can't always win but it wasn't getting through. Then, I heard Owen. He got up, came into Tess's room and gave me a hug, wordlessly. Without even glancing at Tess, he went back into his room and went to bed. My heart lurched. He was saying, "It's okay, mom, I love you, but I'm still hurt." So I asked Tess to look at me and tried to explain that Owen wasn't as smart as she was, and that his brain didn't work the same way and she had hurt him really bad. She still wouldn't budge. So I said goodnight and walked away. As I left the room, I heard her turn and say "goodnight Mommy" in this frighteningly small voice. Two kids who love each other so much but don't know how to cross that bridge to forgiveness. Owen adores Tess. It's clear. And Tess loves Owen, but she is smarter than him, and faster, and the leader, and can't understand why he won this time.

It makes me wonder: does Owen know so much more than us? How is it that all he wanted was for Tess to win so that she could be happy. He didn't care that he won, he would give it all back to make her happy. Isn't that what true love for one another is? Isn't that true unselfishness? To think that my son possesses something so rare, so wonderful. That is what children with Down syndrome are all about. That is why we need to treat them with respect, and care, and kindness.

Growing Up So Fast

Owen is 6-1/2, going on 13. At least, that's how I feel. Is it normal that he is already acting like a teenager? In the morning, when it's time to get up for school, he rolls over and covers his head with his blanket. In the evening, he has been going into the toy room and slamming the door shut so he can watch his show by himself, in the dark. I love that he is acting like a normal kid, it secretly makes me happy. But it's sad, too. I see the seasons change so fast with my kids. I see how it was almost like no time has passed and suddenly they are older, and talking, and thinking, with their own personalities starting to flesh out. Owen is already up to my shoulders, and he is only six (most people with Down syndrome are shorter people, although it helps that my husband is almost seven feet tall). Tess is already expressing her views to me, trying out phrases like "that's so weird" and now locking the door to her room when she says "no boys allowed." How did it happen? How did Erik and I go from two people who fell in love and got married, to a couple with a new baby who was diagnosed with Down syndrome, to this world of a beautiful, growing, healthy family that is ours, all ours? How did we navigate those roads with each other and come out better for it? Because our family has made us better people. Owen's diagnosis has given us an innate strength we didn't know we had, an ability to relate and draw people in, and a vision of a life well-lived with no regrets.

The other day, I was coming back from the store with Tess and Owen and I asked Owen if he was cold. "No mom, I'm not cold. I'm fine," he said, and I smiled at the length of his sentences, the use of grammar, the ability to communicate. Oh, and did I mention he's only six? In comparison, Tess can talk up a storm and express herself, and even Axel (who hasn't turned two yet) can put sentences together and ask the who, what, where and why questions. But, for Owen, it is a gift. It will make all the difference in his world if he can communicate and people can understand him.

I am so lucky to have my three kids.

Second Time Around

I finally took the plunge again and created another blog...it's amazing when you let something lapse, then it becomes obsolete. My first blog, "I Thought I Was Driving," was all about my first-born child, Owen, who was born with Down syndrome. He is everything I never thought he would be: funny, smart, cute, happy, sad and thoughtful. "I'm so proud of you, Mom," he said the other day, out of the blue, after I had just finished working out. He always knows what I need to hear at the right time.

So much time has passed since that first blog, and I find I miss the opportunity to write about my thoughts. So, here I go again!

And, One Extra Reason to Live...Love...Hope is the name of the fundraiser that I host for Down Syndrome Research and Treatment Foundation. We will be hosting our fifth annual charity event this year, and as of yet, I have no idea what it will be like. And I'm the chairperson!