I’m going to take a moment to look out across this sanctuary and breathe a deep breath. My need to connect with you is purely selfish – I am hoping that I will draw the strength I need to make it through these next few days and next few weeks. And not to start right off with a cliché, but I know Lili would be awed by the outpouring of support and love for her.
There is little to describe the nausea and pain and nightmare that you are forced to live with when you lose a child. These first few days have felt like slamming into a wall where adrenaline and grief collide inside and keep exploding over and over again. The result is an indescribable heartache or something somewhere in the middle of all that.
I know that you are here with us today because you, too, are in shock and needed to connect with us and each other. Thank you so much for coming out and sharing yourselves I know….because I am finding that every day this week since learning of Lili’s death….that being with friends and community is the most important source of strength to carry us through.. There will be time to be alone and face the darkness. Now is the time we need to be together.
Ace mentioned that a little over 2 years ago we stood here in this very sanctuary and watched a miracle unfolding. Lili became a Bat Mitzvah. Many of you were here to celebrate with her and cheer her on. The air in the sanctuary was electric that day – I felt transported out of my seat and I rooted for her – along with everyone else – to do well. She did fabulously well.
It might be enough to stand here today, juxtaposing that event as the final high bar this particular 15 year old kid reached – and why not? What else could we possibly ask of our children after they studied so hard and did so well. So dayenu. That would have been plenty for us, too. But Lili had other ideas. The girl was born with a purpose.
She kept going and striving and never gave up. In fact I’m a little unnerved at the thought that her urgency to cram an entire lifetime into her 15 short years on earth may be to blame for the mess we find ourselves in. That’s of course not the case but just ask anyone sitting here today about the messages she would leave on their answering machines, the way in which she related to adults, asking about their families, their work, curious about whether they, too, have ever experienced injustices or insecurities and how did they respond? She was always searching and learning. Always baring her soul looking for the deepest connection possible. Many of you would probably describe Lili in the same way: she was so grown up and mature for her age. Yikes. How often did I cringe when people would say that to me? But she was definitely a provocative person and no one was left quite the same after being in a relationship with Lili.
I admit to not knowing much about death and the afterlife. After facing some serious medical challenges of my own 12 years ago, all I prayed for was the chance to raise Lili and Abram. I tried not to be superstitious but I feared that if I got too far ahead of myself and thought about the future with too much excitement something bad would happen. Ironically, it turned out not to be about me. Did I have enough time to raise Lili? Of course not, but those extra years were amazing and soulfully, spiritually, psychically and emotionally complete. I have not one regret or wish that I had done anything differently to demonstrate my love and admiration for my daughter. I told her everyday how beautiful she was and I meant it.
I have been frantically searching for some reason that Lili was taken away from us so soon. I am not happy. I do not claim to be brave. I am not rationalizing this. I am in agony. In one of my many darkest moments this past weekend when Ace and I flew off to Iowa to do – we know not what but just felt we needed to jump on a plane and get there to be with her – I thought “is it possible that her work was truly done here in this life and she is needed somewhere else? Was there a tsunami to calm, an earthquake to settle, a disaster of some kind where children and animals needed her more than me?” I hope the journey was easy. I’ve been comforted these past few days that it could have been nothing else. After all, it was Lili and she was a pure, pure soul.
The night she was born, they placed her – like every other newborn baby – on my chest so I could see her and breathe her in. Through that fogginess of just having delivered, I could see there was something not right. Each tiny little hand was fused together like a snow mitten. We later learned this is a classic symptom of Apert syndrome. I remember thinking in a desperate flash that maybe, maybe, if I just rubbed her hands, the skin would fall away and her 10 little fingers would be underneath waiting for me. But nothing could be rubbed away about Lili. She stubbornly came into the world as she was and faced all kinds of odds and humiliations that most people would buckle under. And she persevered. So enough about Lili and her strength. As a young adult she became both daughter and sister, both teacher and guide, companion to me at all times. It was a little scary how close we were. We tooled about town, running errands, just me and “Lil.” Everyone knew her. She could have run for public office and won. An example would be that I would drop her off for her facial appointment on a Saturday morning and I would say to Kirsten, “should I be back in an hour to pick up Lili?” and she would say, “No, make it two Lili and I have a lot to talk about!” I reminded Kirsten that I really just wanted to pay for a one hour facial but that didn’t matter at all. Kirsten looked forward to her appointments with Lili. And, Kirsten, I know you’re here in the Sanctuary with us today. Just like that. It happened all the time. Neighbors, merchants, family friends, business colleagues….whomever spent time with Lili and connected with her were never quite left the same. And many of you came back for more over and over. It’s what kept Lili alive and always looking for the next adventure.
It is impossible to sum up this child’s life of 15 years into 5 minutes so I will not try. But there are some things I would like you to know about us:
We skied together We river rafted together We hiked and climbed small mountains together I dragged her to the gym to work out with me, many times with the bribe that we would go for a manicure or pedicure afterwards We went to museums and went to author events, usually with Lili standing up asking for the hand held microphone so she could ask a question about the book being discussed which she had inevitably just had finished reading. She was especially inspired by biographies of famous current leaders: actors, actresses, elected officials, wives of elected officials. In fact, she was reading the autobiography of Cheri Blair, Prime Minister Tony Blair’s wife, when she died. She read Bill Clinton’s book Giving and was inspired beyond words.
We blasted rock and roll in our car and sang at the top of our lungs. No U2 or Dixie Chicks song escaped our duets.
We went to every Broadway show that played in San Francisco – she did a lot of that in NYC too – almost always with sushi beforehand. She loved our theater nights together.
Lili was a fashionista. I was definitely not! But no matter, she would stop me as I was leaving the house for work or an event, with the astute observation of Coco Chanel, and say “let me see what you’re wearing” or “mommy, you look beautiful in that.” I was always amazed that she found something positive to say because I had literally just thrown my outfit together with whatever I had. She always came up with some way of making me feel special.
She kissed my forehead and smoothed my hair unconsciously while we were watching TV. She loved to be snuggled and cuddled. I had no problem delivering the affection back. My favorite thing was burying myself in the folds of her fleshy neck, kissing her cheeks and hugging her substantial and voluptuous body. We dreamed of the exotic vacations we would take together with her dad. Abram was always in her plans, too, but having a cooler, older brother who had a life of his own raised a small doubt about whether he’d be coming with us. No adventure was too small for her – just so long as we kept moving. Lili was up for anything. And usually so was I. So you can see how I could get used to hanging out with a kid like that.
Her final chapter was by far the bravest. Choosing to leave the comfort and security of her home and her parents, Lili found Scattergood Friends School, a 100-year old Quaker Boarding school in the mid-west. She and I visited last winter, staying for 3 days on campus as their guest. Lili shadowed a student and experienced life in the dorm. She came away with a determination that, should she get accepted, that would be the place for her. She did get accepted, of course, after a thorough and rigorous admissions process that was all earned on her own merit. This is not a school for children with special needs. And because I am so proud and protective of Lili I always managed to squeeze that fact into my conversations. Lili was cruising through life now, having achieved everything Ace and I could hope for her: she was at grade level to enter high school all on her own with the help of her teacher and mentor, Kathy Franks.
Scattergood Friends School was perfect for Lili but of course she was homesick. We spoke almost every day and I loved seeing her name and phone number light up my blackberry! Her dad used to take photos of everything and anything to email to Lili: we could be driving home across the GG Bridge during commute hours and the city skyline looked particularly beautiful that night. He would snap the picture and email it to her with a funny comment. The photo could be of me gabbing on the phone as I drove home from work – with an earpiece on of course – or it could be of one of our dogs. Lili loved getting those photos. She only once told us at the very beginning that she “didn’t think she could make it at school” because she missed us so much and wasn’t sure she was being accepted by the other students. We knew differently- we were talking with the school all the time and in fact, her best friend Sabrina is here with us today from Scattergood. We are blessed to have this new and lasting friendship in our lives.
Lili was doing great at school. She was passing her classes, testing her limits with adults and teachers, sharing clothes with the other girls, doing her chores and starting to settle into her skin. You can imagine our mantra to Lili who fretted over the fact that not everyone instantly took to her: it takes time. It takes time. It takes time.
By the time Lili passed away this past Saturday, there was ample evidence that she had finally found the one thing that had eluded her these past few years – the one thing Ace and I and Abram could not provide for her – and that was a community of friends her own age who truly liked her for who she was and wanted to hang out with her during and after school hours. Those who discovered in her the grace, love, humor and intelligence that many of us had recognized all along.
One of her teachers met Ace and I at the airport in Iowa the other morning to hold each other in the early hours of this awful experience. She told us that Scattergood has recently underwent a strategic planning process where the faculty was asked to develop their school philosophy of teaching and raising children in only 6 words. What a challenge that must have been. But they ended up with their final mission statement which I think is brilliant: You are fine, now go learn. We were told that Lili had just reached the comma – she was fine – and she was just teetering on the verge of really starting to believe in herself and her own uniqueness. Lili could now go learn with out the distractions and plaguing questions about whether she fit in.
She died in her sleep. I believe she went to bed okay that night, both physically and emotionally. Her last message to me on Friday evening 9 pm our time, 11 pm Iowa time was her typical sweet “Hi mommy…..I know you’re at the movies, I’m going to bed soon, but let’s talk first thing in the morning. I love you.” She didn’t complain of a headache, stomach ache or anything else odd. I’m relieved about that. But I will always wonder if there was a clue of any kind. It’s unfathomable and cruel to have a healthy child go to bed and simply never wake up.
So now I must find the strength and courage to face this world without Lili and were it not for Ace and Abram, I would want to lay down and just go to sleep, too. It’s ironic, but my fear of being stricken again with cancer and leaving Lili too soon in life was never realized. Once again, Lili took the courageous road and went first….almost because she knew that I worried about her all the time deep down into my bones.
She was my angel. And now she’s everyone else’s too.
Thank you again for helping our family through this.