DYLAN DAVID: MAY 26, 2002 - MAY 22, 2013
Memorials from Dylan's death onward are below, and all my old updates from Dylan's life are under the Archives tab. This page and all archives read backwards from top to bottom (so people didn't have to scroll for "the latest".)
Many thanks to those who have donated to the organizations to the right in Dylan's memory.
The latest (June 17, 2013, 6 a.m.): This will be my last post on this site.
Just as Jana doesn't have to drive out to the hospital and care for Dylan all day long; and just as Dylan doesn't have to get shots and sit in boring waiting rooms; and just as Chandler doesn't have to be the kid who has a sick brother anymore; I no longer have to be the weekly reporter of how we are doing each week. Add to that: we each have our own online methods for sharing now and, other than Chandler's shows or any other major developments, most our lives don't need to be broadcast anymore. This site will stand as a memorial and our lives will go on, but all stories come to an end. Connect with me on my Facebook, if we aren't already (or with Jana or Chandler, who has his own website) to be updated of anything important, or subscribe to my YouTube Channel for updates on video uploads.
I know some of you will miss my updates, but there are a few good reasons for me not to keep writing them:
First, I will be focusing my energy on writing a book about Dylan's life; it may take months or years, but that will be the focus of my writing. Keeping up the blog will sap my creative energies for that project, so that's another good reason to stop. I reached thousands of people with Dylan's story with my own meager means, but with a book or film, could potentially reach hundreds of thousands or more.
Secondly, I plan to make a long-form music video or personal documentary about Dylan, more and better than what I was able to throw together for the memorial service (I was up almost three days straight putting together the slideshow of photos, the video montage, and writing my eulogy. I'm surprised I didn't fall asleep while I was giving my talk!) By the way, for those of you who could not attend Dylan's Celebration of Life, or just wish to watch portions of it again, you may view the memorial service in its entirety, along with chapter headings, just like a DVD, at this youtube link.
And third, I will not be updating my Facebook much any more, either. It's another time and creative energy suck, and for me it is painful to see life moving on without Dylan, other kids growing up, other families going through cancer diagnoses, treatments and bereavements -- better to take all this in smaller doses. Dylan's story is here for all people who want to, to read/see/watch as much as they want, for as long as this site stays online. For example, yesterday, Father's Day, was really hard to see all the fathers with their kids, whole and healthy. It was a hard day already, without the little guy's beautiful smile and bear hug, although Chandler and Jana both cheered me up with hugs, a hand-made card and lunch out at The Counter after church, where I thanked our congregation for their unflagging support for these last six years. Then Chandler had rehearsal and a friend treated him to go see the musical "The Scottsboro Boys" last night. I asked for some alone time in the afternoon, reliving memories of all kinds and feeling many emotions, and having a good cry for an hour or so. We had some friends over for wine and conversation last night as a welcome distraction. Chandler's next play is, "Alice in Wonderland," and it shows weekends in July, but he does not have another show at the theater until at least September. You may buy tickets for "Alice" here:
I just want to thank all those who volunteered their time and talents at Dylan's memorial service, and those who traveled far to attend it. Some people have told us they have "Remember Just To Love" posted in their homes, one friend wrote a song with that title, and one friend even named her newborn son after Dylan, and can't wait to tell him about our boy's story. And thanks to those who have sent condolence cards, or donated to our causes (listed to the right), or planted trees in Dylan's memory (one in town, one in Israel), or made photo albums of their own memories to give us, or made many other small acts of memorializing his brief but blazing flame of a life, snuffed out too soon, but which gave a lovely glow while it shone. I want to thank my boss, Rob, and Tubular Labs, for supporting us when our situation was at its most dire, and giving me good work to do along the lines of my experience in the digital realm, and especially providing medical benefits as we saw Dylan through to his end.
Jana and I have been opening two "memory of cards" from Dylan's service every day, because there are so many -- we will have enough for about it year, it seems. Dylan's remains were cremated Thursday, and we are still trying to decide what to do with them. We are connecting with local grief counseling groups for families that have lost children, and that will have an age-appropriate group for Chandler, if he wants to participate. The WeCan group we have worked with also has a bereavement group, for those who have lost their children to brain tumors. Life goes on as we try to find our "new normal."
The first blog that I ever wrote about any topic was in April of 2007, on my Myspace (I had just started working for Myspace/Fox/Newscorp) and, back then the site was used mostly by teens and bands. Ironically, I was skeptical about how much social networking I would really need, being a chubby, balding, middle-aged, married father -- not their typical demographic -- but then Dylan got sick, and I saw social networking's potential to help him, to help our family, and to help others. My blog also helped me therapeutically; it helped inspire thousands to live more fully; it helped keep Dylan alive and our family financially afloat through every triumph and every setback; most importantly, it helped us all remember just to love: our children, our families, our friends, even complete strangers. When Dylan made me promise me to tell everyone his message, "Remember just to love," he didn't say who, he didn't say how, he just said to do it.
We will, Dylan. We will try hard, because you showed us how to try harder than anyone, whatever the activity . We will smile and hug and call things "awesome." We will play and sing and laugh and dance. We will always be grateful for you: for your strength, your life, your spirit, and how you changed the world for the better in the short time you had on this planet. We will remember funny and poignant moments we made together, we will miss you so much it hurts, and we will think of you every day for the rest of our own lives. We love you, Dylan; and we always will. Goodbye. Farewell. Amen.
The latest (June 10, 5 a.m.): For those who could not attend the memorial service, my dad scanned in the bulletin from Dylan's memorial service so you may view it here, (link also at bottom of this page). Once I get the video of the service later this week, I'll also be posting portions of it on my YouTube Channel channel (so please subscribe to be notified of uploads). I posted text versions of two of the tributes from the service in my update below this one.
Friday was hard for me, because so many people were posting pictures on Facebook of their children graduating. If Dylan had never had cancer, he would have graduated the 5th grade at his old school on Friday. The teachers and kids at his new school that did get to graduate wore gray ribbons in his honor at their culmination ceremony. Jana and I had a date night Saturday, our first non-anniversary dinner in years (Chandler was at yet another mitzvah). Last night, Jana and I watched the Tonys at a friend's house, while Chandler and most of his friends from the Morgan-Wixson Theatre were at an awards ceremony from the National Youth Arts organization. Chandler earned an award as part of the ensemble in Once Upon a Mattress," and others were given awards for individual performances. Here is the full list of Los Angeles area award winners:
A friend went with Jana to the beach earlier on the week, just to walk and talk; the water was still, and there was no breeze; and suddenly there were scores of dolphins jumping joyously for a solid hour. Dylan LOVED pointing out dolphins any time we were at the ocean. It was a true gift from the sea for mom. The name "Dylan," you may recall, means something like "son of the sea" in Welsh, and dolphins have many Dylanesque characteristics: strong, smart, social, smiley, spiritual ... and free.
Jana told me that Dylan used to hug her often and tell her, "Thank you for saving my life." I am recording many of these memories of hers for a book I plan to write -- she had so much time with Dylan when I couldn't be there for various reasons. Once they were hanging out and Jana said she loved how much fun she has with Dylan and how cool he is to play with and he replied, "Would you mind telling my friends that?" (He loved playdates more than anything. But, because of his limitations, baldness, bloatedness, or fear of illness or death, many of his friends, except for a couple of true faithful friends, had stopped asking to see him, or their moms stopped calling back. He ended up being very lonely, and we think that despair may have been a psychosomatic contribution to his death. Conjecture, of course, but not too far-fetched.)
Jana and I have been going through Dylan's clothes, toys, stuffed animals, and books to decide what to keep and what to donate to charity or give to friends. It is very hard, but necessary, especially to give Chandler more space for his own things in his room, and let him set up a place to record his music. He is involved in three productions this summer in various camps from now until early August. I have slowly gotten back to work at Tubular (so grateful for the flexibility and compassion), and Jana is planning to start personal training again soon.
We are all reacting differently to the grieving process. I cry every morning, before anyone else is up; as I have done off and on for years, but now with a vengeance. I don't know how I'm going to make it through Father's Day. Jana is solid and steady, feeling Dylan's presence spiritually in her heart, resilient as always; while Chandler just wants to move on (his words). I get that; all of it: a lot has ended for him: a great school year, one of his favorite musicals, and his brother's life. It's hard enough being a teenager these days. We are talking to friends about grief groups or counseling, but were recommended to wait a few months for him to start. Jana's been working through her issues with a therapist for years, too.
Last, we expect to get Dylan's ashes and death certificate (which we need for family's travel discounts). We are going to scatter Dylan's ashes over the coming weeks and months in some places he loved: the park across the street, the trees he used to climb on in front of our apartments, the trees by the pool behind our apartments, the beach and the ocean, in gardens at his schools, at roots of trees in front of his two dojos, maybe even some places we traveled like Turtle Bay in Hawaii, Martha's Vineyard, Boston, Sag Harbor, his grandparent's homes, or maybe even Europe some day.
The latest (June 7: 7 a.m.): Here are three tributes from Dylan's celebration, the first from Kathy Riley, Executive Director of We Can, a pediatric brain tumor support group, and the second from Julie Wasserman, one of Dylan's teachers. The third tribute, from sensei Chris, was not written down, but we will have videos of the service soon so you can hear it, along with all the music and other speakers.
DYLAN CAN, by Kathy Riley
Dylan can. Dylan can make you laugh. It’s the kind of laughter that erupts from the gut because you’ve never seen a kid make a crazier face. Dylan can make you cry. Because he spent more than half of his young life in battle, a battle he never asked for and didn’t deserve. We will all miss him terribly but none more than his precious mom and dad and brother Chandler. Dylan can be courageous. Who could imagine a mere boy fighting so fierce an enemy year after year, for nearly six years? I doubt we would find such strength and courage in the most seasoned warrior. Dylan can bring you unimaginable joy, just by being… a sweet and giving boy… a boy named Dylan. Dylan can be a superhero. After all, there will never be another Super Dylan. Dylan, you are now our Superman.
I met the David family six years ago because we shared the experience of having a child diagnosed with a brain tumor. And because of an organization called We Can. We Can helps young patients and their families navigate the challenges that come with a pediatric brain tumor diagnosis by offering crucial support from other families who have gone before them. I’ve had the privilege of walking beside the David family for dozens of clinic, hospital and infusion center visits, for many We Can family events and for just about every We Can family camp during the past six years. I will always treasure the memories I have of campfire and the way Dylan loved to participate in the whole affair whether we asked him to act in a play or help write a song or dance like a madman. And no one present at campfire last fall will ever forget the raw and emotional voice of Chandler who sang a perfect and powerful rendition of Adele’s “Someone like you.” Chandler, you are destined for greatness.
I knew I loved Jana from the first conversation we had on the phone. It may have been that Southern charm of hers, but I think it was her honesty. Honesty that begged me to speak from a mother’s heart instead of the voice of the leader of an organization. And those conversations deepened over the years, particularly this last year when things weren’t going the way anyone had hoped or planned. Conversations about our shared faith, about how other parents handled this unimaginable road, and about how Jana would survive when she was no longer fighting daily for the life of her precious boy.
Eric, the words you wrote about Dylan’s journey over the years are a gift to us all. They are at the same time eloquent and powerful and heartbreaking. Thank you for allowing all of us to share in your soul’s journey of profound joy and deep pain. I have grown to appreciate the strong leader you are for this family and I know they will need you now more than ever.
Dylan has now walked beyond us all. He has come to life, and that is a source of joy. But he’s come to life so far beyond our reach, so far beyond even our sight, that Eric and Jana and Chandler must live the rest of their days on this earth without him. And that is the source of our tears. No parent should ever have to say goodbye to their child, and no brother should ever have to say goodbye to his Dylan.
The journey before you, dear friends, is unimaginable. And I don’t think there are any neat and clean answers from any of us. May you take comfort in the words of C.S. Lewis’s book The Last Battle: “And for most of us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story which no one on earth has read: which goes on forever: in which every chapter is better than the one before.”
I end with a charge to all of us who love and support the David family. Please talk of Dylan often. Say his name. This family will need to know you remember him and love him because they will never forget him. Remember that your children, your Dylans, will grow beyond age 11 and get to do the things on earth this Dylan never got to do. Be sensitive to that fact. Be cognizant that grief is a journey. A journey that is unpredictable and painful and takes much longer to navigate than we can imagine. Be patient with your friends and let them grieve over the years.
We all need courage to love now. Courage to love our friends, the Davids, when they need it most.
I close with a quote from the Lord of the Rings, a story of ordinary people who never asked to be in a great battle but nonetheless found themselves in that very place: ‘But where shall I find courage?’ asked Frodo. ‘That is what I chiefly need.’ ‘Courage is found in unlikely places,’ said Gildor. ‘Be of good hope! Sleep now! In the morning we shall have gone; but we shall send our messages through the lands. The Wandering Companies shall know of your journey, and those that have power for good shall be on the watch.’
You are the wandering companies and you have the power for good for the David family. Please be on the watch.
MRS. WATERMELON, by Julie Wasserman
Hello my name is Julie Wasserman and I was one of Dylan’s 3rd grade teachers.
I remember the first day I met Dylan like it was yesterday. Dylan had switched schools after being away for a long stretch and was mainstreamed into my classroom. The first time that the class was introduced to Dylan they did not know how to react. He shuffled into class a bit unsteady, had a long scar down the back of his head, wispy hair and a scowl on his face that said just how he felt about the situation. My class of 8 and 9 year olds held their breath and did not know how to respond.
When I showed Dylan to his new seat I noticed that he was looking at me from the corner of his eye. He was reading me, trying to figure out what type of teacher I was. At the same time he was reading me my mind was racing trying to brainstorm ways to ease the tension within the class. I started by introducing myself, “Welcome I’m Mrs. Wasserman and I’ll be your teacher for the year.” That is when Dylan suddenly raised his hand.
I said, “Yes Dylan”
He replied, “I thought your name was Mrs. Watermelon”. Of coarse the class started to laugh, the tension broke, and a big smile lit up Dylan’s face. He read me right because I wasn’t upset I was relieved. Dylan had a gift of knowing his audience and putting them at ease.
I had planned a few ice breakers for the first two weeks of school and one of them required a type of dance off. The class was split into two groups and they had to come up with a dance routine. I wasn’t quite sure how Dylan was going to react to this activity. Dylan stood up, carefully balanced himself and slowly shuffled over to his group, concentrating on each step along the way. When it came time for the contest Dylan had volunteered to compete, his team looked concerned. We were all a little concerned until Dylan started to dance and our mouths started to drop. Bam! He let loose and danced like I have never seen anyone dance before in my life. Move over James Brown, Dylan could get down. He was up, down, spinning and all to the rhythm of the music. Dylan did not miss a beat.
There was no question which side had won the dance off, the class unanimously agreed and had gained a respect for Dylan that would carry on throughout the rest of the school year.
Of course I had fallen in love with Dylan at that moment. Not only because I love a guy who can dance but also it was clear that Dylan had the ability to muster up every bit of energy he possessed to make the most of each moment and enjoy life to the fullest. He danced from somewhere deep down in the soul. For the look on his face while he danced was no longer a scowl but a huge satisfied grin.
Dylan was not the type of guy to hold back. When he gave it he gave it his all. Dylan liked to do everything big. His artwork was creative and colorful. When someone had a birthday, he could enjoy a piece of cake with real zeal. If challenged to an arm wrestle or push up contest he would win by pure determination. And when he had a crush on a girl, everyone knew. Dylan was not a shy boy. I wanted to say hold back on the charm a little buddy, but holding back was not Dylan’s style.
Near the end of the 3rd grade school year Dylan was scheduled for a bone marrow transplant, and I had to prepare my class for his early departure from school. I wanted to make sure that they understood the operation that their friend was going to undergo. We sat in a community circle and I talked with optimism about the operation. It was an optimistic time. After I had finished talking, Dylan said to me “That was good Mrs. Wasserman but you are forgetting one thing."
“What?” I replied.
And Dylan said, “You are forgetting that I might die.”
Wow, this shook me up but looking at my students and then to Dylan I knew they were waiting for some kind of an answer. Quickly I realized that my answer would come from my experience with Dylan. I reminded them that all living things die, and the only thing we can do is make the most of every moment. Really live, care about others, give it your all, enjoy, and don’t hold back. Dylan was a perfect example of all these things. He was a true inspiration to so many of us. From the first day I saw Dylan dance I knew he was there to teach me something, stop living in the past and thinking about the future when you can make the most of right now.
So the next time you hear the music or find yourself on the dance floor, forget your inhibitions and let go and live in the moment. I don’t know about you but I am practicing a handstand bootie shake just for Dylan. Thank you, Dylan.
THE LITTLE BEAST, by Chris Paul
[Chris was dressed in his karate gee]
Hello. As you guys can tell, I’m Dylan’s dentist! Just kidding. Trying to loosen it up a little. Hard to follow that one [a reading of “Death Be Not Proud”]. It was beautiful.
I wanted to open with comparing Dylan to one of the world’s famous warriors, and I was going through the list. And I was thinking, "Oh, the samurai, the samurai!" but the samurai arranged flowers before going out into battle, and Dylan would have no part of that. So, I thought, "Oh, the Trojans, Trojan warriors!" but the skirt thing? Not happening. And I thought, "Oh, the Sioux!" but the makeup. You know…. It’s just …. So, Dylan is a warrior in his own class, hence the name we gave him at the karate school, the Little Beast.
He was amazing. He had perfect timing. He was one of those guys that, whenever you needed him, he showed up. I ran the L.A. Marathon for him this year, and I was slated one day to do 16 miles, and I never run San Vicente Boulevard, I always run down by the beach or whatever. Of 16 miles, I’m on mile 11 and I’m like “I’ve had enough of this. I don’t need to do any more.” And I’m walking down San Vicente, and who do I see strolling in his gee, getting ready to go to class? It was Dylan and I was like, “Oh, man!” And that’s how he was, every time we needed him, he would just show up.
I opened a gym, named after him, called The Little Beast, and for three months I was working on it, hammering away and every day, I was like, “Man! You know, this might be too much.” and every time – timing – who walked in? Dylan! And you just kind of sit there and you’re like, “OK, yeah!” and you keep going, and you keep moving. And that’s the influence he had on me.
I’ve never met a kid who was so feared and so loved at the same time. You got him in the karate school and, I mean, you guys have seen him. Chandler, you’ve been hit by him. Right? I don’t know where it came from, he really had the pull and that sort of strength. He was an influence on the kids at the karate school and on me. He was pretty amazing.
I just want to read some characteristics: enthusiasm, strong, fearless, may seem dangerous, sensitive, noisy, bombastic, always helping with others’ problems, willing to lend a hand, independent, and ready to take charge. Those are all characteristics of the dragon. And that was Dylan. He was that dragon. So, any time you guys see a little dragon, that’s Dylan, our little beast. Thank you.
The latest (June 5, 5:20 a.m.): Dylan died two weeks ago today, actually exactly at this time. We have been impressed by the outpouring of love we've received since Dylan's death a couple of weeks ago. Our house is filled with flowers, origami cranes, notes from Dylan's Joyful Noise choir mates, hundreds of condolence cards, all the foam core posters of Dylan from the service and the theater, and quilters are making us a quilt out of Dylan's favorite T-shirts. Some friends have planted 25 trees in Dylan's name, and Jana's family is planting a tree in Dylan's memory at the beautiful house where they stayed that was given to us as a favor from a friend. Many have given to the theater, and the church programs we support (see above). We will soon have a recording of the memorial service that we may be able to put online or make copies of for out-of-towners. I'll update more when I have more info.
Chandler was so sad when the show he was in, "Freckleface Strawberry," ended Sunday (his favorite show of the dozens he's done so far, and he grew SO close to the other kids in the show). We also got to hear him perform with the vocal group at school called the Overtones last night. His voice is just sounding stronger and stronger. A separate group of friends from Chandler's grade school all got together, just to celebrate him, and his church youth group sent a gift basket filled with candy to congratulate him on a great show. We are changing the boys' room to just be Chandler's room now, and we are getting him a new bed, to replace the king-sized mattress on the floor that the boys used to share. We will keep many photos and touches of Dylan around the house and Chandler can keep any posters or things of Dylan's that he wants. Chandler's last day of classes is today and he has a celebration ceremony tomorrow. So many important things coming to a close for him....
Dylan would be graduating the fifth grade today, if it wasn't for cancer. I'm sure his classmates at both schools miss his presence. We are reading one memory about Dylan each morning from his memorial service. It is very touching. Many folks online have tagged photos of Dylan and sent them to us, or even made those photos or the SuperDylan logo into their profile pictures in his honor. Also, hare a few online tributes to Dylan from various friends of ours:
A tribute from a camp counselor. See Dylan Dance in the video!
A moving tribute by a photographer friend:
Tributes from an Instagram account Chandler set up and ran:
A tribute from a former co-worker from myspace:
A tribute from a former fellow congregant at our house of worship:
A cartoon drawing by a former sensei:
Alex's Lemonade Stand memorialized Dylan as an official Hero:
A tribute from a woman who never met Dylan, yet was impressed by his story:
Our church has shown support not only at Dylan's memorial service, almost all of the services for which were donated or fees were waived. Also, the church had Dr. Margaret Stuber, chair of psychiatry at UCLA, and a grief counselor, speak at our church again. Her talk is available on CD for $3. Contact the church office for a copy at 310-826-5656 or via email at Sharron.StJohn@bpcusa.org. You may recall Dr. Stuber gave a talk when Dylan was first on hospice, that you can listen to here, that has very similar ideas: http://kiwi6.com/file/zonrv71gcp
The latest (June 3, 2013: 6 a.m.): Chandler's last play and wrap party were both yesterday, and they were both amazing. Thanks to the many friends who came out to support Chandler in person -- so many new fans have discovered how incredibly talented he is and how impressive the productions always are. We also thank those who signed up to support the Morgan-Wixson Theatre (link above). And thanks to the theater for dedicating all their productions to Dylan's memory. They are already starting on "Alice in Wonderland." He had two more birthday parties over the weekend, and his last day of school is Thursday. Summer is upon us!
Dylan's memorial service Saturday was also sublime. It was pleasant to see our extended family, and we got to use a most paradisaical vacation home as a gift from a friend. I helped plan the service with our worship planning team at our church and it was held up at Bel Air Presbyterian, which has a beautiful sanctuary and some breathtaking views. Our counter estimated there were between 750-1000 people there. You may view the bulletin at the bottom of this page, under Attachments.
The memorial was bright, poignant, sad, funny, heartbreaking, uplifting and very, very beautiful. We may post audio or video of it online -- I am working out some of those details. (We are also planning a private family farewell to Dylan, sprinkling his ashes in special places that he loved.) But the ceremony was a memory I wanted to make for me, Jana, Chandler, our extended family, and everyone else who knew him either personally or virtually.
We had beautiful music (some favorites of Dylan's and of Jana's family's), we had readers of poetry and scripture, including emotional readings of the 23rd Psalm in Hebrew and John Donne's "Death Be Not Proud," and three unforgettable speakers who remembered Dylan's strength, courage, wit, perseverance, and unbounded love. Another congregation had made Dylan a thousand origami cranes and everyone at the service was given paper to make their own crane at home, and write on it how Dylan has changed their lives. We have already seen some photos of people's cranes on Facebook, as well as photos of them proudly wearing their SuperDylan temporary tattoos that we handed out. On another piece of paper, everyone was asked to write a favorite Dylan memory and put it in an envelope. We open one every day and have enough to last more than a year. Dylan has touched so many lives for the better and it helps the grieving process to know so much good came out of his 4,014 days on the planet.
We are so grateful to everyone who volunteered at the service, who traveled great distances, who fought the traffic and the heat to come out for it, who sent condolences online and in the mail, who brought meals and sent gift cards and checks, and especially those who will remember just to love. I made a video slideshow for the service, and I gave the eulogy.
Here is the slideshow I made. (Or scroll to the bottom of the page to watch it embedded.)
And here is the eulogy I gave:
REMEMBER JUST TO LOVE, by Eric David
In July 2007, my family was hit by our own personal 9/11. We were under attack by an evil more frightening than terrorism, more torturous than Gitmo, more outrageous than collateral damage, and it was our little son, Dylan, in the crosshairs. An MRI (the first of hundreds) showed tumor had been growing in his brain since before he was born, through no fault of his own or anything we had done; the tumor had to come out the doctor said. The next morning.
Long before cancer intruded into our lives, he was called SuperDylan because of his amazing physical strength. He also had a smile that could melt the coldest heart, and a hug that could crush the toughest bodybuilder. His blue eyes radiated love, his cheeks were hard not to pinch and his golden locks were from a museum painting of a young god. He had his favorite TV shows (Ben 10), and loved to play games, be with friends, eat sweets, and shock others with his quick and mature wit. One of his last sentences to his mother, when he was being a little disobedient, was a shouted “I’m coming, you idiot!” in a library no less.
But cancer and its treatments slowly peeled away layers of what we had always thought was super about SuperDylan. During his first surgery, he had a stroke. His beautiful physical body was laid low and he had to learn how to sit up, feed himself, how to speak, then walk, then run, to the point he had regained much strength and balance, but he knew in his heart how much stronger he even could have been if it wasn’t for the stupid cancer. He lost his beautiful hair numerous times and suffered some brain damage from radiation. Problems with his vision and his hearing made school that much tougher, but he showed a focus and determination to keep up with his classmates that would make a Rhodes Scholar jealous. But his growth was stunted; and it broke his heart to see other boys doing things he just couldn’t. Playdates got ever harder.
As treatments and seizures took their toll on Dylan’s memory, we lost more and more of him, yet found parts of him that had been hidden under the peeling layers. He lost his rage, and found a core of love and tenderness that made his last days a true blessing. He lost his left brain capacity to remember words and place names, but his right brain came bursting alive with drawing after drawing, some of which you can view at the reception. Even with the loss of his short term memory, we found simple pleasures in reminding him again of an upcoming birthday or holiday and seeing the glee repeated on his face countless times.
But while we celebrate his life today, we also mourn what was finally lost: his life. His end was quick and peaceful, but the absence of his being brings a deafening silence to our home. The feel of his hand in mine crossing the street; rocking out to Led Zeppelin on the way to school, his soft voice whispering, “I love you” to all three of us at night; wrestling on the mattress, the countless games of Uno, Profiteroles at Pizzicotto, the patio after church for donut holes, and the moments of grace, love and wonder from all over the world; I’ll even miss his neediness and outbursts and R-rated rants.
His memories will be with us, to be sure, and his legacy will live on in many ways; but, especially as a father, I mourn that he will never have that first kiss, those awkward moments with girls, the first shave and the “talk,” the driving lessons, the goals and home runs and touchdowns, the diploma and the tux for his wedding. He’ll never hold his own little boy; and thus have faith in humanity restored, hope for the future rekindled, and love for another person sparked with an unquenchable, intense flame that is like no other love on earth. He will not get to mourn my own death, the way it normally is. But my hope is that there are things we will gain from this last loss that we don’t even know yet. More courage, more wit, more fun, more relish for life’s little pleasures, more reminders to remember just to love.
Dylan thought God was “awesome,” that’s a direct quote. A friend told Jana that her son said Dylan knows more about God than anyone else in their Sunday school. He and I talked a lot about heaven and I just let him imagine it however he wanted it to be. Ice cream, movies, seeing his family and our deceased cats, and having a “good” body to play with were the main bullet points, but he didn’t want to wait so long for his friends to come. And since Dylan has a lot of friends of various faiths including Jews, Muslims, Mormons, Buddhists, New Agers and even a militant atheist or two, we wanted to respect and represent Dylan’s childlike tolerance by including some other faiths in this service of celebration. We happen to come from a Christian tradition, but we have seen God in the empathy we’ve gotten from people of all religious stripes. As they sing in Les Mis, “To love another person is to see the face of God.” Religion is optional. And, speaking of Les Mis, you all must know by know how we have tried not to lose focus on Chandler through all this.
With that, let me close with two poems, one by the Persian ecumenical poet Kahlil Gibran, the other by Johnny Gunther, the boy who died of brain cancer in the classic Death Be Not Proud, an unbeliever. Gibran reminds us:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.
And Johnny Gunther, who died in 1946, wrote this brief but powerful prayer at the age of 17, the first half of which sort of sum up my own feelings, the second half of which certainly summarize Dylan’s.
The Unbeliever’s Prayer
forgive me for my agnosticism;
For I shall try to keep it
gentle, not cynical,
nor a bad influence.
if Thou art truly in the heavens;
accept my gratitude
for all Thy gifts
and I shall try
to fight the good fight.
The latest (May 28: 6 a.m.): Dylan's celebration of his life is this Saturday, June 1, 2 pm at Bel Air Presbyterian Church (note: NOT at Brentwood Pres: our church is too small to hold the expected hundreds of mourners). The service will be uplifting and fun. Of course there will be tears, but Dylan would not have wanted much of that, versus the laughs and songs. We want to remember Dylan's spunk, wit, energy and love. There will be music, stories, and a reception afterwards. Kids are welcome, all faiths are welcome; and colorful clothes are encouraged, California casual dress is appropriate (SuperDylan or Little Beast T-shirts included, as are karate gis). If you wish to dress in your Sunday best, you may do so as well.
A dear friend who lost her husband last year arranged for Forest Lawn to come take Dylan's body for holding until we decide what to do with it. I carried him, already stiff as a board, down the stairs (what a great week for our stupid apartment elevator to go out) to the van (thankfully not a hearse). We uncovered his head and kissed his sweet cheeks and lips one last time. Jana ran after the van until it was out of sight.
We've had so many visitors, meals, flowers, cards and messages of support, as well as many photos online of Dylan from various parts of his life, some of which we had never seen before. Jana's sister and my parents are in town, and we're expecting many more over the next week until the memorial service. Another dear friend has given Jana's visiting family her large vacation house to stay in over the weekend.
So many have asked how they can help us. We are doing well, but Jana and I would love to support grieving big brother Chandler and the theater he so loves. They have done so much for him, and we want to give back. It's really his second home (maybe more like his first?!), and Dylan absolutely loved seeing shows there. He would always point at Chandler when he saw him on stage and, later when his memory was gone, he would wave at Chandler, not realizing that he couldn't wave back. He would roar like a lion and scream during applause, shouting "You rock! You are awesome!" They are dedicating all the remaining shows to Dylan's memory. We are urging in lieu of flowers or cards to send DONATIONS to the theater. Here is the link:
We decided not to have an autopsy done since it wouldn't really tell us much; and the oncologist does not need his brain tissues for any research or his other organs for any purposes, so our friend who is handling everything is letting Forrest Lawn know to go ahead and cremate him and issue a death certificate. We should get the ashed and documentation in a week or two, I suppose.
This Sunday, Dylan's birthday, it was hard to not have Dylan here, a little 11-year-old to wake up and go get out of bed to open his presents. His friends had a huge early bday party at school for him on Friday, in his honor. He had so been looking forward to it (and with his memory gone, he got to re-learn that his birthday was coming up over and over, so he was exponentially excited). We opened his presents for him and the rest of the day was somber. But the performance of Chandler's musical that day, dedicated to Dylan's memory, lifted everyone's spirits. SO many people came out to support Chandler, and he really shone. We went to my cousin's house for Memorial Day and raised a glass or two in Dylan's honor. I put together a playlist of songs that mostly represent my emotions at this moment. You may listen to it here:
Chandler has been kept busy with lots of holiday parties and rehearsals for his next play, "Alice in Wonderland," in which he plays the Gryphon. Chandler seems to be handing things alright. I'm sure there is anger and sadness, but there must also be relief to focus just on his current show and on school. His friends at school really showered him with love when he went last week (he stayed home again today), and the administration is being enormously helpful and caring.
A relative reminded me that our David family motto on our crest is Pax et Copia ("Peace and Plenty"), which appears to be something we, through Dylan, have been able to bring to many thousands of people around the world with Dylan's story. Although often thought to be Jewish, our last name is actually Welsh (St. David is the patron saint of Wales) and, although I'm adopted, I also note that the first name Dylan is also Welsh, meaning roughly: "son of the sea." The names evoke the many ebbs and flows of this journey with him; the windless, listless days as well as the storms, and the glorious days with a strong wind for kite flying and good waves for jumping, the sandcastles and, finally, the sunsets. Pax et Copia.
The hardest times are in the early morning, when Dylan would usually slip into bed between me and Jana, before we had to get up and face the day. He would always touch us, and hold our faces, and tell us how much he loves us, and then he would say, "I'm sorry, but your breath stinks!" and turn away. :) The slightest memories like this, along with seeing all the memories posted on Facebook, all send me spiraling into uncontrollable weeping until the sun is up....Then I man up and face the day.
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