I may as well try and catch the wind....

Autumn 2015

Social distancing, being on lockdown with your family, hand washing and isolation are all life altering changes we’ve had to make this week. For most humans, this is a big deal. For cancer families, this behavior is painfully normal.

During the two years my son Louie lived with cancer, we adhered to all of these standards. He endured radiation on two different occasions and chemotherapy throughout. It seems caustic to ever use the word lucky, but Louie avoided additional illness. We were persistent about cleanliness and
handwashing. Spending so much time in hospitals we incorporated techniques to evade infection. They have become a part of our life.

During those two years, we were essentially on lockdown. By nature of cancer, you are socially distanced, isolated. People reach out initially with love and intent. It erodes. We waded through the days. Everyday revolved around appointments and meals, movies and games. Passing the time became remarkably easy. Organizing a closet. Bopping a balloon. Building a Lego set. Sifting through Instagram. Reading Harry Potter for the 30th time. Online quizzes. Naps. Watching trick-or-treaters from his bedroom window. A walk. A song on the piano. Dairy Queen. The cat. Maybe school work, if the energy was there and the desire. Slugging along, feigning positivity and hope until I truly believed it. Being home again, all day in the house, reminds me of that era with Louie. He endlessly wandered about, very few connecting with him from the outside world, his previous life. Whenever I felt sad I said to myself “Louie’s here now, he’s alive”. The full weight of his sadness in reflection, is too heavy, with nowhere to land.

Louie was in the hospital for the last 38 days of his life. Communicating only through hand squeezes. I left his room only to go three doors down for tea. We sat together for 38 days. Again, wading through the
days. He was there, he was alive. I only needed that to keep breathing.

August 22nd, the day we reluctantly left the hospital. Walking out of the office of the cemetery and down 5 stairs, my knees ached. I will never forget that odd, physical feeling of pain, jolting me briefly from a trance that I am consequently still in.

The most difficult posts to read are those complaining about the sudden togetherness with your children.  For one moment, please think of those of us who have lost ours. I can tell you despite the uncertainty, the time will always be worth it.

Autumn 2009

If You Were an Ocean, I'd Learn to Float...

Three years in and the grief is oppressive. Louie should be starting his freshmen year and all I can consider is our last proper hug, an impromptu squeeze as he passed me in the kitchen. I am sad for the two+ years of his life with cancer; doctor’s visits, loneliness and pain he endured. I am sad that’s he’s not here, despite the selfishness of that. I am sad I’m no longer a mom. That our home is quiet. That we cannot move in any direction.

I stay home and do nothing but feel sorry for the impassivity I have toward life. I work and feel distracted but covet the family I lost and bury my sadness. Some moments I feel like we should live. That Louie would be so upset if he knew just how sad we are. But we can’t.

Some things in Louie’s world still exist. Harry Potter. Ninja Warrior. Slogans we thought were funny (we have the meats). So many other things evolve. Trends. Slang. His friends will drive. Head off to college. Start families. In most ways, time feels frozen, often as if he just left. Isolation can do that.

We desperately wanted to have Louie’s biological sibling but the toll of depression and age has prevented that. We got a dog, but it makes us heartbroken that Louie never had a dog. A nighttime run-in with a raccoon goes from funny to somber when I want so much to share the story with him. As we consider adoption, the arduous process is prohibitive and may unwillingly force us to find joy. Once Louie said to me that he had just realized when he had kids they wouldn’t have any aunts or uncles. I feel like every trace of him is gone. And it breaks me.

Louie and I spent time on the simpliest things. Games. Puzzles. Walks. Reading. Talks. We played a game called ‘What’s coming next?’, where we predicted the style and color of the next car to drive by. Chatting in between. We played ‘Bop the balloon’, going back and forth with a remnant balloon from the last event anyone attended. Uno. For hours. Every night before bed, I gave him a hug, a kiss and a squiss (an amalgam of a squeeze and a kiss). When he was 4 and fighting bedtime, his face would re-appear asking for one more “huggy”. Of course Louie. A bazillion more hugs please.

Pumpkin Patch. Fall 2009.

I miss so much to see life through his eyes. I’m completely fragmented. We were open and honest with each other. A counselor came to the house once and Louie shared that he didn’t really want to be here anymore but we encouraged him to keep on. After a day at the movies with Louie and friends, I noticed that the normalcy of others exposes the abnormal plane on which we live. I need his encouragement to carry on, desperately.

In November 2015, we drove by a pond and Louie recalled asking us for coins over the years to toss in. I said I wondered what he wished for all those years ago and he said, “Not this”.

Transfused

I sit. Stare. The blood wending inside you. Bolster. Flush. A pink smiling mouth. Cancer inside the mind. Once of brilliance and creative ferocity.

Now rapidly dividing. As I watch.

I want to scream at your head

GO AWAY

Leave us be. But instead, I sob. Crushed. Sick. Jovial when your eyes search. Smitten and bitten. All at once.

GO AWAY

written early 2016

Please Hold, Just a Crane.

When Louie turned 6, his birthday party was at the local botanic garden. He and his friends had Angry Bird cake pops, learned about butterflies and got to release one into their exhibit. His butterfly was the largest and most glorious (to us) and seemed to cling to Louie for quite a bit, despite its newfound freedom.  We stayed close until it was ready to test out its wings.

In the moments before the party started, a woman was folding cranes and regaling anyone who would listen about the origins of origami. She gave Louie a tiny crane and it still sits in his room among the tiny creatures children amass over their lives. We dusted around it, moved it here or there, but it always stayed nearby.

When Louie turned 8, his birthday party was in the back of his favorite sushi restaurant. The kids learned to roll their own sushi. We made takeout boxes with Hi-Chews, Domos and their names written in Japanese. As we waited for the sushi rolling to commence, one of the activities was folding cranes. We discussed the legend of 1000 cranes and despite prepping to instruct the kids how to fold them, I resorted to Google to get through it. This was also the birthday Louie asked his friends to bring games and crafts to donate to our children’s hospital in lieu of something for him. This was over a year before his diagnosis.

When Louie was sick, prior to our first trip to New York for a trial, his 5th grade teacher gathered a group of upper school kids to fold cranes for him. These were older kids that stayed afterschool for days to fold paper cranes. His teacher delivered the cranes moments before we left for New York. We immersed ourselves in the variety of colors and patterns; I felt so positive, that these thoughtfully folded signs were saying Louie would emerge healthier and stronger. Alive.

And now, we are weeks away from his 13th birthday. He said he didn’t want to have a bar mitzvah, that he wanted to convert to Buddhism or something else for a few weeks to avoid it. He agreed finally when I said we could forgo the madness and sojourn instead to Israel or anywhere else. He offered London because, Harry Potter. Fine. London. Only we’re not there. Instead we’re visiting his grave to give him details of the last Simpson’s episode or tell him about money we’ve raised to help find a cure. We bring him rocks or coins or other trinkets he treasured, a hedgehog, Pikachu, etc.. Today we brought him 2 of those cranes that were folded for him. I added the words #cranesforana and his name to them. Ana is a girl in New York, who died a year ago from cancer. I’ve only had written correspondence with her mother, who writes about grief among other things. When you have grief like we have, it manages to hijack all other emotions.

As the weather warms, we try to hide children’s voices outside by making the TV louder. I go weeks without hearing from friends, now realizing a response on social media was all they could muster. I've come to pragmatically realize I had no friends at all. And I'm at peace with that. I try to keep busy until 4:30 when I think it’s acceptable to spend the rest of the evening watching the news, Jeopardy and Simpson’s reruns. When I work, I spend the time pretending I have a son who is almost 13. When people groan about that age and what I must be going through, I wish with every cell I was dealing with the tumultuous emotions that reside in a 13 year old boy. Instead, I’m wishing for him back or at the very least to have things stay the same. I dread the day I stop hearing songs he liked or commercials he thought were ridiculous. I’m only looking forward to the next Harry Potter movie. Aside from that, each day rolls by, where I miss my Louie a little more. I realize that everything, even folded cranes, just ease the pain for a moment. But I know how much a moment can mean.  

#cranesforana #universelouie #thegreatloudini

The Harm in Happy.

I cringe when I see the comment “life is good”. The pile-on of happiness is everywhere. Yet tragedy abounds, anti-depressants are rampant and we’re supposed to go along with this happiness farce?

My birthday just passed. The first one in twelve years without my son. And everyone had the audacity to say things like “happy birthday” “hope you enjoyed your day” “cheers to a great day and year ahead”. Are they insane or insensitive? Did they forget that my son died? What I wish they’d have said is “I’m sure today sucks and I’m sorry. I love you”. Apparently in the midst of their daily dramas smothered in happiness, they can’t conceive of the daily struggle I have just to stay alive.

Three years ago on my birthday, Louie was healthy (seemingly). I was traveling on the actual day but when I came back we celebrated with sushi and the most hilarious card I’ve ever received. Handmade with a printed picture of Louie and Neal.

Two years ago Louie was sick. He had already been diagnosed with a reoccurrence of his cancer and had an MRI that day. I always went in the room with him for scans. He would watch a movie and I would stand at the end and rub his feet. He laid in there at least a dozen times, for the hour & a half, with calmness unmatched. I thought it would be good news but it wasn’t. The new regimen wasn’t working. The pictures from that day show my swollen eyes and blue tinged lips (from sno-cones). My tears were hidden but persistent whenever I turned away from him.

One year ago I was in the hospital while Louie was dying. We had been there 7 days already and would endure 31 more. He could barely speak, responded minimally with nods, hand squeezes and eye contact. And people still wished me a happy birthday. This is what I wrote that day in 2016.

July 23. "I think he can't differentiate minutes and hours". Well. The shittiest of all birthdays. Literally, Louie pooped for the first time in a week. I suppose the shittier ones will be every one after this. At least this year I got a hand squeeze and snuck kisses and stares endlessly all day. Still warm, still adorable, still here. The doctor answered my question as to whether being awake is a mental torment for Louie. Given he moans a bit throughout the day, it is physical and mental torment on us to discern what's wrong. Anguish vs pain. I’ve seen him reaching for something for a few days, hanging right in front of him with his left hand. There's a word for it of course, it's called delirium. And, of course, a medication as well. Not yet though. The doctor apologized for her "hours to days" comment a week ago, she didn't mean to cause more upset. I asked since he's been so stable, should we be home? She said at this point we should stay. It's certainly slightly more comfortable for us, Louie's bed here adjusts, the nurse pops in hourly to help with moving him, changing him, medicating him. It's certainly much less personal. I got lots of notes today - some said happy birthday and some just said birthday. Neal got me a card that said "I thought Louie would like this one." Our whole life will be us surmising what we think he would like.

Yes, we are always saying “Louie would like this” or “which one do you think Louie would like?”. We continue to be tormented by Louie’s last weeks and the two years he was sick. It was clear though, through the anguish, there was some semblance of happiness in his warmth and heartbeats.

This year my husband just said "birthday". No cards. No gifts. And that was completely fine. We went to Louie's favorite restaurant for dinner. And toasted him with sourdough bread. 

Please don’t assume because you’ve moved on, or because you see the bright side, that everyone does or that there even is a bright side. These tragedies will always sit near the surface. I can’t fawn over your children. I can’t tolerate your complaints about minutiae. I can’t celebrate the pregnancies you flaunt. And I can’t have a happy birthday. Ever.

“Nobody has ever measured…how much the heart can hold…”

It’s been nearly nine months without Louie. That’s almost as long as it took to create him. The highlight of each day; knowing one more has passed. One closer to no sadness although I’m desperate for the months and years since. My life is distilled into three parts. Nothing. Louie. Back to nothing.

I dreamed a few weeks ago that I was sitting, and Louie walked up and let me hug him. I could feel his warmth as I squeezed his thin body.  I awoke feeling like he was there, somewhere. After he died, I hugged him until I absorbed every last bit of warmth. No longer the comforting hug after hurt feelings or a fall, but a hug trying not to let life escape. I swept every tear that left my eyes in his hair. I didn't think of it as giving him my sadness, rather my love.

I walk by his empty room, it’s perfect. His favorite hoodie and the tee he wore during his last breaths, washed and folded at the end of the bed. The only thing missing is Louie. I clean his room, dust it and sit. Sometimes I read one of his books and recall the hours, years, I spent getting to know him.  I think of all the empty rooms in this word cancer has left unoccupied. How many parents tip toeing past hoping not to wake their kids, desperate for 5 minutes of peace? How many parents, screaming at their empty rooms for their children to come back? 5 minutes of life.

I miss him so much it feels claustrophobic. I want him back so desperately.

I never took being a mom or Louie for granted for one second. I, we, wanted to spend every minute we could with him. I tagged along on playdates. I was addicted to him. I spoke through him, around him. We’d cower in the corner at parties enjoying each other more than we did everyone else. We had antics between us, we totally got each other.   

When he was a baby, I would watch him sleep and cry. I’d tell my husband “I don’t want anything bad to ever happen to him”. We let him down. He went through 2 years of essentially torture for nothing. Sometimes his spirits were good, and we worked really hard to have enjoyable, even fun moments. But those parents who say their child had a “smile on their face every day” must be liars. When your child won’t eat and you watch a feeding tube shoved down their nose. When everything they do eat makes them sick.  When they are so listless they roam from one room to another, from one movie to another. When they awake at 2am and you read to them and would never sleep again if it meant they were comforted. When your child is wheeled back for surgery, to be gone for hours and you watch their eyes as they move away, they seem so brave, even if for your comfort. When you wait for them to wake, only to proffer the next round of pills. When you can’t tell him that all hope has escaped and can only say you’re giving his body a break, time to heal. We failed Louie. He trusted us, did everything we asked, and we failed him. If I told him he could skip a pill, even a vitamin, he would firmly say no. He wanted to do anything to live. “Sometimes I want to give up” he looked at me and said once, “but you won’t let me”.

With no other children, there is no reason to feign joy. I could live my life in isolation and it would likely go unnoticed. Self-absorption must be at an all-time high. I can’t bear the social media reminders of the tedious and boastful. Everything I do is forced and coerced. What I want more than anything is to do nothing, to be nothing. When your child is your everything, and they die, what you’ve left is completely meaningless.

We cling to each other, the only two people on earth that share this story, this love, this loss. I look at images and can recall what transpired on those days and I’m almost there, in that moment.

But as we approach these next months and those memories, Louie feels so distant. Everything has progressed, everyone has moved forward. And we’re still here, wishing it hadn’t. Only once has someone asked if it’s gotten any easier, one of Louie’s doctors. Losing children must be what working late or giving a bad presentation is to the rest of us, a rough day. No, it hasn’t gotten easier. And waiting for it to get easier is like shrugging off the meaning of Louie’s life. I’ll let others evangelize about strength and resilience; it seems so forged and aspirational anyway. I’ll sit aside, help others when I can, busy myself with just enough, sleep a few hours and wait for another day to pass.

"Nobody has ever measured, not even poets, how much the heart can hold." -Zelda Fitzgerald

Why 2016 isn't the Worst Year Ever.

The worst thing I can imagine transpired this year. Everyone can’t wait for this year to end. This year had Louie in it and next year doesn’t. So I don’t want this year to end. Ever.

It’s been over 4 months. It feels like 40 years. Each day more limitless than the next or the last. Staying busy staves off the sadness but cover up is rarely constructive. My mind isn’t wholly here – the smallest tasks take ardor. Unrelenting excuses for my inaction in an effort to absolve myself from the requirements of life. My memory for the recent is short, my recall of Louie’s last days and moments is so achingly clear. My life has been eviscerated. He was the air I breathe. Sometimes I imagine him in the room with me. The reality that he is held only in my mind and in photos guts me. I imagine his adorable chin, how it felt to give him a hug, what he smelled like.

But choosing joy? I’m not sure I’ll ever be ready. Moving on because that’s what he would want? Not sure I know what this even means.

It’s so difficult to see anyone. Tortuous. To see exultant behavior touting the counterfeit brightness of lives feels fraudulent but maybe it just feels unfair. To everyone.

We visit Louie twice a week. We stand there and fill him in on what’s happened and what’s new; which Simpsons we last saw or interesting events. We cry. I’m afraid he is cold down there. I wish I’d have given him blankets and more hugs for his rest.

Pointlessly searching his name led me to a video of him on You Tube presenting a game idea in a tech camp. He was articulate and funny, nervous but confident. I paused the video at the 11 second mark. He’s making the face one does when holding back an uncontrolled smile. I don’t recall seeing it the first time – I always loved watching Louie when he didn’t know it. Seeing him interact with friends or teachers, chatter quietly in the bath, anything. It was like knowing another facet and this video feels like that. Like there are things about him I can keep learning.

I dream about Louie sometimes. I awake so happy, like we got to hang out. But the reality of daylight is a monstrous cycle I want out of. All I want is Louie back. We bought him a Lego set he’d voted for online, a Cubs championship t-shirt and sometimes we turn the light on in his room. Just in case.

But 2016 is the last year with memories of Louie. The last year I’ll take a photo of him. The last year I saw him and loved him. So, no, I don’t want this year to end.

July 2016. Last family picture, discussing coins.

Let Me Always Be With You....

11 days. Our hearts have managed to continue beating. The sun keeps rising. I can't determine if it's magnetic or magic or mirage. Sink or swim. Sink and swim. Sink. Swim.

In some ways, we've been mourning Louie since May 15th, 2015, when we learned of the recurrence and his chances of less than 5%. Not zero, not zero, I kept repeating. He saw my tears but missed my sobs. We hid some emotions, not most. I disagree with many on what it means to be strong. There is an authenticity to tears and anger. They can't always be tucked aside; our family dynamic is honesty, that held us together. "Be honest to those you love, show your pain. To suffer is as human as to breathe" - Albus Dumbledore.

Everyday I woke up, I said to myself "Louie's here. Louie's himself," and that would embolden me to face each day. One night early on, he seemed awry, even upset. He thought we knew something he didn't. I promised him, "Louie, we will always tell you what we know." he lightened. I could not always adhere to this, but did my best, and that makes me terribly sad. A betrayal. 

In December, we mourned Louie again when pathology told us all the treatments had stalled the inevitable and his chances now rounded to zero. We deliberately and desperately agreed to more treatment knowing it may give us up to 9 months but hoping with every atom it would be long enough for some trial, some breakthrough, somewhere. We hustled every contact we could across the world for ideas. He was never symptomatic aside from energy and blood counts; relenting seemed absurd. So we persevered.

Despite stable scans in early June, we could see him beginning to struggle with connections, and his verve escaping. June 30th it was confirmed, things had changed, no further treatment was recommended. Those five words (there's nothing else to do) are way worse than the typically notorious three words (you've got cancer). And we mourned once again. I did not, could not, share this with Louie. We told him his body needed a break, to heal. He should sleep as much as needed, we would have nurses come to the house to save his energy, and it may get worse before better. I was certain a day would arrive when he would ask "am I dying?". I still don't know how I would have handled that question. His ability to speak eluded him before he could inquire. Telling him the news without his ability to respond, unsure of his comprehension seemed inhumane. I am plagued by the thought that he was scared or confused or even lonely.

For two weeks we tried to manage at home, I camped in his room juggling and imparting pills during conscious moments. Reading, offering hydration and talking. July 15th we realized it was time for the hospital. He wasn't able to move a lot in bed, I was carrying him to the bathroom, and medications were a challenge. I dragged my feet knowing, once we left the house, we would come home alone, without Louie. Carrying Louie out of his room for the final time, out of the house, a glance at the garden before his last car ride and then lifting him onto a bed at the hospital; excruciating, the finality. We began mourning again.

He asked me that day "when can we go home?". I kept answering "soon" and that for the time being, I told him, we were safer at the hospital. We needed their help as his body rested, but we loved him and if he needed to sleep, he should sleep. I'd say "It's good, Louie, you're doing great, we are all here together, we will always be together no matter, the three of us". We were told that first day "hours to days". We were in that room for 38 days. We watched his movements diminish and his language evaporate. A macabre countdown. We communicated through our eyes, hand squeezes, arm wrestling, nods and the occasional grimace. Louie's last words were "I can't". The day before he died he kept trying to sit up and say something, reaching his arms out as if for a hug. I grabbed his hand to see if he was in pain. No response. I asked if he was frustrated. A squeeze.

Louie died on 8/22 (double his birthday of 4/11). 8/22 is my moms birthday. He is buried next to her. He whispered to me in July "twenty-two". The context was unusual and curious. He knowingly lived with cancer for 2 years and 2 weeks.

We sat with Louie for hours after. Traveled with him. Kept him company. I held his hand as I'd done since his birth. I clung to his stomach where I could steal every last bit of warmth. I dampened his hair with my tears. Love and sadness, but mostly love.

Louie suspends in time. Although he was 11, he wasn't really. He hovered at an age somewhere else; missing the independence and bonds of a typical 11 year old, his reliance on us kept him in midair. His untimely experiences made him unfortunately wise.

Good morning, Louie. I say this daily. Sometimes it's 'Good morning, bubbe' or "Good morning, gorgeous'. We talk about him all day - would he like this, remember when he did this. There have been moments of severe sadness, we stay isolated for the most; facing our world again seems insurmountable. We've been mourning him for so long already, the pain now, at this second, doesn't seems as oppressive as watching him fade. The guilt of his undertaking is a burden. We believed it'd be worth it. The torment of his inability to ask questions or speak is my greatest sadness, those last 5 weeks. As long as we could talk, we could help each other carry on. Precocious, garrulous Louie. Those last 5 weeks. "I can't."

It's not seconds we missed - our lives were devoted to him, everything altered for him from the moment he arrived. What we will miss is the space. We know him as he is, with the world around him as it is now. With a certain future, his friends will age, the world will adjust, and our interpretations of his non-evolving self will be speculative. Parents, do you really mean it when you wish you could stop time? There is no present, only past and future. Bask in it all.

There was an exhibition at MoMA this summer called "Unfinished". It featured a work by Alice Neel of a soldier. She had painted his head, neck and one hand; the balance of the painting was a sketch. She signed it and included it in her exhibitions. She deemed that unfinished painting finished and perfect. I will try my hardest to imagine Louie as finished and perfect.

We've lost our "ikigai", our reason for being, why we wake up each day. But we will continue breathing his oxygen, looking for clues, hints that he's with us, walking where he walked, touching where he touched. Surrounded by his images, his collections, his creations; already struggling to remember what he sounds like, smells like. His soul is energy; it can't be destroyed, even though we are. I asked Louie last summer if he could switch places with anyone, who would it be. He answered "Me...without cancer". I will hold him to that.

                                        11 March 2012

* Title inspired by Annie's Song by John Denver

This Old World Keeps Spinning Round...

It's been nearly a year since we found out Louie's cancer was back. That day, standing in the hallway as the doctor asked to see us alone. I knew. I fucking knew. "Not hopeless" they said. We cling madly to that.

I often have a dream, the scene alters but the emotion sustains. I'm running from something or to something and it's as if my feet are mired in sludge and responsibility. I can't get there. Wherever. Anywhere. I strain and exhaust myself, but cannot move any faster than murderously slow. I've always had this dream. Now from dreams to days, but mostly I'm okay with stretching the time.

In the last year Louie has had surgery to implant a port in his head, chemo delivered directly to his brain, chemo infusions, taken up to 30 pills a day, tried various oils, meditation sessions, injected with shots to build up his white blood cells, blood and platelet infusions sustain him, high dose chemo which rendered him in the hospital for weeks with such pain he couldn't eat, two lumbar punctures to see if his fluid was clear of tumor cells (one wasn't, one was), bone marrow aspirate to ensure his marrow was healthy (it was, just struggling to reproduce due to months of treatment), two seizures that haunt me daily, a second round of radiation, a biopsy to tell us the cancer was not only still there but 'exuberant' as explained by the team, he's been visited (and kissed) by a mystic and traveled for several weeks to Memorial Sloan Kettering for a trial where liquid radiation was delivered to his brain. Continuing to uncover options; we will revel that we still have some. The unimaginable day alternatives halt is also haunting, looming almost. Now we try to get our hands on experimental immunotherapy drugs as well as one we must get overseas and research every trial on the planet to see if he's eligible and moreover if his body can handle it. 6 months ago his Dr. told us no one expected him to make it this far. His cancer got worse, then better, then worse and now better; that should illustrate the transient nature of this. And the absolute volatility.

"I'm never truly happy, there are just things that take away my sadness". He's been exhausted, sad, angry, perplexed. He has said that sometimes he wants to give up but we don't give him a chance. He has said he "feels like he's dropped something along the way and is only just realizing it". In September of 2014, my mother-in-law came to stay with us in an attempt to cheer Louie up as he was halfway through his initial radiation treatments. She said to me, very matter of fact, "your little boy is gone, whatever happens, he will not be the same". I just looked at her and nodded. There were no tears. It was pragmatic, but she was wrong. I would get my Louie back. He would be slightly altered maybe, every day has the potential to change you and should in certain ways, but I would get him back. Except she was right. He's still Louie, a bit of him at least. I struggle daily with the dichotomy of existing vs. living. Most days he's living, I tell myself. We remember the ways he has lived this past year, in between the gnarly and relentless treatments. He graduated lower school, friends helped us create an amazing garden we enjoyed all summer, received surprises from Matt Groening (and others) and got to know some incredible artists from The Simpsons, painted with a rhino, had near weekly visits from the Kona Ice truck over the summer, a Lego shopping spree and some sightseeing in NYC, a beach vacation, a new kitty, participated in two fundraisers for cancer research, ping pong, archery, pet a penguin, had his picture hung up at his favorite coin shop, met the Wild Kratts, trips to Chicago, surprised with a signed Kidrobot, had a party to celebrate a year of fortitude, a Valentine's Day scavenger hunt and deliveries of balloons, flowers, dinners, gift cards, Legos, paper cranes, good luck charms, books, Kidrobots, cakes, cards, texts, emails, connections, etc...and every meaningful moment we have together. The generosity of some has been incredible. The continued inclusion of some has been so motivating, we look past the exclusions that sting. Oh, and he turned 11. And he woke up everyday. Living in between the existing.

My life begins when he awakens. During his naps I'm absolutely lost. I try to imagine the house, this life, without him and I just can't. I cannot. So we believe that one of these things we are doing will work. "A miracle is what seems impossible but happens anyway." This is a favorite quote from a frequently watched movie. Louie says the word 'miracle' is overused. "Like what I have. People have got through it before and so will I. It won't be a miracle". It's bewildering how I can feel so lucky and unlucky all at once.

My favorite moment in New York was the last night. The three of us went to dinner; talked and laughed and over-ordered. Louie had sorbet. Everything felt light. We walked back to the hotel arm in arm.

* Title from Neil Young song

The Great Loudini

World Cancer Day and Louie's last day of radiation. A bell awaits to celebrate the milestone, Louie didn't ring it. We've been down this path before. 16 months ago he finished 30 sessions over six weeks and it was all balloons and back slapping. This time, after 30 sessions in three weeks (yes, twice a day), it's a little more subdued, a bit gloomy even. Louie's relieved, absolutely. Happy to be past it, thrilled. But, it feels like another day. Snapping his head onto a table, unable to move for 40 to 60 minutes each session required incredible composure, calm and guts. To quote Louie "What choice do I have?". Radiation is done at an adult cancer hospital, the amalgam of age and stature can be overwhelming. I have a different outlook on what a long, accomplished life looks like. My mom was 59. At the time I thought that was young, I was young. And as much as I want her back I realize she was a whole person - raised a family, was a part of the community and traveled the world. I see age and experience differently. I feel so fortunate for all that time with her.

Louie's regimen of anti-everything (nausea, inflammatory, seizure) and vitamins (fish oil, turmeric, etc..) is a pharmaceuticals dream. He refers to himself as the Great Loudini, the pills miraculously disappear, he is willing to do anything. All at once I feel completely selfish (for putting him through this) and selfless (for giving him all of me). Contradictory emotions.

Moonshot. Could that sound any less achievable? Happy to see pediatric cancer made the list at a minimum. I dream of promising a billion to whomever figures it all out (that's where our powerball winnings were going). So much love for those that dedicate their lives to curing cancer.

In the meantime, we are ready to hibernate a bit and recoup. And I'm consumed with contentment to sit on the floor and dig for that exact Lego piece as long as we possibly can.

Dear Louie.

4 December 2015

Dear Louie,

“Can our generation cure disease so you live much longer & healthier lives?”

That is the consuming question. Fragmented efforts, misguided intentions (who gains from a cure?), ambiguous fiscal directives (where does the money go?), misaligned motives. How do we funnel funds for results?

The cancer coating your brain and spine has nothing to do with an unhealthy childhood or missed opportunities. Just bad luck. There is no known cure; there are some innovative ideas, only to be leveraged if/when using the same drugs in different ways doesn’t work. Many organizations make efforts to ease this time, bring a smile to your face, allow you to feel normal. If that money went to research I may not be typing this. I will own bringing a smile to your face. A lip sync contest should do it. Or a cute cat video. Please tilt the money to research.

What is our aim? The biggest what? The newest which? The most of those? Material acquisitions are tangible proof of our accomplishments. Because an intimate knowledge of them isn’t reward enough. Live moderately. Never obsess over what you have or don't. Spend that energy on doing. On ideas or volunteering or getting to know someone.

What if the billions spent on smoking was spent on curing disease? Furthering education? Eradicating hunger? That can go light-years further than Facebook shares. We can move mountains if we can out-wit tobacco.

Expand your thinking; our biased views of the world create these pillars of strong willed ignorance. Subscribe to contrarianism for the sake of learning more and accepting more. Believe in your own god, or not. Marry who you love. Let color or weight be the last thing you notice. Morality is arbitrary and subjective but we all know when we do something good. It makes your heart whole. Share your knowledge not so we know how smart you are but for the movement of others. Invest in experiences. Make an imprint. Save for the unexpected. Be a conservationalist.

With all my energy I just want you to be healthy, cancer free and have the opportunity to unlock your gifts.

Creativity, accomplishment, hustle, impact, ideas, love, fun, acceptance, healthy living (save for occasional indulgences…see fun)…..let those things fulfill you. Not acquisitions. I don’t always live like this, but I strive everyday to get closer. And each day I have you, will be the best day.

I love you. Mama

P.S.  Mark & Priscilla…consider Louie when you allocate the first billion. Leptomeningeal Metastases from Medulloblastoma. And thank you. May this influence generations to give more than we take and share more than we acquire.