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.
* Title inspired by Annie's Song by John Denver