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.

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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.

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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.

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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.

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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.

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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.

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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.