January 31st - One Year. Seth Speech at West Side Institutional Synagogue
Thank you so much Rabbi Strulowitz and everyone here at the West Side Institutional for this opportunity and for everything that you have done for our family, my mom, my sister and hindy and I.
It’s funny every so often I’ll run into someone who said they met my mom at WSIS, and they have a smirk about their discussion like she is pretty cool, and my brother in law Benj Joffe & sister Sarah had their ufruf here and heck Isaac and I had our first standup comedy show in this very building.
It was about 6 years ago when the shul was just taking off and Rabbi Einhorn had a ‘comedy shabbaton’ and wanted to get others involved, so the bangitout twins would be the Friday night act.
Obviously he was desperate.
Now we had never done anything like this, but we showed up, and I remember the skit, with internet dating just taking off, about a very frum girl and a very non frum guy meeting online and the whole joke was she kept saying how as a frum woman “she doesn’t wear pants”. And he as a frat guy, kept saying to his friends – you’re not gonna believe this “she doesn’t wear pants!” So anyways we bombed, but the shul has come a long way since those days… although obviously not that far since I am back speaking.
Before I do speak about Ayelet I figure I should talk about the parsha, Parshas Yisro the story of the 10 Commandments. And you might get distracted by why is it’s called Yisro, the mere supporting actor, the father in law, when the parsha should be called, as Hollywood called it…the Ten Commandments? Or at least Moses? Prince of Egypt?
And if you read more about Yisro, he seems even worse, like a fare whether fan at best, saying he only joined the bandwagon of the Jews once he heard the awesome news of the Jews winning the Amalek war, and splitting the sea. What kinda mentor is that that he deserves a parsha with the 10 commandments? Seems really odd.
So there are a ton of reasons given, but I thought I’d share a few that I thought were pretty relevant to my own story, the story of Ayelet. My little pint sized 14lb 2 year old daughter whose name no one could pronounce and like yisro had more than 7 nicknames.
For those who don’t know Ayelet, our first born daughter, she was born 2 months prematurely but she found her way and was like most babies on the west side she had cute outfits, the designer stroller, a nanny, tons of facebook pictures, she even made it down to visit WSIS a few times.
But after having some more serious symptoms, and countless doctors visits in every hospital in this city, we learned she had a rare genetic disease called dyskaratosis congenita that required a bone marrow transplant for survival. And worse there were no perfect donor matches in the system.
And I remember we found out on Thursday and that shabbos Hindy sending me to go shul to shul that first shabbos telling each rabbi to make an announcement that we need to find a bone marrow donor – there was a drive at the YU seforim sale, almost this exact time 2 years ago. And I actually wasn’t sure how the community would respond to this serious topic. I barely understood and comprehended the news myself and I dreaded making it public.
And this is precisely what was the first amazement of my daughter’s tragic story, like Yisro, as soon as you heard the news, you, the upper west side somehow responded with an unexpected and overwhelming amount of immediate action of love. You heard the news, Like Yisro, and somehow were driven to get on board. To join our fight.
And when Yisro saw Moshe in pain trying to do it all himself, he realized this wont work.
And you saw us trying to find a match and take care of Ayelet and being in hospitals all alone – the upper west side community, who people trash as transient or cold realized we couldn’t do it alone either, this wont work – and the meals and support poured in.
The only way we would be able to get to the transplant, the only way for the Jews to get Sinai is if other people got on board and helped. Yisro realized this, and so did our community and both devised a system to get others involved.
One of the biggest drives was on Purim at this shul, funded by this shul’s amazing members alone. And through this you gave us hope. A unity, like at Mount Sinai, swept over our community like never before.
Your holy rabbi even setup a drive in far off San Francisco transforming his Shul’s Purim Seudah into a drive, and for that I am forever grateful.
And through these drives and donations and celebrity tweets from 50Cent and Rihanna we were able to find a match for Ayelet to do the transplant. It wasn’t perfect but Cincinnati Children’s hospital, the place we dedicated to do the transplant was willing to do it. And at that point we started a blog to keep our friends and family updated on Ayelet’s progress from the mountain, eh flatlands, of Ohio.
And like the Jews, we would have to prepare for a revelation of our own. Because transplants require serious preparation. They needed to wipe out Ayelet’s current broken immune system and replace it with the seeds of the donors and hoped they’d grow. But to do that there would be a period of isolation because for a few months she would not have any working immune system. Serious risk and serious preparation. Like the Jews at Sinai we were afraid, had no idea what to expect but knew it would be intense.
And Ayelet our little girl, would not be able to be in contact with anyone. Like the Mount Sinai, she could not be touched, she’d have to go it alone. Even our clothing like the Jews of Sinai would have to be sterilized daily.
And oddly the more Ayelet was isolated, we were isolated, going up the mountain alone, the more and more of thousands of people online and beyond wanted to be close to her.
You came to the foot of the mountain.
With every post of her picture on the blog of her progress, dozens of strangers began following her ups and downs. Thousands of emails and prayers and toys and clothing were showing up in our hospital room. We felt as if you were in the room with us. Because you were.
Rabbi Einhorn would email me every so often during the transplant - and when Ayelet got worse, he sent a note asking me if he could fly to Cincinnati to see and visit us. And I thought he was joking and I responded by reminding him you know Ayelet is in isolation, so there is no point. It’s not worth it. And he responded like Yisro, like the Jews at Sinai so perfectly ….“So I’ll sit in the waiting room.” What nation is like this? To be a holy nation we need to show up as much as we can, for those who can’t go it alone. Like Yisro, the Jewish community showing up, is how we were able to make it as far as we did.
And the Thunder and Lightening of the transplant happened and somehow initially Ayelet’s transplant worked and we received the amazing news and were able to leave the hospital! A miracle, a revelation, leaving the most amazing experience, the high of everyone behind us, supporting us.
But sadly upon returning from the high, a few weeks later Ayelet contracted a lung infection she could not fight without a full immune system and sadly after fighting and praying, she did not make it back down the mountain fully.
And we were left coming down alone, broken. Like the Luchos, Moshe comes down from the mountain to find the pain the reality of life, a disaster, and things for all of us came smashing down, this time 1 year ago.
It’s sad, but there is another side to this.
Because throughout the Thunder and the lightening Ayelet the 2 yr old girl in the eye of the storm, somehow was not afraid.
She would find fun in her hospital hell. She could not talk or walk but she somehow was so clear on what she wanted, her Poupko personality, and paid not a single moment to the pain, the pressure, the painful medicines and just enjoyed unraveling straws and medicine bottle stickers. You could spend a day talking and retalking with doctors, but as soon as you would see Ayelet happily playing and being in the moment you too would lose your fear, your neurosis, and would focus on what matters most. Life.
Ayelet did not know anything about death, she only knew life, and through the pain, to be in it, to be in the moment.
To unravel straws and peel stickers, to snuggle with her blankie, to be a kid – We understood and she gave us reason to fight for life, to have no fear. So broken so small, but was somehow able to give us everything. One look at her and you knew everything.
And I think about the Ten Commandments about the last commandment, Don’t Covet, and honestly I, not for a second would trade the time I had in the hospital for anything in this world. Because Ayelet for those months gave me purpose, she gave me a role, she gave all of us a reason to fight – but most importantly for the first time in my life, I wasn’t sitting on the sideline observing, writing a top tens or skits in my head about something, I was in it, I realized I was not just showing up but I was Showing Up, she made me full, she made me present. Because Ayelet was all about life, and when you looked at her, you understood the importance of it.
Yisro and Ayelet both showed us to focus on what matters most.
To show up, to be present through wars, and miracles, through whatever life gives us. Because it’s not all highs, but to remember the inspiration the revelation the North Star, this life affirmation she & the torah gave us all.
And this is the most amazing thing about Judaism – because we are all here living off the inspiration of one moment 5000 years ago that ended literally in a mess. After the high of the revelation, the Jews sinned and Moses smashes the luchos. Disaster.
But the torah is not in heaven, it’s not all a high, there are broken pieces that we need to somehow try and make whole. One moment of inspiration, can change lives for generations to come.
And the amazing thing is, the Jews in the dessert don’t carry the perfect luchos, - The Ark of the covenant, carries what? The broken pieces, it is what helped guide them in the dessert, into life. Because Judaism knows in order to live a real life you need to carry with you the broken pieces, the real pieces, to remember that real life, real Judaism doesn’t end when it breaks, it begins.
And we need to carry Ayelet, our little broken girl with us and her gift. To be in life, be present and choose it, fight for it.
And actually believe, like I do, that we too experienced a modern revelation. Ayelet’s story. Momentum of a community, a miracle and sadly a calamity, a high and a low - but united throughout. The thousands of swabs and the thousands of tears all for one girl who was not willing to back down.
I would even argue there were more than 600,000 people through facebook and social media that were affected by Ayelet’s story. Almost 60 lives saved.
So the Yisros, the people who held us up, who got others involved, deserve the credit for this revelation.
Ayelet who would love to say how big is Ayelet, and she would hold up her hands “so big”, like she was holding up the torah, lifting us up, and show us, like moshe, like rocky, like we won the SuperBowl, to have no fear.
Mi C’amcha Yisroel? Who is like The Nation of Ayelet? It’s this naase vnishma, the doing and continuing to do, to hold up our kids, our Ayelets – and realize we’ve got more work to do.
And so, for Ayelet, let’s get busy living.