Jewish Federation of NA- Be The Change Young Leadership Conference Dallas
Good afternoon everyone, we’re so honored to be with you today. And thank you to the leadership of JFNA for giving us the opportunity share our story with you about our daughter Ayelet, featured here in a Dallas style cowboy hat.
So, let me tell you a little bit about who we are.
My name is Hindy Poupko and this is my husband, Seth Galena. We met, like all good Jewish couples, on the upper west side, and still live there today.
We’ve each spoke about our story in public before, but never actually together and I think you’ll see how different we each are but that is was precisely those differences that allowed us to be there for each other these past few years.
So who is Ayelet?
A few years ago I became pregnant with my first child. Everything about the pregnancy was normal until I didn’t feel her kicking one day at the beginning of my eighth month. We rushed to the hospital and Ayelet was delivered a few hours later at the shockingly low birth rate of 2lbs.
We named her Ayelet after Seth’s father whose name was Hershel, which like Ayelet means “Deer.” She spent 6 weeks in the NICU growing and getting stronger and we were overjoyed to bring her home when she reached 4lbs.
For the first year of her life she was like every other UWS kid and we did everything right, the designer stroller, designer clothing, and she even made it to the Hamptons.
While I was dressing Ayelet like an American Girl doll, Seth was dressing her up in his own unusual way…and we started posting insane pictures of her on Facebook which highlighted her incredibly small size. This was Ayelet’ first debut into the social media space.
But sadly at about a year old, all sorts of symptoms started arising, she stopped growing, not really eating, and we began our search for answers - going to every hospital in New York City - it became a full time quest, from specialist to specialist experts analyzing Ayelet – trying to pronounce her name, the trick I use, I Don’t Say it, I YELL IT - first it was an allergy, then it was a stomach thing, its an immune thing.
And sadly our worst fears were realized when a doctor at CHOP in Philadelphia tested her for a genetic disease so rare that she had a 1 in 4 million chance of having it. And they called us saying - she tested positive.
Things within an instant, within the blink of an eye, got very serious.
We became Ayelets, deers, caught in headlights listening to the doctors heavy words.
And what we learned was Ayelet was diagnosed with a disease called Dykaratosis Congenita that would require among other things, bone marrow transplant for survival. Her immune system would fail without a bone marrow transplant. And worse, when we checked the registry, there was no perfect matches in the system.
So herein lies the challenge: We as first time parents hearing this heartbreaking news, had a choice, we could sit hopeless and in sadness or we could do everything in our power to fight for Ayelet. To find a match, to give her a chance at this life. But to put ourselves out there fully, about a serious topic we ourselves barely understood, and now needed the help, the goodwill, of others.
What would you do?
And so right then and there we decided we’d do everything we could - I got online publicizing that night, we need to find a bone marrow match, and I had a Jewish humor website called bangitout.com and I used that to get the the word out, and we setup a facebook page, a gift of life page, - and we walked that weekend from Synagogue to Synagogue on the Upper West Side telling them the urgency of our situation, and beyond and to institutions, YU, AMIT, Hadassah the Federation. We used all the resources we could think of to find Ayelet a donor, someone who could help her, help us. Our friends even setup a swabbing booth at their wedding. We would set the tone, we would put ourselves out there and hope, pray that miraculously others would follow.
I will never forget walking into the Yeshiva University book sale and seeing Ayelet’s picture on a stranger’s phone. He was showing it to his daughter and explaining why he was going to the Gift of Life Table.
On the one hand, it was devastating because it made it all so real, but on the other hand, it was incredibly powerful and uplifting to see someone care about our daughter in that way. This was our first taste of what our community was truly capable of and how they would continue to partner with us to change the narrative.
What happened over the course of next few months, since we alerted the community to Ayelet’s story, was truly awe inspiring. That first facebook post about the local Gift of Life Drive in New York spurred our community into action. Hundreds of drives were held in communities across the country in search of a match for a little girl they never met.
Thanks to those drives, we’ve raise over $300,000 for Gift of Life and found over 60 matches for people in need of a transplant.
Word spread so fast we got the media and celebrities, Rihanna, 50Cent Leighton Meester tweeting for a match for Ayelet.
In addition to the celebrity attention, the traditional media got involved as well and we did countless interviews on local and national TV stations.
Till these days were not quite sure why so many people were fascinated with Ayelet’s story. There are sadly many sick children out there. I think that certainly part of it was her dashing good looks, her smile, her innocence, that lit a spark that we did not know existed in our friends our community and beyond.
I think people were also drawn to the story because they sensed that there was a role for them to play- a way for them to change the outcome.
Even though everyone did the right thing, we never did find a perfect match for Ayelet so we moved our lives to Cincinnati Children’s hospital and moved forward with an imperfect match b/c we simply ran out of options…
And when we got to Cincinnati our worlds became the transplant, the process, we’d have to learn how to live in a hospital 24 hours a day, and divide the responsibilities because there were so many components to her disease. And Hindy would take control, become a master practitioner with doctors, the rounds, the medicines, managing Ayelet care for the possible 6 months living in a hospital - and I somehow would fill in the downtime, managing Ayelet’s entertainment, in isolation. Where she could have no friends, or many visitors.
But what we forgot was through all this, Ayelet was actually growing up, becoming a real personality before our eyes - one that I can only describe as a perfect combination of her mom’s determination and her dad’s wacky creativity.
She was so small, but mesmerizing to every doctor or nurse who came in contact with her, her smile, her personality, her creativity.
I’ll give you an example, Ayelet was not able to talk or walk but her personality shown through. So tough like her mom, so determined to do what she wanted, and so clear without words. Eh, pass me this, Eh, get me that. Her Poupko personality came through, with each grunt you knew what she wanted or not wanted. Hindy and I still communicate in that non-verbal Ayelet way.
And Hindy would dress her to the tee, making her literally the little Diva of the hospital. Headbands and couture clothing – Hindy was determined she’d be the best dressed girl in the transplant floor. Ah, the Jewish mother.
And she was so creative – she would find ways to amuse herself, with unusual things in her hospital hell. The medical bottles, and sadly she had so many medicines, and their sticker labels - Peeling them off for hours.
And the straws that came with our dinners she so would love to unwrap. Her imagination, her sense of creativity was so clear over the course of those months in isolation. She created a world with nothing - so so many straws hours of fun where there was none. Even today I still steal straws from 7/11 for her - to remind me of what real creativity is.
And we started a blog that originally was just about what is going on medically, plans on how the transplant would work. Important information to rebuild her immune system.
Heavy stuff, but as we included updates about the real situation of living in a hospital as observant Jews, the humor of it all, and the pain and hardships, the way Ayelet was growing up and the way were surviving with the other parents in this very dark place, the boston accent family, the Chassidic family, the mormon family all sharing one family room, one fridgerator - and people became tuning in - like we could have never imagined. It became thrilling, with every post tons of comments and hopes of a positive outcome. And every comment of support helped, and showed us again, like during the drives, that we were not alone.
And so the blog became half medical and then half humorous. What Ayelet was up to. What we were up to. serious and the not so serious Our down time, our hopes and our menus for Friday night Shabbat meals in the hospital. And the blog leadership began to grow, over 60,000 unique visitors who kept coming back- Seth started to refer to them as “Ayelet Nation.”
We also started to notice a strange trend. Every time we would write about one of Ayelet’s latest obsessions, be it stickers or straws, we would receive packages in the mail
from people we never heard of, sending us these items.
Be it stickers…
We got some crazy things in the mail but the nicest ones were from other people’s kids. One family that we didn’t know, had their kid make Ayelet an honorary member of their Brownie Troop.
We loved this stuff. It made us feel like we weren’t alone even though we spend roughly 7 months in a hospital with Ayelet confined to her room to avoid germs.
Even though she stayed in the same room for months on end, as Seth said, she had an incredible ability to turn it into the most interesting play room in the world- where syringes became the most coveted of prizes.
People wanted to be involved in her story and not just in a passive way. Some people have incorrectly called the readership of Aylet’s blog voyeuristic but it was anything but. These were real people doing real thing. Trying to change the story. They didnt give up when we didnt find a perfect match, they stayed with us and found ways to be active players in the story.
When things got serious, they prayed, they did extra things in the merit of Ayelet like baking challah or giving charity.
The crazy thing is, the transplant worked. We even had a parade leaving the hospital after six months of isolation, hundreds of blog posts later, hoping to never return.
And there were a few fevers and a few returns but we thought we were home free.
But sadly – in the hardest and darkest times of our lives, a few weeks later later there was a glitch in the treatment, and with Ayelet’s weak immune system not fully functioning yet, she contracted a small lung infection, and she was so fragile her body she tried so so hard. And sadly after days of critical care in the ICU, after trying everything we could do, the doctors could do, - with thousands of Ayelet Nation facebook and bloggers following and by our side, setting up prayer groups and baking challahs and saying tehillim, Ayelet could not fight anymore and our world came shockingly crashing down, she passed away, January 31st 2012. Just over a year ago.
Very Dark. Very Hard.
We did everything we could, trying so hard, and there are no answers.
But there is another side to this, because the communities we created from the drives to the blog, our Ayelet Nation as we called them, they had answers.
And the thousands literally that attended her funeral and poured on to 86th St. and streamed through our shiva house knew exactly what to do. So many people would come through the shiva and start like so many of the blog comments started - “you dont know me but”…. “I never met you but” … your daughter has changed my life/inspired me to be better”.
They would follow our brave 2-year-old Ayelet’s lead, who took her two years on this earth and changed our universe forever.
Every blog post was a testament to the larger than life soul Ayelet was. And she inspired so many of our friends to be better, and even crazier - so many strangers.
Ask yourself, as I do, do you know anyone who in their lifetime has saved 60 lives?
And the truth to this is - Life, Ayelet was only about life.
So alive and knew nothing of death or her transplant or her disease, which were all incidental to her real story, she only knew what was worth living for, fighting for, smiling for - she inspired us to be better parents, better friends and a better community. Ayelet’s ability of finding fun reminds us that real life is a gift, a gift, with ups and downs and tears and laughs and complexities. But it’s our job to live it. And we need to focus on what matters most, to remember to be present, to be in it. To pivot to what is important. To Live.
To unpeel the wrappers like Ayelet did of our lives, and uncover what we are really made of. Who we really are. This was her gift to us to carry and hold on to. To find the real us and live up to our potential. Each and everyone of us, to find our Ayelet, the little spark in all of us, the little neshama, and fight for it.
One of the hardest things about losing a child is the feeling that the world will never know them. We know that the world knew Ayelet and thanks to Ayelet nation, they continue to remember her.
There have been countless projects in her memory, all initiated by members of Ayelet Nation- people trying, even in the aftermath of unthinkable tragedy- to change the story- so Ayelet would always be more than a child who succombed to a terrible illness. There was a playground in Israel, a playroom in the Ronald McDonald house, a Torah dedication, and an art exhibit in the Cincinnati Children’s Hospital has been created in her honor.
We had a Gala that raised over a quarter million dollars for the Gift of Life where we awarded the “Ayelet Galena Courage Award” to kids fighting terrible illnesses. Ayelet Nation continues to step up and show us Ayelet lives on. Till this day we continue to receive notices about matches that have been made from drives run in search of Ayelet’s match. She lives on.
In addition to the thousands of strangers who came to the funeral and visited us during shiva, we received thousands and thousands of condolence cards, including cards from kids. .
One of the nicest condolence cards we got was from our very own president Obama. Seth and I were invited to a reception for the NY Giants and as he was walking by I stuck my hand out and said, President Obama, thank you so much for the condolence letter you wrote us when we lost our daughter. He stopped in his tracks, gave me a huge bear hug that lifted me off the ground and then looked us in the eye and said, be strong and keep carrying on. The only problem was Seth forget to take off his red ray bans for the photo….
Some of you might be thinking, how is this a good story? In some ways, it can be viewed as a story of failure. We tried to find her a match and failed and we tried to keep her alive and despite the stickers and the prayers, we couldnt do that either.
But to think about the story that way is to really miss the point. Despite being beaten down time and again, our community stood with us. At every juncture they found a way to effect change. Be it by saving countless lives through drives run for Ayelet. by ensuring that we never felt alone in hospital, and by continuing to keep her memory alive. This is what change and leadership is really about. Its not waiting for the perfect ending to a story but realizing that while there are some thing that will always be out of control, we need to take control of what we can and try to effect change wherever we can.
The change happened with each Facebook book post and each delivery of stickers in the mail. Regular people who decided that they were going to do something to change this story. And they did. What could have just been a tragic story about a two year old dying from a terrible illness is now also a story about the power of community. The people around us chose to change the narrative.
Its also a story about what it means to be part of a Jewish community. There were many Jews who I would never think to hang out with who showed up for us and stepped up to the plate.
There was the chasidish woman in Brooklyn who brought us homemade challah and cakes every Friday for the first few months after shiva, the dance teacher who made tank tops with Ayelet’s name on it, the Israeli stranger who named her child after Ayelet and the chabad rabbis on the upper west side who gave us a free townhouse to live in for a few months while we renovated our apartment after the fire. It made me wonder if I would do the same for them. ..
And so fast forward a few months later - where are we now?
I think one other thing we learned from Ayelet Nation is how to act in times of tragedy. How to respond when things get hard. Dark. Tough.
Last December, when reading about horrifying Sandy Hook tragedy, I came across the eulogy of little Noah Pozner the youngest victim of Sandy Hook and his mother’s description of his love of tacos - which bittersweetly reminded me of another little kids love, - Ayelet’s unusual love of stickers and straws. They just sounded similar. Two Jewish American kids, so innocent, taken too soon.
It was each of their essences, their passions, their way of showing us that life is the most precious, the most rewarding, if you follow those things you love. Whether it’s Tacos, or Straws, or Stickers.
To savor it, to taste it, like the Taco’s Noah Pozner loved so dearly.
And I asked myself, now on the flip side, what I could do to help just a little bit? Anything, do something.
When it comes to tragedy the only thing that matters is how we respond.
Like so many did for for our daughter, Ayelet. Some how I found myself staring at Noah’s picture and rereading his story. Like my own. It was time to act.
And so for Sandyhook, for the Pozners, for Ayelet and for myself, I stayed late one day at work, a digital advertising agency VML, and I setup a simple website. a virtual taco factory for those touched by the tragedy to make a taco, something Noah would have liked, and all you’d have to do is add your special ingredient to it and hit tweet. Cheese, Corn or even World Peace.
As of last week this little project called “Tacos For Noah” had over 8000 taco tributes made for this little 6 year old who wanted to be a taco factory worker so there would always be tacos for the world for others. Instant “comfort food for those who lost and for those who want to share, to remember the life in a positive way.
And honestly the only advice we can give is new experiences will come up, some you choose some you dont, some are yours and some are those of strangers. And it’s easy to just shrug it off, to be apathetic….but in those moments, I ask to remember our story. Remember Ayelet.
The only thing Ayelet & Noah would say to do, is when there is a moment of inspiration or idea remember this, like Ayelet and Noah, like I do: “you don’t know how much you can accomplish, you dont know how many people you can really inspire – you don’t know how truly special you are. Until you try.
So for Ayelet, For Noah, let’s give it a try.