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Emmet's Playground is being built in the memory of Emmet Samuel Manheim, a 10-year old boy who lost his life to aplastic anemia on September 25, 2019. Emmet loved life and things that went fast, like slides, roller coasters, and skiing. We are building a playground to spread the joy that Emmet embodied and inspired in his too-short life. Help us!
12/28/19
In so many ways, we are glad to leave the horror of 2019 behind us. It was a year filled with pain we couldn’t have imagined.
Yet, I’m sad to leave it. 2019 was the last year Emmet took a breath, and moving onto a new year somehow feels like a betrayal to him. In 2019, I still had everything I had ever dreamed of.
The year was a tightrope. We rang it in with the understanding that Emmet would need a bone marrow transplant but with hope and confidence that by 2020, he would be on the mend. We began walking that tightrope in earnest when we marched through the doors of Boston Children’s Hospital on April 4. From that moment, our vision became laser focused on simply putting one foot in front of the other, trying desperately to keep our balance. The world we knew melted away: no synagogue meetings or grading essays for me, no weekly disc golf outings or poker nights for Jeff. Our universe became the four walls of Emmet’s hospital room, and our interests winnowed down to neutrophil counts and the daily morning blood test results that would pop on on our phones, revealing news that would dictate the emotional course of our day. If the numbers were up, we could breathe. If they went down, we would panic. We lived in a state of perpetual fear that the smallest misstep would result in catastrophe, so we asked hundreds of questions and read dozens of articles and monitored every item of food, drink, and drug that Emmet consumed. We stayed awake and alert for 20 hours a day, our eyes fastened on the end of our tightrope. We walked but never seemed to get any closer; the distance kept extending like a cruel optical illusion.
While we were struggling to stay on that rope for dear life, you—our family and friends—were quietly weaving the net that lay below us. We could see the net and it comforted us, allowing us to keep our focus on Emmet’s care. You took in our mail and checked on our house. You sent us Grubhub and Seamless and UberEats and restaurant gift cards to keep us nourished. I don't think we paid for one meal while we were in Boston. You created prayer circles and sent us books to make Emmet laugh or to distract us. You sent Legos and games and gag gifts, homemade cards and pictures, and funny T-shirts, giving us a reason to smile as we inched forward on our tightrope. You visited us in Boston. You gave your money to charities that promoted causes we had come to need desperately—the Ronald McDonald House and Be the Match. You called and texted and left messages, even when I never called back. We were planning a big party to thank all of you for everything you did for us, as soon as we could. The three of us even named the party “MoPaFaMemFo” for all the holidays we missed while we were in the hospital. It would be a big barbecue and we would have it as soon as we were on the other side of our treacherous walk.
But on September 25, the rope snapped and Jeff and I found ourselves hurtling helplessly toward the ground, our equilibrium violently disrupted with the loss of Emmet.
But your net caught us.
It caught us as you showed up by the hundreds at our door the week after Emmet died, and for many weeks after that. It caught us as you brought meals every day for months or came to walk with me despite your own busy schedules. (It counts even if I cancelled our walk!) It caught us when you left bags of groceries on our front stoop or invited us to Shabbat dinner or a massage or a special event that you knew we would enjoy. It caught us as we received your condolence cards with special notes of what Emmet meant to you, or the books with personal notes that you sent us to help us with the grieving process. It caught us as we raise money that you have so generously given us to build a playground in Emmet’s memory. Every single kindness and act of love you have shown us is a strand of this net that has cradled Jeff and me over the past three months.
We are not okay and we will never be okay. We still whisper to each other daily how much we miss him. We still look at each other in shock, wondering how this could have happened. We still analyze relentlessly that final month and those final moments with him, thinking about what we might have done or said differently had we known how this was going to end. We have probably not fully processed that this is real.
But we are functioning and moving forward and it is only because of our family, our friends, our community, our support network. It is notable that the word “net” is the root of that word. I am starting back at work on January 6 and Jeff will return to his office. We have traveled and spend a lot of our time championing causes that are important to us and were important to Emmet, riding roller coasters and actively working to build the playground. We have not written many thank-you notes, but even if we did, they wouldn’t adequately express the gratitude that we have for our network. So this is that thank you note, in case I don’t get to all of them personally in the next six months.
We love you, we are grateful for you, and we wish you nothing but health and happiness in 2020.
xo Lisa and Jeff
Emmet made Hannah an origami bird the day she was discharged.
Emmet and Hannah
12/18/19
Sometimes you meet someone who feels like an old friend the minute you meet her.
That was Hannah. We became friends with Hannah and her dad, Paul, while we were at Boston Children's Hospital. Hannah would sit at the table outside her room and play card games with anyone who cared to stop by. She was the mayor of 6 West, and Emmet loved her immediately. She treated him like a friend, even though she was more than ten years older than he.
In May, Hannah was able to go home: her bone marrow transplant worked and it appeared her cancer was gone! Once she got home, she emailed me often to find out how Emmet was doing. She sent him little gifts that made him smile: a Simpsons T-shirt that became a favorite and a game called Mancala which we played every day. We planned to visit her once Emmet was out of the hospital; she lived outside of Albany and we would see her when we went to see big brother Josh in college. (Hannah was taking a semester off). Emmet and Hannah adored each other, and it hit her hard when he passed away.
We visited her dad last October while we traveled in upstate New York. He and his wife, Joanne, took us out for a drink. We didn't get to see Hannah because she was at the wedding of a friend, but she had made us a huge gift basket of snacks and treats for our road trip. That's how she was: thoughtful and generous, even while she faced her own tremendous battles.
Sadly, we found out today that her cancer had resurfaced its hideous head last July, fast and furious. They hadn't told us, because they didn't want to upset us. She died last night, holding her father's hand. We know that she and Emmet are playing a rocking game of Mancala, free from sickness and hospitals. We will never forget sweet Hannah.
Hannah asked that donations in her memory be directed to Emmet's Playground. We are so deeply moved by this. Hannah was a part of Emmet's life and will be an important part of the playground too.
Please consider joining Be the Match or Gift of Life, both part of the National Bone Marrow Registry. All it takes is a swab. If you are a match, you could save a life and give a desperate family the gift of hope.
Thank you.
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