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The TBE Blog

A year ago my baby lay in Children’s Hospital NICU fighting for life. His lymphatic system leaks—no one understands the cause nor how it stops but they say that sometimes it does.

Day 10: Henry lies with breathing tubes in his nose, catheters draining his lung and a IV line ‘feeding’ him. Rabbi Joel says blessings over his tiny frame – and tells me he’s seen other terrible scenarios that later turn out with the little boy now running around temple. I don’t really believe him and I am completely powerless.

Day 20: My husband and I swap shifts so one of us is always at home with our three healthy, beautiful, vibrant children –  making tea parties in the sunshine, reading bedtime stories and cherishing the day – while one of us is with their brother, willing him to live. Rabbi Joel says that TBE’s Caring Community would like to bring meals—I say with my chin high that we are all set. After all, I run the yoga studio that cares for others—we are not the people who need charity. He says, “Justine, why don’t you try just saying yes.” I shrug, “Sure, just Sundays.”

Day 30: A lady I don’t know comes to the door with a meal, salad and colorful toffee apple. She asked after the baby and I reluctantly shared there’s no change. I am uncomfortable. Also, we don’t do dessert after dinner in our house. Sweets are for special occasions.

Day 60: Henry is so invaded by tubes that it takes two nurses to move him onto my chest. Every day I hold him skin to skin on my chest – singing songs from my childhood and describing the moon, Beethoven, weddings, trees… things it seems he shall never see. Rabbi Joel and I talk about the Buddhist principle that ‘life is suffering.’ He says, “Jews agree that the world is broken—it’s just we are pissed off about it. So we repair the world, build schools and hospitals, Tikkun Olam.” We talk about prayer—Rabbi Joel is a super smart guy.

Day 70: Every Sunday now, the kids ask with bright eyes if it is a TBE dinner – meaning some loving soul will show up with a meal and a completely over the top dessert! They are excited for what is always a beautiful and different dinner and I cherish the ability to just eat and relax with my kids. It is a hugely meaningful moment for us and made possible only through the kindness of people I don’t even know.

Day 100: The leaking stops.

One year later, Rabbi Joel and Cantor Jodi sing at Henry’s naming. My boy and I walk in the forest and look at the trees and listen to Beethoven. I don’t really understand how it is possible to survive what he did and emerge the delightful, loving and trusting child he is. Henry is the little boy who comes to temple. I am back on my yoga mat and I am not powerless—I am powerful beyond measure. I understand now that in tracing the line between helpless and hopeless, community is everything. We have dessert most nights now—because the day itself is a special occasion.

I love TBE and those kind souls who cooked for us all those Sunday evenings made more of an impact that they can ever know.