I dreamed about my grandson Noah two days before he was born. Some might say I have lived in Santa Fe too long. But the connection was visceral. It began before he was born and continues to this day.
We knew there was a strong possibility that Noah would have a rare malformation of his brain. It had shown up in a routine ultrasound. But they can be wrong, can’t they? I met Noah minutes after he was born. He looked perfect. But we knew that the “10 fingers and 10 toes” adage didn’t matter. His fingers and toes weren’t the issue; his brain was. The diagnosis of agenesis of the corpus callosum was confirmed a few days later. The bundle of nerves connecting the right and left hemispheres of his brain was missing.
A short time later, Julie called, saying, “I don’t think he can see.” A visit to the ophthalmologist confirmed that Noah’s optic nerve was too short and that his vision would be severely compromised, if he were ever to see at all.
We all wonder how we might respond if we are faced with the unthinkable: a child born with one of those scary conditions that get pushed to the back of every expectant parent’s and grandparent’s mind. Of course, once faced with the reality, the unthinkable becomes utterly thinkable and not so very terrifying. The earth spins slightly differently on its axis, everything is somewhat off-kilter, and the lens through which you view the world is forever changed; but you can still put one foot in front of the other—still breathe one breath at a time.
As Noah’s grandmother, I not only had to cope with the reality of Noah’s condition, I had to watch my daughter and her husband do the same. The one thing a mother wants to do more than anything else—protect her child from pain—I could not do for my child and she could not do for hers.
But I also witnessed the courage and strength and love that Noah’s parents displayed. I watched as Julie lined up doctors and therapists and social workers. She and David were fully and adamantly committed, from the moment of Noah’s diagnosis, to make sure he had every opportunity to reach his full potential.
And I also witnessed my love for this child, which was beyond anything I had ever experienced. I didn’t have the vocabulary to talk about the depth of connection and feelings I had for Noah.
It turns out these special children are rare gifts. They are our teachers. We just have to pay attention. They help us understand what is really important in this life. They also bring the joy and pure love that all children bring. They will live their lives in the best way they can. Their parents laugh and get angry and go to work and go out to dinner and go shopping like all parents. These children may spend their days in physical therapy and occupational therapy and vision therapy and speech therapy—they may go to doctors at the same rate other children go to the playground—but they are still children.
Whenever Noah heard music—the Beatles, drumming, Free to Be You and Me—his face would light up. When Julie first took him to Happy Child music classes, she felt she needed to explain to the other mothers why Noah “just lay there.” While she didn’t want to make it a big deal, she knew people had questions. So she talked about Noah’s condition to these moms. Their support was enveloping.
It was in this class that I had one of my first “aha” moments. Julie was holding Noah in her lap while all the other children clapped and danced and sang “everyone is beautiful, it doesn’t matter your shape or size, everyone is beautiful when you’ve got love in your eyes.” I watched and cried a little and then realized—Noah is just Noah. Different, certainly, from these other children, but that’s okay, because everyone is different and yet all are just kids.
I learned to honor the child that he is, to recognize his tiny, but oh-so-precious gifts—a crooked little smile, a hint of a giggle, a pat on my cheek. I learned that even though a child can’t see, or sit up, or crawl, he can show you that he is soooooooo big. I learned to sit with the pain and sadness that still bubbles up and, at the same time, delight in the daffodils coming up through the snow.
This was the story I told until Noah was 2 ½. Now the story has another chapter.
Noah died peacefully and unexpectedly in his sleep on December 24, 2005.
We do not know why. We believe that life was simply too hard for him to continue. He waited until his parents adopted a little girl from China, his sister Ali. He had finished what he came to do: teach us about unconditional love and total acceptance, about expectations and tolerance, about living in the moment.
A young friend of mine who had met Noah briefly when he came to visit us in Santa Fe told me that she had never believed in angels until she met Noah. Another friend, who also met Noah only once, wrote, “his aura and what he stood for went to the core of my being and he brought out the best in everyone.”
I will never forget the hug I got from the doorman in our building—the place where I spent so much time with Noah when his parents needed a break or were traveling. Robert would see us coming and going, and somehow, in these brief encounters, a connection was made. When I told him Noah had died, there were tears in his eyes.
Our family’s loss is profound and our sadness is palpable. But we truly believe that Noah is struggling no more. The sadness is about us—the sense of peace is about him.
Our rabbi told me that to try to make sense of Noah’s death would be to trivialize it. He was right. It is not our work to understand why this happened. Our work is to continue Noah’s legacy of love.
To honor Noah’s memory, and to honor all children with special needs, Noah’s aunt came up with the idea of building a universally accessible playground in Noah’s hometown of Evanston, Ill. Working on Noah’s Playground for Everyone is a gratifying way to spend our energy as we slowly begin to heal.
As in his life, Noah continues to touch many people. The local congresswoman saw my daughter signing people up for a benefit at an athletic club. Tears came to her eyes as Julie explained the history of the playground. A young mother contacted us after seeing a poster about Noah’s Playground for Everyone. Her 7-year-old daughter had just won $500 at a raffle and wanted to donate the money to the playground. A Chicago family saw a news story about Noah and the playground on the local NBC station and sent a touching note and a crisp $5 bill. Again and again, people who never met Noah are reaching out to help.
Noah’s story is the story of every child with special needs. No, of course most don’t die. But they all touch a part of us we didn’t know was there. Every day that Noah was in our lives, and every day since, has been a gift. We don’t often get the opportunity to, as some Buddhist teachers tell us, put our heads in the mouth of the dragon—to face our deepest fears. Our journey with Noah has done that for us. As we build Noah’s Playground for Everyone with our family, friends, Noah’s caregivers, people from the community and strangers who have heard our story, we revel in the spirit of this amazing child, which remains strongly present, even though his physical being has left us.
NANCY MEYER, ’70, lives in Santa Fe, N.M.
