The snow falls down like feathers from the sky-big, fat flakes that stick to everything they land on. It’s January and I think we are all happy to see a little snow. We had a storm at Thanksgiving, but not much after that. Living in the northeast, there doesn’t seem to be much point to the cold without the snow. We need something to do; we need something to play in and on, something to watch, something for kids to put maple syrup on.
I sit on my cozy, warm couch and watch the flakes fall. My third son’s birthday is tomorrow and I think back to that day. We didn’t get any snow that year either, not until the day he was born- the 13th of January.
Kelly was born at home after a long and exhausting labor. He just didn’t want to come out…or maybe it was that he couldn’t. I didn’t know it at the time, but my baby boy had Down syndrome. The weakness in his muscle tone made it difficult for him to assist in the birth. Typically, babies wiggle and move when they are being born. This, and the mother’s substantial effort, helps them move through the birth canal. Kelly wasn’t helping at all. Every ounce of his 8.5 pounds was pushed out by me.
By the time he entered the world, I was so spent I was barely paying attention to the excitement around me. My new baby was here! but all cared about was sleep. When he didn’t cry (again due to low muscle tone), I was actually relieved. “How nice that he’s being so calm about this whole thing,” my hormone-crazed mind actually thought. He just looked up at me silently. I was enchanted.
But I was the only one. The midwife immediately sprang into action and my husband started asking questions :”What’s going on?” “Is something wrong?” “Can we talk in the other room?”
They left me in my post-birth daze and discussed the possibility of Down syndrome. My husband recognized the characteristic features right away, but I was oblivious. They reentered the room and suggested we pack up and head to the hospital to get the baby checked. I was incredulous. Are you people nuts? I just passed a bowling ball and you want me to get dressed and sit in a car for 90 minutes? With my newborn baby? In the first snowstorm of the season?
My resistance was ignored and there was a flurry of activity. Before I fully registered what was happening, I was in a warm car, wincing with every bump in the road. My new baby was bundled in a car seat beside me. I laid my head back and fell into blissful sleep, unaware that my life would never be the same. Kelly had arrived and he would change everything.
When people find out that I have a son with Down syndrome, I often get the sad, sympathetic eyes and the obligatory, “I’m sorry.” They stumble over their words and try to think of something more to say, but all I hear is their fear and relief: “Wow, it’s too bad you have to deal with that. I am so very glad that’s not me.”
They don’t actually say this, of course, but I hear it anyway.
Well, I’m glad it’s me. I know how lucky I am.
It didn’t take us long to fall in love with our new baby, diagnosis and all. The facts were that he was absolutely adorable and the most content of all of my babies. Life soon fell into a lovely rhythm.
I did worry, though. I worried about my other kids. I worried about other people and what they thought.
One day when Kelly was a few months old, I took the oldest aside to explain about Kelly. I was a bit nervous about this. Luke was six at the time and already very intense, I didn’t know how he would react to the news I was about to share. I explained that Kelly was going to be a little different. He might take a bit longer to crawl and walk than his younger brother had and that things would go at Kelly’s own special pace. Luke just looked at me, looked adoringly at Kelly and simply said, “OK, Mama.” He walked away and went on playing.
I sat back, stunned. My six-year-old was absolutely right. It was ok. I had a beautiful new baby, and if I loved him purely for just being Kelly, things were really ok…fabulous, actually. I didn’t matter what anyone else thought. They didn’t know what I knew. They were not given my gift.
A couple of months later, I was talking with a new friend about Kelly. We were talking about how sweet he was when she spoke the line I will never forget: she sighed and said, “…but his future is so uncertain.”
I looked at her, astonished. This statement came from a woman whose son was demanding she buy him only girls clothes. Right at that very moment, he was skipping around the playground in bell-bottoms with hearts on the pockets, rhinestone barrettes in his long, brown hair and golden, sparkly shoes on his feet. And she was worried about my son’s uncertain future? I may have laughed out loud. If anyone’s future was predictable, it might be Kelly’s, but she helped me realize how ridiculous even that was. The future is uncertain for all of us. What a waste of time it is to spend even one precious second worrying about it!
Thing shifted for me on that day. Like a lens that suddenly plunks! into focus, I understood. Kelly would add to my life, but only if I allowed him to. I had to open up and be willing to reassess my definition of a “normal” life. I had to let go of what I thought things were supposed to look like and be like. My job was only to enjoy my life and my new baby. The rest was out of my hands. What I got in return was a delightful child, a rich, new perspective on life and sweet relief. Not a bad trade.
Fifteen years have passed since Kelly arrived and changed me. Today, he will get off of his school bus and ignore his mother (just as any self-respecting teenager would) and head straight for the backyard. He likes to sit alone under the pine trees and talk about his day. He needs to decompress and he likes to do it alone. He just sits there and talks to the air. How I envy that. With no inhibitions, he releases everything into the sky.
This is just another example of Kelly’s wise ways. I recently took all the kids on an adventure to the ocean. We needed an activity to pass the time on Christmas break. The kids loved the beach, but it was terribly cold that day. We couldn’t stay long. As everyone else raced back to the shelter of the car, I looked around for Kelly. There he was, on his knees, talking to the ocean. I had no choice but to wait for his monologue to finish, so, I, too, released some thoughts to the waves.
Kelly is my sage. When I get caught up in the unnecessary details of life, all I have to do is seek Kelly out for some wisdom. I’ll probably find him outside breathing the air or upstairs investigating whatever it is that has sparked his curiosity (my older kids have learned to hide their electronic devices.) He lives by his own set of rules, and as long as he’s not putting himself or anyone else around him in danger, I try to allow him to do just that.
When people feel sorry for Kelly or for our family because of the “burden” of him, I almost want to laugh at their ignorance. Don’t you people see?? He has it figured out! While most of us are running around trying to find ourselves or learning how to “get back to our true nature” (I just bought a book on this…), he’s never lost his! He lives free of his ego. He will never question his self-worth. He doesn’t care what you think about him or what he’s gonna be when he grows up. Can you imagine the freedom in that?
No, this is not a person to feel sorry for. This is a person to watch and learn from. This is a person who lives from his soul.
A few weeks ago, Kelly’s younger brothers had their Spiral Walk at school. This is one of the festivals offered in Waldorf education, the school that all of my children have attended. It is a ceremony of light offered during the darkest time of the year, the season of Advent.
In a darkened room, a path is made from pine boughs, crystals, and shells. One by one, the children walk through the spiral holding a candle supported by an apple candleholder. At the center of the spiral, they are greeted by an angel who lights their candle. The apple represents the nourishment that the earth gives us. The light of the candles invites us to be bright of thought and warm of heart. The children are drawn toward the light at the center of the spiral, which beautifully represents both an inward and outward journey from darkness to light. We remain silent during this celebration, allowing us to be as reverent as possible in the beauty and magic of the setting.
Well, as reverent as a bunch of 7-year-olds can be…
but Kelly teaches me once again.
None of my other children are ever happy about the Spiral Walk. Having to sit in silence, in the dark, for over an hour is not their idea of a good time. But Kelly has always loved it. It seems that something within him understands the deep meaning behind it. He sits quietly, legs crossed and watches as each child takes his turn. He looks on in awe as the spiral slowly transforms from dark to light.
My two older children participated in this festival when Kelly was a baby. I felt forced to sit quietly while 26 children s-l-o-w-l-y took their turn around the greens. MAN, I thought it would never end! When Kelly was old enough to take his turn, things changed for me. I watched how he sat in wonder and when his turn came, he jumped up and proudly walked the spiral and met the angel in the middle. At first I worried. Would he know what to do? Would he walk the wrong way?
But in the end it doesn’t matter. Kelly does it in his own perfect way. He is always beaming with pride when he finishes. “I did it,” he whispers in my ear.
This boy taught me to sit quietly in awe. He showed me what reverence is.
The Spiral Walk is now my favorite of all the yearly festivals. I love to sit in the silence and watch the children walk carefully with their light, their faces aglow. I, too, am moved by the growing circle of light. Kelly sits by my side and lays his head on my shoulder and watches. I breathe deep and accept this moment of grace- the beauty unfolding in front of me and sitting beside me.
I take Kelly’s hand and am thankful, once again, that I was chosen.
Happy birthday, beautiful boy.