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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.

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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.

Luke and Calvin meet their baby brother

Luke and Calvin meet their baby brother

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.

boy and the sea

boy and the sea

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.

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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.

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Happy birthday, beautiful boy.

perfectly imperfect

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I passed by a mutant pumpkin at the grocery store. I was running late, but this squash was calling to me. I liked that it wasn’t perfectly round, had a deformed stem and warts all around. I liked that it had some character, not a boring ol’ globe of orange. I had to go back and buy it.

As I put my purchase in the car, I thought about all the other seemingly imperfect gifts in my life: I chose both of my cats because they have extra toes and huge front feet. My dog was the runt of the litter that barely survived. My house is over 100-years-old and bears the scars of twenty years of parenting six children. Then, of course, there are the children themselves- three of whom were born with what some people would call imperfections. My beautiful daughter was born with a life threatening birth defect, as well as several other not-so-normal attributes. One of them is a set of very unique feet. photoSomeone once asked her if she would want to “get them fixed” and she just looked at them, perplexed, and asked, “Why would I want to do that?”  She loves her feet because she knows they add to the amazing package that makes up Grethe. She understands that her unique features make her special. 

Our imperfections make us extraordinary.

I can trace my appreciation for imperfection back to the birth of my third son, Kelly. Before Kelly, I was living a pretty average life: I had a nice, handsome husband, a lovely home and two beautiful, healthy young boys. Everything was neat and tidy and perfect.

But I didn’t have the capacity to fully appreciate any of it.

And then Kelly was born and he took my perfect world and gave it a good-ass shake.

Kelly surprised us with Down syndrome and forever shifted how I would be in the world. At first, of course, there was shock. Never in my life had a known a person that had a disability and I never cared to, to tell you the truth. People like that made me a bit uncomfortable. What was I supposed to say to them, anyway? And would they even understand if I talked to them? Easier to not take the chance and just walk on by.

Then, suddenly I was a mother of a handicapped child. How could this be?

It didn’t take me long to get over my self-pity, however.  After the initial shock of his diagnosis, our family concentrated on loving Kelly completely as he was. It was not a difficult task. Kelly was absolutely adorable and a delightfully easy baby. As he grew, we enjoyed Kelly’s differences and were never concerned when he didn’t meet traditional milestones. Kelly did things in his own time, in his own way. We already had two typically developing boys, so we knew what “normal” was supposed to be like. Watching Kelly grow was (and is) a delightful adventure. We never look at him as being disabled or handicapped. He just thinks and does things differently, and we happen to think that different keeps things interesting.

Having Kelly in my life allowed me to understand that we are all imperfect And while the word “imperfect” carries a negative connotation, it shouldn’t. Who wants to be perfect anyway? Our differences are what set us apart. Our differences are what makes the world go ‘round. Imagine what a dreadful place the world would be if we were all the same. So, why the hell would we aspire to that?

At some point after having Kelly, I heard something about parents choosing plastic surgery to alter the shape of their special child’s eyes. This astounded me. Why would I take it upon myself to alter this glorious being? And for what purpose, to make him blend in with the “normal” crowd? Changing Kelly’s eyes would not change Kelly, even if we did decide to put him through such a procedure. Kelly, at 14, has no typical teenage insecurities or angst. He is the most content person I know. Clearly, his imperfections are working for him just fine.

This amazing human’s entry into my life prepared me for the lessons that were to come, and there was a lot to come– just like there will be for anyone playing this game of life. We will all experience times in our life when things seems less than perfect. The key is to be malleable enough to redefine one’s definition of what is perfect. Having Kelly taught me that. He changed the way I looked at life.

And these changes made me stronger, they made me more resilient, they made me wiser.

I no longer yearned for everything to be perfect and I learned how futile it was to fight what came my way.  It was so much easier to let go and accept, no matter how challenging the circumstance, than to fight the unfightable.  I learned to have faith that what I would end up with would indeed be absolutely perfect- a new, revised version of perfect.

I learned to look at imperfections- in situations, in individuals, and in myself- as gifts. I’m telling you, this attitude makes life so much nicer, so much easier! And in my mind, nicer and easier is the way to go. Embracing acceptance and moving toward appreciation, instead of perfection, is my goal.

This type of thinking invites the most brilliant kind of alchemy; right there in front of you, the things that once seemed flawed, transform into objects of beauty-

Objects that have been patiently waiting for you to wake up.

photo by Anna Stockwell

photo by Anna Stockwell

Happy Birthday to me

Last Friday was my birthday. It was lovely, and delightfully uneventful; my husband made me a dinner of lobster and corn (accompanied by some bubbly!) and for dessert we had Jebmade blueberry pie and vanilla ice cream. I went to bed happy.

The next day, I decided to run away. I like being alone, but rarely get to experience it. Luckily, I married well and my husband understands when I need to go. I escaped to a lovely mountain town in Vermont about 90 minutes from home. This place is special to me for a few reasons: my mom used to meet me here for lunch, two of my siblings married here, and it is absolutely beautiful.

When I pulled into my lodging for the night, I heard the ding of a text. The message was from Jeb. He had managed to get all of the kids together for a photo. With Luke living out of the house and Cal an independent teen, this is no easy feat. The last time this happened was three years ago. A lot can happen in that time, especially when puberty starts working its magic.

The photos instantly brought tears to my eyes.

My children are beautiful. Stunning. (I love how this works. We are so blinded by love for our children that we are convinced they are the most magnificent things on the planet. We would be shocked if others didn’t quite see what we see…love goggles).

And they all came out of a spark between Jeb and me. Remarkable. Our love created these human beings. That is amazing. I stare at these captivating images and I can hardly wrap my head around what they represent. These are my children. Without me, they would not exist. Without them, neither would I.

When I left for this excursion, Jeb locked me in a strong embrace. Nicky was holding onto my leg and I had just received a hug from Kelly and about twenty-five kisses from Drewzie. As Jeb released me, he said, “You sure are loved.”

Yes, one thing I know for sure: I am loved.

When that thought came into my head, I felt the most lovely feeling wash over me: contentment. Right now-this very second- I have absolutely everything I need. My life is filled with love, and when all of the other noise gets distilled down, there is nothing left but that.  

To love and to be loved. It is why we are here.

 

 

Mission accomplished.

 

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