anniversary

It’s been ten years since I pushed that little life into the world in an upstairs room of our old victorian. I spent the night before alone in a bathtub, isolating myself and my baby, keeping this sacred experience ours and ours alone.

I knew it was a girl and I also knew she was not right. An ultrasound at 30-weeks hinted that our baby had Trisomy 13–a chromosomal abnormality incompatible with life. That was the only doctors visit I had with this baby. There was no need to go back after that news. My health was monitored by my midwife, but I only remotely cared. I knew I was healthy and I knew my baby wasn’t. I labored alone in that tiny bathroom with only one hope-please let her be born alive, please let me have some time with her.

The sun rose as if it were any other November day. My husband checked in on me and I sent him away. Terrified, he packed up our four other children and left the house for the day. I creaked open the bathroom door and got into the bed in the room across the hall. Just me and my girl, alone.

When we got the diagnosis of Trisomy 13, we were stunned. After having two healthy boys, our third child surprised us with Down syndrome (a chromosomal abnormality of the 21st pair) and our fourth with congenital defect that needed immediate surgery and hospitalization. We felt like we had paid our dues and then some. Why another crisis? How could we endure it?

But that’s what life does– hands out situations and we deal with them. Even when we think we can’t, we do it anyway because there is no other choice. I brought that baby into the world and felt blessed that she was alive, even if it was for a short time. In times of intensity, you live in the moment because the future is too hard to bear. Breathe in, breathe out…one foot in front of the other, that’s how you get through. Existence is reduced to it’s simplest state.

Now, ten years later, I sit on a peaceful morning and reflect back. Man, that was hard.

But it was also beautiful and full of grace. I not only birthed my second daughter on that day, I birthed a new version of myself. She changed me.

Oh, to the unknowing eye, everything looked the same–exuberant kids running through the house, laundry piling up, groceries waiting to transform–but it all looked different to me. The prism through which all things passed shifted, and my perception of the whole world changed. There was a sacred bubble of time when almost everything I saw took on a mystical quality; I’d see a bird at the feeder and would need to stop and stare in awe (Look at that thing, will you? It’s miraculous!)

My raw and open wound made me more vulnerable to beauty.  It flooded in and left me dazed.

As I write about it now, I surprise myself by yearning for the intense wonder of it.  But the true gift of that time is that my prism never completely shifted back. Ava allowed me to live in technicolor for a short time and I remember what that feels like. It’s far too bright to live there forever, so time graciously dimmed things a bit for me, but life can still dazzle me when I decide to pay attention–in a way that I never had access to before. It feels kind of like a secret, wondrous room that only people who have suffered are allowed admission to, and if you haven’t experienced a certain level of despair, you can’t have the key (nor do you want it!)

But I cherish that key and take it everywhere I go,

and on the greyest of days, I reach for it and unlock the wonder of the world.

 

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our view today on Ava’s 10th birthday

I saw grief drinking a cup of sorrow and called out, “It tastes sweet, does it not?”

“You’ve caught me,” grief answered,

“and you’ve ruined my business. How can I sell sorrow, when you know it’s a blessing?”   ~Rumi

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Game Changer

We went to the ocean a few weeks ago. On our way out of town I realized that I had forgotten Kelly’s swim shirt–a must to protect his shoulders and back from the sun. I was trying to beat the Cape traffic, so I rushed into a store on our way out of town and quickly grabbed the first one I found in his size without really paying attention to the decal on the front. It wasn’t until the next day on the beach that I truly saw what I had picked for him. I laughed out loud when I finally took in how perfect that shirt was for my boy.

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First, there’s the obvious irony of the statement; Kelly is truly very coordinated and athletic. He can hit the hoop and bring the bat to the ball, but he doesn’t really care about the rules of the game. He might just run from first to third base, skipping second all together. He may change the game, but maybe not how the his team members were hoping, so having him wear this shirt made me smile.

And then there’s the other meaning of this label. Kelly was our family game changer in so many ways. He turned our “normal” family into one that was not. He opened our hearts. He gives our lives more depth and continues to teach us to see. He reminds us to lighten the hell up. Kelly completely changed this game of life for our family and we are so very glad he did.

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fireflies

My husband’s away and I am doing bedtime solo. It’s 9 o’clock. The twins are in bed and Grethe’s door is closed. In the chaos of getting two seven-year-olds quiet, I have lost my fifteen-year-old. This is my boy with Down syndrome and he likes to run on his own schedule. That is not how things work in our house, however, and tonight I am in no mood to play games.

He is not upstairs. I call downstairs and get no answer. I feel the tingle of anger in my chest. Dammit, I am tired! I am ready to be done for the day. I step out onto the front porch and stare into the darkness of the adjacent school playground, Kelly’s default location. I call his name into the night and listen…

“Alone!” is his exasperated reply.

Well, you know what, Buddy? I’m pissed, too. We live in a neighborhood so I try not to shriek back. I calmly and sternly inform him to “GET. BACK. IN. THE. HOUSE!”

The order is met with silence–a deeply frustrating silence.

I take a breath. My anger is now in my throat and is starting to feel like rage. I envision running onto that playground and dragging him home. He’s a solid buck-25 now though, and force does not work so well these days.

This is starting to become one of those times when I am worried about my temper. Every parent has their limit and I feel like I am close to mine. It has been a long day.

I decide to get myself ready for bed to calm down. I call out very reasonably into the abyss, “Come home now please!” and I head upstairs. I brush my teeth and start to massage my face and neck with my nighttime essential oils. I relax a bit, but then through the bathroom window that faces the school I hear the unmistakable sound of tires on gravel. There is a car in the parking lot. As I rinse my face, my tired mind starts to wander…is Kelly still over there? Who’s driving through the school lot on a dark Friday night? We live in a safe neighborhood but still…

Now I feel a different emotion rising: fear.

I finish as quickly as I can and rush back onto the porch,”Kelly!” I scream. Nothing.

I don’t really think anything bad has happened, but I don’t know that it hasn’t either. I don’t want fear to take the lead, so l let the anger rise again. And rise it does–I am furious. I race onto the
playground, “”KEL-LY!”

Two syllables now. That’s bad.

More silence again. I am getting really worked up now. Fatigue, mixed with anger, and a dash of fear is a dangerous concoction. A small, irrational place inside of me thinks about physically hurting him–maybe just a hard pinch or a yank of his hair–something to pay him back for putting me through this, but I know that’s my emotions leading me. I have been parenting too long to turn my problems into his.

Just then I hear a far off noise. A voice talking. It’s coming from over the cedar panel fence, in my own backyard.

“Aargh!” I bellow as I head that way, every step heightening my fury.

What the fogging hell am I doing running all over the neighborhood at 10 pm on a Friday night? I storm in the direction of his voice, spewing incomprehensible disciplinary mom obscenities into the night. As his silhouette comes into view, I see that he is frantically waving me toward him. One last, “Kelly get inside RIGHT NOW!” spills forth, but he just grabs my hand and demands I “Shhh!”

He throws his arms out and gestures grandly to the darkness all around, “Fireflies,” he announces with a whisper. “Fireflies!” he insists again, in a voice that implies, “Don’t you see??”

My blind rage lifts long enough for me to look around. Sure enough, the trees and bushes are putting on a show. Lightning bugs blink and float all about in the soft summer air. The beauty of it in contrast to my anger is like a sudden slap and my eyes sting with tears.

Kelly sits cross-legged on the damp grass and stares in wonder at the show before us. I drop to my knees next to him and lean into his sturdy frame. My tears flow openly now, my demons have left me spent. While I was wasting time with rage, Kelly was sitting in awe.

As we watch this gift of nature together, I drink the sweet, night air deep into my lungs and find my way to calm. We sit in silence until we have had our fill.

Finally, Kelly gets up and reaches his hand down to help me to my feet. “Time for bed,” he says as he pulls me toward the house.

I follow his lead once more.

“If the stars should appear one night in a thousand years, how would men believe and adore ~R.W. Emerson (and Kelly Thurmond)

 

chosen

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.

kelly baby

 

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.