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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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.

spiral

 

 

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.

amazing grace…continued

 

photo credit: Martha Temple

photo credit: Martha Temple

If it weren’t for Ava, I wouldn’t have these characters. That’s how I choose to look at it anyway.
I’m thankful for her lessons every day, but today there will be cake.

Happy birthday, Ava.

 

 

 cracked

My baby was coming early. I tried to ignore it, wish the contractions away, but there was no denying it. It was happening. This was my fifth child, so I knew.

The school of life had already given us plenty of intense lessons: our third child surprised us with Down Syndrome and our fourth shocked us with a birth defect that required immediate surgery and a month long hospitalization two hours from our home. We thought we had graduated, but life had other lessons for us.

As I labored in the bathtub, the fear came in waves along with the contractions. The memory of the ultrasound five weeks earlier surfaced: the suddenly silent technician excusing herself to get the radiologist. The radiologist bluntly telling us of the many abnormalities. So many problems that her condition was deemed “incompatible with life.”  Our baby girl would not survive.

Or would she? I felt I had to have hope for the little life inside of me. Ava. Sweet Ava. Couldn’t she defy the odds? For five weeks I oscillated between cheering my miracle baby on and knowing that she would die. The constant peaks and valleys of these emotions were relentless and exhausting. My labor truly began at that ultrasound. All the questions, questions, questions, tormenting me every hour of every day and into the night. What would this mean for my family? How would we get through this? How would this affect my other young children? Why? Why us? So much uncertainty.

Until finally there was no more room for thought.  The moment when everything changed, when the worries of the past and future can no longer exist. Every sense focused on the now. Any birthing woman knows this intense time: transition-the time when you cannot go on, yet the only choice is to move forward, to move beyond everything you thought was possible, opening beyond what you thought your limits were. You cannot bear for things to escalate, yet they must for this new life to be born, for the world to change.

And Ava would change us in the deepest, most profound ways and answer all of the questions. There was nothing that could be done for her, nothing for us to fix. Her body was just not made for this world. She would leave the world in the very same room she entered. She would only know the touch of those that loved her, the sounds and smells of a busy, loving home. This tiny life would be with us for just ten days, yet she would be one of our greatest teachers.

New and fascinating questions emerged for all of us to ponder: What happens when we die?  Where do we go?  What is Heaven like?

We were able to openly explore these questions and my older children would come up with even more: If death happens to everyone and every living thing, why are we so afraid of it? Together we journeyed through life’s most awesome mysteries and for a small bubble of time, death would not be dark and scary, but graceful and peaceful and full of love.

And mixed with this grace would be life itself. The full spectrum of which would unfold before us in ten short days.

And then, abruptly, we would be marched forward.  The fragile, beautiful bubble of that sacred time would burst and the urgency of life would take over once again: children to feed, dishes to do and balls to be kicked.

But Ava opened us all up to the glorious possibility of angels and that could never be taken away.  Suddenly, there was a whole new dimension added to life. What a comfort it is to think someone is looking out for us, helping to guide our way.  Maybe we are not alone in all of this. Maybe there is more.

I would never have asked for this gift. If the gods had sat me down and said, “Listen, we’re going to give you a baby. We know that you’ve been through a lot already and you’re not expecting another, but this one will teach you so much more!  She will be born with a lot of problems and you and your family will have to face them head on. You are going to have to dive right in and explore the full spectrum of all that life has to offer, from birth to death.  You ready for that?”

Hmm, gee…No, I think I’ll pass on that experience, thanks all the same.

There would be no way to understand how the depth of this experience would alter the very fabric of who I am. I would have no way of knowing that having and losing this child would leave me more appreciative, more spiritual, more compassionate. More. Just more.

This tiny soul would stretch me in ways I didn’t know I could survive. She would take me places I didn’t know I needed to go. She would change me and mold every part of who I am, never to be the same.

The experience would break me open and when I would heal, the pieces would not fit back together so seamlessly.  There would now be cracks, and through these cracks, slivers of light would touch places inside of me that had known only darkness-places that I didn’t know were there.

Ava taught me that there are some things I just cannot control, no matter how much I question, or worry, or work. She showed me that despite how hard I fought, I would never be in charge. And when I finally gave up the fight, surrendering would bring sweet relief. I learned how nice it was to give up the illusion of control.

This experience moved through me and changed me. It did not crush me. Things were okay. They were really okay.

These lessons are hidden in the scars that now make up the intricate tapestry of who I am. They are not unsightly and they are no longer painful. Their complexity and depth add a whole new dimension to this person that I call me. Now all of life has to pass through the filter of these scars, making my everyday experience is more rich, more colorful and more delicious because of it. They are lessons that I would never ask for, yet they have been essential to my growth, my evolution. They cracked me open to the idea that maybe this is exactly what life is about: healing and learning and growing and healing and learning and growing.

I wish I could say that the next time life comes a-calling, I will greet her with no resistance, but I cannot be sure of that. I know that the intensity of my time with Ava has left me wiser and stronger, but I am not totally fearless.  Not yet.  That will take more work and more lessons- lessons that I have no doubt life will supply.  And with these inevitable lessons part of me will crack and, hopefully,

I will welcome the light.

my girls

my girls