Wednesday, April 27, 2011

'In each other's eyes, we are enough'























'In each other's eyes, we are enough'
By Louise Kinross

“Monkey man. Monkey man.”

A two-year-old stood over my son in the sandbox, pointed at his face, and chanted the words like a mantra. It took me a second to make the connection. Then blood rushed to my head, it hurt to breathe and my eyes stung with rage and shame. My son’s ears did stick out like a monkey’s. But I wasn’t in the mood for educating.

“Time to go home Ben,” I said, scooping him up in my arms. I limped back to the safety of our house, where I didn't have to fear the judgment of others.

It was a few months later that I got out the baby album. I wanted to send photos to a family in San Diego whose child had the same rare genetic syndrome as my son. When Ben was diagnosed, there were only 60 reported cases of Langer Giedion Syndrome in the world. Children with the syndrome are born missing two genes on the long arm of chromosome eight, resulting in unusual craniofacial features and a host of bone, growth and learning problems.

I hadn't looked at these photos in two years. And I was in for a surprise. At first, I couldn't believe my eyes. The pictures were not the way I remembered them. How could that be? This was my son Ben’s album, but the baby in the photos didn't look like my flesh and blood son.

Now a toddler, my son had big, bright, piercing eyes that could drill a hole of tenderness in your heart. My son had a dimpled, ear-to-ear grin, pudgy cheeks and an adorably large head that made him look like a little Buddha. My son had fair skin and extravagantly long eyelashes.

The baby in the photos looked odd: ears that stood out and didn't line up, an unusually broad forehead and wide nasal bridge, and thin lips that gave a blank look to his face. His eyes slanted down a smidgen, the tip of his nose was flat and there was a smooth faint line where there should have been a vertical groove above his upper lip. His head was too big and his features seemed out of proportion.

My gut turned.

It was like looking at one of those trick pictures. The first time you see a profile of an elegant young woman looking off in the distance, and that's all you see. But then someone explains how to look differently at the picture: what if the young woman's ear is really an eye? Suddenly, the face of an old woman with a large beak of a nose and a pointy chin pops out. Where did she come from? And then your eyes will not allow you to see the young woman again.

A switch had flipped in my brain, and no matter how many times I squinted or closed and opened my eyes, I could only see the odd features and asymmetry of my boy's face. I couldn't see the baby that I held in my mind's eye. I couldn't see my flesh and blood Ben.

Three years before, I was pregnant with my first child. Like most parents, I could only envision our creation as perfect: conceived of our love and possessing an original mix of our DNA, this child was new, untouched, more part of the unknown, spirit world he came from than ours. Knowing he was a boy, we had already named him Ben Keegan – Keegan meaning 'little fiery one.' Fittingly, he woke me with kicks at about 4 a.m. each morning. I would walk to the window, look up at the blinking stars and wonder who he was and where he came from. The stars represented the mystery and majesty of my son and my longing for him.

"Ben is here," my husband D'Arcy exclaimed the night he arrived. I tried to focus on the little body with a tuft of dark hair at my feet, but he was quickly whooshed away. I lay back, wet with sweat, spent and spilling over with joy. D'Arcy kissed me. "Is he all right?" I called out. "D'Arcy, go see Ben!"

The midwife returned and put her hand on my arm: "He has some unusual features," she said. The words floated by me like distant clouds. My euphoria was complete.

When he was finally passed to me, wrapped up in a blanket with a little white stocking on his head, he did look different. I was concerned, but I wasn't panicked. I didn't know how to interpret his appearance. "Isn't that the way all newborns look?" D'Arcy asked.

The pediatrician arrived, unswaddled Ben, and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. I hadn't noticed anything unusual about Ben's eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did 'anti-mongoloid eyes’ mean?

"In Down syndrome, the eyes slant up," he said. "Your son's eyes slant down."

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor inspected him, piece by piece. "The timing wasn't right," he muttered, shaking his head. My jubilation, a brilliant, burning fire, was now flickering in the wind of a competing grief. How could my son's birth be wrong?

The doctor said Ben's symptoms looked like a chromosome problem.

We took him home in a haze of shock. "Couldn't we still be a happy family?" I asked my husband on day three. On day four we saw a geneticist. Based on his 'abnormal' features, she suspected Ben had Langer Giedion Syndrome.

But outside the clinical setting, a different picture was taking shape: my boy was growing beautiful before my very eyes. I wrote in my diary:

2 weeks and a day


You have very delicate features – beautiful blue eyes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips.


3 months


You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big, blue, long, long lashes. You have an all-out, ear-to-ear grin with dimples.


6 months


It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

In my eyes, he was physically beautiful. And it wasn't just a spiritual thing. Perhaps my eyes balanced out what was odd. Perhaps it was a matter of emphasis: in the same way that our brains can organize that trick picture to reveal an old woman or a young woman, I organized Ben's face in a way that made his features beautiful to me. Or perhaps it was simply a choice. I chose to see beauty.

I expected others to delight in my boy like I did. When they didn't, a black hole of grief opened up inside me.

A friend responded to Ben's photo by describing him as impaired. “I don’t think people are repulsed by Ben,” she added. Repulsed? I looked at the photo I had sent. To me he was irresistible.

Specialists who were consulted on other parts of Ben’s body couldn't resist documenting that he had "dysmorphic” facial features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. Dysmorphic: adj. "Malformed, misshapen or underdeveloped." One surgeon entered a clinic room and, without introduction, demanded angrily: “What is WRONG with his head?”

In my eyes his differences dissolved because I saw his face and being as a whole. But to other people, the features superseded the boy. In their eyes he was – at the core – different, an oddity, something less than human.

As I paged through Ben's baby pictures that night, I saw him through their eyes. For the first time, I saw the boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. My eyes couldn’t correct the face in the photos – creating symmetry and proportion where it was lacking – like they did in real life.

It's been many years since then. Now, as a teenager, Ben has more disabilities than we ever imagined he would, and the one plastic surgery we chose to put him through, to try to reconstruct his ears, didn't work. Whenever I find myself weighed down by his medical picture – which is just one view and which inevitably focuses on what he isn’t – I know how to find my way back to a more true assessment.

I look into his large, deep-set eyes, which have, since babyhood, turned hazel. I can see my face reflected in the star-like light at the centre: he is part of me, and I am part of him. He has eyes you can fall into, and which are capable of communicating anything. In his eyes, I don't see the things that are wrong. I see Ben – which in its Hebrew form means ‘son.’ Is it possible that his wholeness derives from the simple fact that he is my son? He is mine. When I look into his eyes, I see a beauty and goodness that transcend appearance. His eyes mirror back my joy and acceptance. In each other’s eyes, we are complete. In each other’s eyes, we are enough.

Reactions:

19 comments:

Louise, this is one of the most beautiful and heartbreaking essays that I have ever read in my life. And I can understand that the intense love you have for Ben, the flow of life and love between you and his incredible power and beauty must be the inspiration for such powerful words. Thank you from the bottom of my heart for sharing them with us. My eyes are filled with tears --

Thanks Elizabeth! It's a piece I wrote a couple of years ago when I was doing an online writing course. I appreciate your support -- always! xo

Dearest Louise,

What a beautiful story about birth, love, acceptance, struggle, disability, and peace. I can only hope that I too, one day, am blessed by marriage and children of my own. For, I have heard someone say, "There are no take backs or refunds!" The only thing I ask is: "To be enough in the eyes of those I cherish."


"Ben is perfect just the way he is."

love
matt

Oh Louise,
This is just so beautiful, so poignant. You have taken me on your journey of hope, loss, acceptance and love. It is a journey I know well but one I often bury. I cannot stop the tears. I admire your bravery and your courage. I celebrate your son and the precious love you share with him. Thank you for writing this post. Please consider publishing it for it is so very inspirational.

Louise,

I completely relate to everything you have written here. I would love to link this page on my blog. Do you mind if I do?

Lisa

Thank you Matt and Lisa! :)

Lisa -- Tabitha's mom -- of course you can link to it!

Louise, I'll be linking to this post as well--beautiful and true.

Oh Louise, that was so eloquently written. It was beautiful. Wishing you all the best!

Irene

He's so sweet to my eyes I only see a very cute toddler there too. So beautiful Louise. I hate how doctors notice and need to point out to us everything different in our children. I wish they could see through a mother's eyes.

Oh, Louise, your love for and acceptance of Ben make me want to be a better mom to my Benjamin. Thank you for that.

Louise, this is simply beautiful. Thank you for sharing it with us.

Louise this is such a lovely piece of writing. Thank you for sharing.

I remember sitting in the NICU reading Julia's chart hoping for some clarity about our future. I will never forget the list of dysmorphic features, a seemingly random collection of critiques of her appearance. I laughed at 'depressed nasal bridge' because she's half chinese!
Now I look back and understand that these were clues the doctors were using to seek a diagnosis but I still feel that there was a disconnect between the notes and the attitude towards this person.
My daughter is more than a collection of features or a genetic diagnosis
Lisa

Gorgeous writing about your beautiful boy.

You are so gifted at capturing the essence of both our joys and worries! Thanks for sharing this lovely piece with us. And I mean really, what's not to love about that sweet little face?! Ben's beautiful!

(sorry - should've signed that last post! Maxine)

This is so beautiful. It brought tears to my eyes. Thank you for sharing.

Louise, Ben is beautiful because you can see him with the eyes of love. You are seeing him as he really is. If we could all see with the eyes of love, this world would be transformed! Ben is adorable. from Mary Therese

Hi Louise, a very powerful piece that resonates with the full gamut of emotions. We also have a daughter, Alessandra, with LGS. In many ways we have lived in denial for her near 14 years. The lack of clinical cases back in 1998, left us with a path almost devoid of medical help. So we soldiered on...

Now that Alessandra is a teenager, it has become increasingly clear that our approach to her physical, mental, emotional and learning development need to shift paradigms. The physical DNA realities of LGS manifest in very subtle and yes frustrating ways that no parental toolkit has equipped us for.

But how? and to what? These are questions that have me frustratingly stumped, pushing us into the darker corners of life that seem to get worse with each passing cycle of failed expectations of not ever being certain if the next day will start where the previous day left us or whether we have to start anew. It is almost as if we are in the Bill Murray movie, "Groundhog Day" where the successes of a given day are thrown out and life and its challenges begin anew the next morning.

I wonder the extent to which LGS has a brain "wiring" dimension that has direct psychological impact. Is there any research on the connections between the genetic deletion, how the brain is wired and managed and the emotional/logical processes that result? Is there anyone working on therapies to help LGS kids rewire or develop alternative learning strategies given the wiring issues?

Any help would be truly appreciated? And of course, we would like to be there for you and Ben as well. Best, Peter

Hi Peter -- I'm very glad to hear from you. I would love to hear more about your daughter. Why don't you e=mail me at lkinross@hollandbloorview.ca

Years ago I started an international association for families affected by LGS. We had Dan Wells at the University of Houston on our medical board -- he's done a lot of the research into the genetic basis. Unfortunately it is such a rare condition that there isn't the kind of research you're talking about.

In addition to research looking at the genetic changes, there was some research related to cancer because the EXT1 gene is a tumor suppressor (that's why our kids have bony growths in the wrong places).

Please e-mail me and we can chat further.

Thanks! Louise