my son’s eyes

My son’s eyes are different than mine

While mine grew into orbs as I floated in my early existence

Cody’s were but a figment of my anticipation 

Products of Nature’s Creative Intention 

thwarted before they even began

 

My son’s eyes are different than mine 

While mine opened to take in his newborn beauty

Cody’s rested closed 

Eyelids meant to part at nature’s light

left shut, without purpose

 

My sons eyes are different than mine 

While mine search for meaning in rays of colour and light 

Cody’s expand and create new pathways of delight 

Nature’s Creative Adaptation at work

new networks growing into being

 

 

My son’s eyes are different than mine

While mine rest and close out the night

Cody’s open windows to a world of light

I never knew existed

 

My son’s eyes are different than mine

While mine decipher shape and function

Cody’s sculpt a tapestry of wonder

Nature’s Creative Artistry grows a bouquet of mystery

I may never fully understand

 

 

gulf

 
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Cody,

There is this place in my dreams where every once in a while, not very often, you speak to me.  Your words pierce the gulf of silence and darkness which lies between us.  I awaken in wonder, with tears of yearning that I know you must share.  Your words, beautiful words, are so clear and crisp, so true and marvelous.  They astound me.

For it is as though you sit on the other side of this gulf that divides. So near to the touch, and yet so far, for the gulf is deep and vast.  It is deep enough to hold the hopes and dreams, thoughts and yearnings swarming inside of you, the ones that don’t make it to me.  It is dark enough to swallow the hopes, the pain and the unknown…my many attempts to cross it.

I see you sitting there, on the other side.  I sit on the edge and reach for you.  I reach for you when I see your body contorting, screaming, hitting, pulling, crying.   I extend you my heart, this container that strains to catch some of your pain and confusion.  I reach for you when I see you sit silent and motionless.  I close my eyes and try to see what you see, to imagine what you imagine.  I reach for you when I see you struggle with the chaos of this world, how your mind wars within as your emotions spin out of control.  I reach for you when I see your smiles and laughter…what is it that brings you this moment of joy, this flash of happiness?  I reach for you when I see the tears fall.  Oh that your tears could tell me the story.

I reach for you, I touch you…but all else falls.  It all falls…for the gulf is so deep and so vast.

I’m so sorry you sit on the other side of this gulf.  I’m so sorry that I don’t know how to cross it, that I can’t remove it, that it exists.  All I can do is reach for you.  And I reach for you Cody, all the time, with my whole being.  I always will.

 

Beloved

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Someone I know, in the wake of a painful loss in his life, veered in a new career direction.  He took a job working with Steven, a man with severe disabilities which make him totally dependent on around-the-clock care.  Although the work is challenging and constant, in an ironic twist of fate this new relationship has brought with it the promise of healing and restoration.

This reminded me of Henry Nouwen, a Dutch priest and author of many well-known Christian titles, who wrote a book entitled Adam: God’s Beloved, about his experience working with a man living with profound disabilities in the community of L’Arche Daybreak.  Henry moved into L’Arche Daybreak Community in 1986, where he would serve as pastor for 10 years.  L’Arche Daybreak Community was founded by Jean Vanier, a Canadian humanitarian who has received multiple awards and honours including the Order of Canada.  He founded L’Arche after witnessing the distressing reality of life for institutionalized adults with disabilities.  These communities, now located worldwide, create open, inclusive and compassionate societies in which each person is valued and can make a contribution. Assistants come from all over to live and work alongside its “core members” – adults living with a variety of intellectual and physical disabilities.  Each person, regardless of ability, is a full and valued member of the community…all living in relationships of respect and learning.

During his time at L’Arche, Henry Nouwen was joined in relationship with Adam, and recounts his rich learning experience in his book.  In caring for Adam day after day with dressing, washing and feeding, Henry learned of our mutual dependence on each other and that we must:

“choose to give our love when we are strong and to receive the love of others when we are weak, always with tranquility and generosity…Adam’s total dependence made it possible for him to live fully only if we lived in a loving community around him.  His great teaching to us was, ‘I can live only if you surround me with love and if you love one another.  Otherwise, my life is useless and I am a burden.’  Adam clearly challenged us to trust that compassion, not competition, is the way to fulfill our human vocation.  This challenge forced us to reexamine all the basic assumptions of individual and action-oriented lives.” (p. 90,91)

Often I, as I’m sure you do as well, see pairs of people or groups of people walking together down the street, in the park, or towards the library.  In the mix are those who are able-bodied and those who are not, those sitting in a wheelchair and those pushing from behind…those who may be speaking in words and those who may be speaking with their arms or other verbal utterances.  I love watching them.  In them I see the simplicity of human relationship; the giving and the receiving.

I do not believe that any greater Love purposefully intends for some of us to live with disabilities for some greater purpose.

I do not believe that those living with disabilities are intrinsically special or are angels sent from above to teach us; this view if anything, I think, belittles their humanity.  I would tend to think that if those with disabilities had a choice, they might choose to live a healthy life….but maybe not!  I cannot begin to assume I can speak for others living with these kinds of challenges.  I, of course, think Cody is special, just like I think Jessica is.  And, I can likely safely say on behalf of Cody that he doesn’t think he’s special…he just wakes up each morning and wants breakfast.  He wants to have fun at school, enjoy the warm sun, be with the people he loves…and I’m sure he’d love to be able to see if he knew what sight was, and I know that he wishes he could speak.  He does not want to be anybody’s angel or teacher or guide.  He does not want to be special…he just wants to live his life as fully as he can.

What I do believe is that in this human life there are various challenges, in all forms, that are intrinsic to living.  Many challenges are extremely unfair and extremely painful.

What I do believe is that no matter the challenge or disability, Grace and Beauty flow through them, and can be found in how we face them and how we care for one another.

 

loads

We all have our loads we carry.  Some appear bigger than others.  I wonder if they actually are bigger, or if to each person the load is heavy…no matter what it is.

I sometimes feel my loads quite keenly.  A 12-year-old boy who cannot speak but is constantly asking and trying to tell me what he wants.  His attempts at supplication, his cries, his self-injurious behaviors, his anger…some days begin at 6am and don’t end until way past dark.

My daughter, whose company I yearn for, locks herself up in the basement, trying to remove herself from her brother’s incessant pleas.

I guess I could go on to list more loads.  I’m sure you would have a great list yourself.

On those days when I feel the loads extra heavy, I usually have these thoughts:

“I can’t believe this is happening to me.”

“Do other moms know how good they have it?”

“I don’t know how to help my daughter deal with this.”

“I wonder how my new husband will bear this load.”

“How can I get rid of this load?”

“This can’t be this way.”

“I’ve got to find a solution so I can change this.”

 

Then at some point I read a few news articles or listen to CBC Radio on my way home from dropping off my kids at school.

 

These are some loads other people carry:

There are those families in Syria who are raising a whole generation of children who have not been able to go to school due to the perpetual bombing and ravages of war around them.

There are those individuals and families struggling against all odds and death to cross the Mediterranean Sea.

There are those who have been sucked into the vortex of mental illness or addiction; who walk the streets, unable to keep a family, job or a home…intent only on meeting their immediate and overpowering need for the next high.

There are those who wear the white helmets, digging through the rubble of war…hoping only to find and save that one survivor.  Their only joy in the horror that surrounds is that of saving one life.

There are those children, who like my son, have disabilities, but who have been left tied in a crib or wheelchair in an institution.  These children have stopped asking for anything many years ago, because there is nobody who hears them.

We all have loads, it is the very nature of living the human life.  Why do I sometimes act surprised at mine?  Why should I not assume some of the loads that this world collectively carries, especially when considering how light mine are in comparison?  Besides, carrying loads like the ones I carry builds muscle, it builds strength and resilience…it builds patience and compassion.

The loads; they are what they are…they may alter a bit but they are always there.  But ME, I can shift…I can change…I can adapt so that I can accommodate the loads in my life, and maybe (hopefully), help somebody else with theirs.

we fear

Heaven and Nature help us

He’s just a man, sitting with his legs crossed, spinning a toy truck

 

We yearn, We need, We search, We want

We lack, We suffer, We lose, We hurt

 

Heaven and Nature help us

He’s just a man, sitting with his legs crossed, spinning a toy truck

 

We hold tight, We restrict, We curl up, We withdraw

We anger, We yell, We picket, We hate

 

Heaven and Nature help us

He’s just a man, sitting with his legs crossed, spinning a toy truck

 

We harden, We guard, We build a wall, We pick up a gun

We keep out, We close doors, We close minds, We FEAR.

 

Heaven and Nature help us

He’s a grown man, sitting in a real truck, turning the wheel

Heaven and Nature help us

We FEAR, We FEAR, We FEAR, We FEAR.

 

Heaven and Nature help us

We weep, We open, We soften, We risk

We welcome, We learn, We embrace, We LOVE.

 

We SEE…….

He’s just a man, sitting with his legs crossed, spinning a toy truck

We LOVE, We LOVE, We LOVE, We LOVE.

 

Children Need Families Not Orphanages

Wonderful recently released video narrated by J.K. Rowling, founder of Lumos, highlighting the harmful effects of institutionalization on children.  It speaks to the hope for these 8 million children worldwide if only funds and resources are re-directed towards communities and families for support and away from orphanages.

Watch video: Children Need Families Not Orphanages

choose love

Today I read a post on Facebook which has struck a chord with not only me, but also the 40,000 plus others who have “liked” it.  It was written by an actor named Kelvin Moon Loh, who, after witnessing an autistic child cry out during a quiet moment of the production was appalled at the heckles and jeers he heard in the audience, those calling for this child to be expelled.  He was compelled to write a post about this experience:

Very passionately, Kelvin expresses his belief that “theater is created for all people”, and “ultimately…to bring people together, not just for entertainment, but to enhance our lives once we walk out the door again”.  He asks, almost imploringly, “When did we…become so concerned with our own experience that we lose compassion for others?”

I also feel anger, sadness, yet also a measure of encouragement from this story.  Among the heckling and the jeering, Kelvin’s is a strong voice of love.

Sometimes, as we go about our days, we face people who may cause discomfort, who may be unfamiliar or unwelcome.  For whatever reason may be, these people may disrupt, may interrupt, they may interfere with what we value as important.  They may seem to be in the way, an impediment to our progress or enjoyment.

But we have a choice, thankfully we always have a choice.  Will our voice, though it may not be heard, be that of a heckler?

Or,

Will we reach past our own level of comfort and security?

Will we let go of our concern for our own experience?

Will we realize that we are all players in the theater of life, that on this vast and diverse stage we all have our own roles to fill, that we are all wonderfully and beautifully different?

Like Kelvin, will we choose the voice of love?

 

 

 

How do you get from A to B when you can’t see? Part 2

When Cody was 3 years old, he started Orientation and Mobility lessons (O&M) with a certified and trained instructor.  It involves orientation – knowing where your body is in space and where you want to go, and mobility – how to get there safely, effectively and efficiently.  It teaches how to use your senses to become aware of what is around you, spatial concepts (objects continue to exist even when you don’t feel or hear them), searching skills, independent movement, sighted guide (when you hold on to somebody else’s elbow who can guide you), protective techniques (like using your arms as a bumper when you lean down to pick something up), and cane skills (how to use a long white cane).

O&M involves understanding what “left”, “right”, “behind”, “in front”, “around”, and other such words mean so they can be used to guide you.  It involves locating and using landmarks to help you figure out where you are.  Some landmarks Cody uses are pieces of furniture, changes in flooring, following the edge where the grass hits the pavement with his cane, trailing the walls to find a particular doorway or physical reminder of where he is,  stepping stones in the yard, etc.

He also uses audio landmarks like fans, music sources, the sound of traffic, and even more ambiguous sounds like changes in sound deflections.  This more complex form of audio cue is called echolocation.  Echolocation is also used by bats and marine animals. You give off a sound and by listening to how it deflects on objects around you, are given cues as to your environment.

There are some who use echolocation to ride bikes and skateboards completely blind.  It seems to be innate for those without vision, but can definitely be crafted and exercised to become increasingly effective.  Cody naturally uses echolocation regularly.  He often is chattering and singing to himself while he navigates around the house, outdoors at a park or in the yard.  He uses the deflections to give him information about what is around him.  We will be walking down the sidewalk along the side of the street when all of a sudden Cody reaches out when we pass a parked car. He can “hear” it as soon as we approach, it is amazing to me.  We will be in a new environment, walking towards a wall or even a short fence and Cody will anticipate it, I know this because he reaches out to find it as we draw near.  He can hear when we approach an empty space or when the wall ends.  I hope to find more sophisticated training in echolocation for Cody as he gets older.

Here Cody is mapping while he does his usual chattering for enjoyment as well as echolocation.  Cody maps areas by repeatedly walking along a route back and forth.  In this way he memorizes and fixes routes in his mind to recall for future.  He does this with or without his cane, at home, outside, in other peoples’ homes and at school.  Once he has learned a route he can navigate it very quickly and efficiently, sometimes even running!  See how he uses his left hand to trail the perimeter:

 

Here Cody is at his Orientation and Mobility lesson with his instructor at the new school he will be attending next year.  They go there already once or twice a week in order to prepare him for next year. He is here learning his route from his classroom to the curb where the school bus will drop him off and pick him up.  The instructor patiently lets Cody go at his own pace so he is independent.  She gives him small cues along the way.  He has been taught to move his cane from left to right in front of him as he walks.  Here he is learning how to find the edge of the grass in order to help him stay on the sidewalk and walk in the right direction.

 

Cody began learning to use his cane at 3 years old but it has taken many years to reach the level he is at today.  For many years he had no interest in the cane, he didn’t understand it’s power and relevance in his life.  It was only about 2 years ago that it really clicked, and he really understood how empowering it is and how it opens up his world, his independence, his ownership and control over his own mobility, enabling him to get from A to B.  Because, as Cody continues to teach me, it is not all or even mostly about the destination, but about how we get there that counts.

 

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Cody can walk with his cane independently but often likes to hold hands as well or hold your arm/elbow as he walks in unfamiliar places.

exposure

I read a beautiful yet heart-breaking article yesterday about a 67 year old man named Patrick, born blind and diagnosed with autism, who had just finished a bucket list of adventures he drew up 3 years previous.*  The beautiful part was that he was pursuing his dreams, the heart-breaking part was that he only began doing so at age 64. He had been in care since he was 3 years old, this means I am assuming, not with family but in some form of group, home or institutional care.  While in this care he had not been given opportunities to try new experiences.  Patrick’s homeshare family says this:

“He was sheltered most of his life,” Selina Olsen said.

“He didn’t get to do anything, so, once he started living with us, he started the bucket list and started thinking about all the things he’s never had a chance to do, all the things he’d like to do.”

That story has stayed with me, given me a sense of gratitude for the people and opportunities in Cody’s life, those who believe in his potential and see the value in him, and those opportunities which allow him to push his limits and feel dignity and pride in his abilities and sense of identity.

It also has motivated me to continue exposing Cody to new places, new people, and new experiences.  This has never been easy though.

Some of many memories:

  • the time my parents and I packed up a picnic lunch and beach toys, blankets, chairs, umbrellas, sunscreen, extra clothes, drinks, water toys, and snacks and drove 45 minutes with Cody to Harrison lake only to have to leave and return home only 20 minutes after setting up our lunch, blanket, chairs, umbrellas, sunscreen, water toys and snacks because Cody started screaming incessantly, loud enough to be heard by the windsurfers on the other side of the lake, and nothing we tried would get him to stop
  • purchasing a tent trailer thinking it would be a wonderful way to spend family vacations, trading in the car for one with a motor strong enough to pull it, stocking it up, packing for a trip, parking by a beautiful creek in an rv park with pool and playground only to have one of us drive Cody home in the middle of the night, while he screamed and told us clearly that it would soon be time to put the trailer up for sale
  • the time a group of us drove 1.5 hours through hot summer traffic to head to the beach at Stanley park, each carrying armloads of stuff including coolers, a little pop-up table, blankets, chairs, sand toys, umbrellas, lunch and had to haul said items, along with Cody and his cane down roughly 100 steps to the beach, only to have to take Cody home less than 1 hour later, up the 100 steps – while he screamed loudly and long enough to alert all those in the area that a child must be suffering abuse at the hands of his mom – and would somebody please perhaps call 911?
  • picking up Cody from school after his field trip to Vancouver Aquarium and hearing them explain (while Cody clutches my neck in desperation, with a face red and swollen from crying) that Cody had cried the entire 3 hours they were there, that they didn’t know why but he could not stop and they could not leave so he had to sit and wait with his tears

I never know for sure how things will go.  Exposing Cody to new experiences is exposing both of us to the unknown; it’s like playing Russian roulette, but with bullets of tears, screaming, anxiety, pain and disappointment.  I’m learning though; to stay calm when Cody is upset, to not worry about what those around us think, to remember that he is struggling and trying to regulate, to remember that he wants to try and succeed, to wait him out and support him patiently. When I try something new, perhaps waiting for the gun to go off and instead there is quiet; maybe even smiles, laughter, and excitement – it’s ecstasy.  I can’t even describe the joy.  I didn’t just escape with my life, I hit the gold mine.

 

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Day at Harrison Lake with a neighbour friend and Jessica on the right. We stayed for many happy hours that day.

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Canada Day Parade! Tons of people, hot sun, noisy firetrucks…but we did it, and we had fun!

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An afternoon at the dusty, hot and noisy agrifair. We did it! And, Cody loves rides!

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Touch a Truck Day! Full of people and unexpected noises and blaring firetruck sirens, but Cody absolutely loved it all!

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Baseball, a brand new sport for Cody. He’s a part of a team, and he fits right in.

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Riding a horse. As much as he loves riding, he loves snuggling with Lisa even more. Who knew how much he would adore this horse? It is absolutely heartwarming to witness him hold, hug and lean against her for an hour at a time.

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Climbing rocks. About 20 minutes before this Cody had a meltdown, crying and angry he had to have a break sitting in the car to regulate. When he was calm, he joined us and proceeded to shock us all with his focus and diligence climbing down and then up an embankment of rocks!

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He likes ice skating!

Cody loves fishing.

The second time we went out, he stood beside my dad for 1 whole hour, waiting for the fish to bite…content and happy the entire time!

 

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A trip to the city park becomes the highlight of his day. Listening to the fountains and feeling them spray on his fingertips, Cody could not stop smiling.

Armed with memories like these, and those we continue to create together, I’ll keep trying.  I’ll keep exposing him to this beautiful world, risking the bullets, helping him through the rough patches just to see that smile.

 

*Blind and autistic B.C. man flies plane to fulfill last goal on bucket list

“You are braver than you believe”

Every one of us needs that voice of encouragement that propels us forward.  Like Christopher Robin to his beloved Winnie the Pooh; one which says “You are braver than you believe, stronger than you seem, and smarter than you think.”  No matter what our place in life is, no matter where we live in this big and beautiful world, no matter what challenges and disabilities we face, no matter whether our home is in Beautiful B.C. Canada or tied up in a crib at an institution hidden away in the countryside…we all deserve that voice.  It may come from a loved one or friend, it may come from a stranger, it may come from inside when there is no one there…but, oh please, may it come.

Yesterday as a family we followed the sounds of a lovely creek, walking up the side of a gorgeous meadow in the beautiful Fraser Valley.  We looked down to the bottom of a creek bed at the rushing stream below.  Rocks and boulders lined the side of the creek bed, making the descent a bit of an adventure.

Cody was with us.  He sat at the top of the meadow on a rock, listening to the creek below.  Then came the voice… “Cody, do you want to climb down the rocks so you can feel the cool stream on your fingertips?  You can do it, I’ll help you…every step of the way.”

In silence and stillness Cody sat on that rock, considering, pondering, for many moments.  What does this mean, he must have wondered? Climbing down rocks?  Are they like the small rocks I sometimes hold in my hand, or are they like this large rock I am sitting on?  Can I do it?

As we all stood waiting for his response, all of a sudden Cody stood up, reaching to the hand held out to him, and followed that voice.

Down he went, rock by rock.  Following directions intently, so focused as he alternated between crouching then sitting on a rock, reaching out with hands and feet to locate the next one, and standing up while holding hands with his guide, only to repeat the process.  Slowly but with concentration and determination, Cody made his way down to the creek.

He stood on the water’s edge, he jumped several times for joy, he smiled in pride and he reached down to feel the rushing cool waters on his fingertips.

The sides of the creek bed may be steep, the rocks likely unstable, the way may be dark…but the water is clear and cool and the voice is strong.  Can you hear it?  “You are braver than you believe, stronger than you seem, and smarter than you think.”

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On his way down

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Enjoying the creek

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On his way back up

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Almost to the top!

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I’m a rock climber!