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

 

 

seasons of life

Like our earth on its axis, we are meant to rotate through the many seasons of life.  On our journey from birth to death, our minds and spirits change as we grow in body and experience.  My 16 year old daughter and I were recently looking ahead to the year after next, when she completes high school.  We talked about her plans and hopes and spoke of the practicalities of learning how to live and function independently in this great big world.  I experienced anxiety as I imagined my daughter, who once had to hold my hand while we crossed the street, now walking the streets of a big city on her own.

The other day I watched a mother struggle with her toddler son at the grocery store; her fatigue and exasperation evident as she tried to console and bargain with him so that he would stay seated in the grocery cart.  I remember thinking: She won’t have to do that forever.  I imagined them years down the road, coming to the grocery store together and talking about what they would make for dinner, a young boy fully capable and independent.  He would’t need to be seated in the cart any longer.

When I hear or see new moms exhausted from sleepless nights, diaper changes, feedings, and taking care of a being who is completely dependent, it reminds me of when I was a new mom to my daughter.  It is exhausting!  It feels like it will never end, but all of a sudden your child is potty trained, and all of a sudden they can clean up after themselves in the bathroom and change and dress on their own. They can start feeding themselves and walking on their own in public places.  The baby grows and changes, the natural seasons of life transpire and responsibilities ease.

I’ve had a group of adults with differing abilities come to the library regularly for a social literacy time.  These are men and women, in their 20’s and 30’s who spend their days with caregivers in a day program.  In the evenings and on weekends they live at home with their parents or foster parents.  We spend our time learning how to write each other’s names, how to read simple sentences, how to complete fill in the blanks.  We talk about animals, about airplanes, friendships and outer space.  The topics and tasks we do are very likely the same as they did 10, 15, 20 years ago.  They have not experienced the natural cycle of seasonal change in their lives.  They have not experienced romance, post-secondary education, marriage and children, professional careers.

I take Cody to the playground and I watch him, a big 13 year old boy, sitting at the top of the slide sometimes scared to go down.  I remember doing this with him 10 years ago, 7 years ago, 4 years ago.  I hear Cody up sometimes at 3am, upset about something…or still wide awake at 12 midnight.  I remember the stress of these sleepless nights when he was a baby, I remember it 8 years ago, I remember it 3 years ago.  I help him clean up after himself in the bathroom and I remember doing the same thing when he was 3, when he was 7, when he was 11.  I help him eat a food which is tricky to use a spoon with and I remember doing the same thing when he first started eating solids, and each year after that.  I try and calm Cody during a meltdown.  I remember doing this when he was 2 years old, when he was 5 years old, when he was 12 years old.

I remember doing these things and I realize I will be doing them for many, many more years.  I realize that though the rest of the world grows and changes, much of what Cody is will not.  I think one of the aspects of living with certain disabilities that is the most difficult to accept is this: There is no natural cycle of growth and change.  Things stay the same.  When everything in your being yearns to see change and growth, you realize that in many ways you are stuck in time.  It goes against every natural inclination, every natural force within.  And when things don’t change, fatigue can weigh heavy, despair can creep in.

I imagine what it is like for Cody.  He is 13.  He has already experienced puberty.  His body has shot up and outwards in all the ways it should for an adolescent boy.  He has urges and hormones. He experiences his increased strength and that his peers are changing too.  All the while, his mind for the most part stays the same.  His abilities to speak, if anything, have decreased.  If it is difficult for me as his mom, I try and imagine what it is like for him.  How does it feel to experience the passing of time in your body and in your world without being able to move with it?

My intention is to help Cody grow and learn, it always will be.  But I have to accept that much will always stay the same.

 

 

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.

 

family vacation to the happiest place on earth…Together

As you walk down Main Street you are filled with sights and sounds of happiness.  Smiling Cast members, Disney characters waving, children exclaiming and pointing, Disney music that seems to be embodied by the very buildings and sights around you,…and inside you, your heart sings.  Disneyland!  I’m actually in Disneyland!  As you approach the central square you are welcomed with an iconic statue titled “Partners”, framed in colorful flowers and trees blossoming, with Fantasyland as it’s backdrop.  The figure of Walt Disney, holding hands with Mickey Mouse, waving and welcoming everyone.  Underneath you read the following inscription, Walt’s own words:

“I think most of all what I want Disneyland to be is a happy place…where parents and children can have fun, Together.”

Partners

Partners

I had thought of bringing Cody to Disneyland a few years back, when Dan and I took Jessica for her first magical visit.  I built up my courage a little…only to back down and decide to leave him with my parents, back in Palm Springs where we visit yearly over Spring Break.  We had a magical time of 2 days there, …but Cody wasn’t with us.  The “Together” wasn’t there.

Several years later, and another plan to visit Disney and Mickey emerges.  This time I feel courageous, my parents will join us, I have some ideas and tools I will use.  We spare no expense.  We rent a house in Anaheim, close to the park…with a heated pool and hot tub for Cody to enjoy.  I figure we’ll need to have short days at the park and will need an oasis of rest to return to.  We rent a house with enough rooms that we all have space; space for comfort and quiet. Dan brings his nephews from Alberta (aged 13 and 15); flies them in to join us on their first trip out of Canada.  This time, we will be together when we go to Disneyland…Cody will join us.

There is definitely anxiety as we lead up to this trip.  Many questions and “what if’s” that I try to first reconcile and some which I choose to ignore.  We are a group of 8, and I desperately want each one of these 8 to be happy.  It’s a lot of pressure.  Mostly I worry about Cody.  The crowds at Spring Break are crazy; the noises and closeness to hoards of people inevitable.  The busy and almost frantic pace at which one needs to plan out the day at Disney; the fact that Cody is constantly needing food, the challenge of using public washrooms with him, the line ups…and the list goes on. How will a 12 year old non-verbal, blind and autistic boy handle it all?

I speak to him about the park far in advance; the noises, the people, the lineups, the heat, the music, the rides.  He quietly listens each time…no indication of excitement or anxiety.  I decide to rent a wheelchair each day.  Cody can walk, but his idea of walking is very different from those of us sighted people.  Walking is largely about taking in the sounds around him…he stops frequently to cock his head and listen.  He revisits little bumps and curbs and drain holes by wanting to turn around and walk over it repeatedly.  He doesn’t have the visual motivation to walk long distances to reach something interesting he would otherwise be drawn to.  By using a wheelchair, we can keep a steady walking pace, not having to worry about navigating him and his cane through the crowds.

I also bring his noise reducing headphones.  When he feels overwhelmed by the noise, these reduce the steady sensory input, softening it a bit so he can use his resources for other purposes…as opposed to having to process the noise.  I pack lots of snacks, I bring extra clothes, I bring a couple of his favourite fidgets and an extra little blue blanket.  I give him information about what he can expect; we talk about everything I can anticipate he may experience based on my previous visit.  I tell him about the different rides and how he will get in and out, how he will sit and how one of us will always be beside him.  I tell him about how some rides are very loud and shaky. I explain that to get to the park and home we will be in a different vehicle each time, using Uber as a form of transportation.  He loves cars, but he is familiar with ours, his dad’s and Papa’s…not those of a stranger.  I talk about how line-ups work and when we will have food, that there are bathrooms and times we can sit and rest in the shade. I show him the wheelchair that first day, let him run his hands over all the parts of it and explain it’s purpose.

I research and plan to use Disney’s Disability Access Pass.  It gives us the ability to reserve our space in line, all 8 of us, for each ride.  For many rides, they let us through the exit and we are able to get right on.  We will skip many 1.5 hour line ups each day.  Lineups which would have been impossible to tolerate.

…And then we are there.  We approach the magical gates, the big clumsy group of us, wrapped up and enveloped with our hopes, dreams, anxiety, excitement, love, fear and joy.  Will this possibly be what I dream it could be; for Cody, for all of us?

Walt Disney was a remarkable man; filled with all of these same feelings; full of life and aspiration.  The creations he dreamed up and brought to life have touched and continue to touch millions around the world, including us: from a 15 year old girl who can’t wait to buy her lightsaber, to a 42 year old mom who can’t wait to spot Winnie the Pooh; from a pair of grandparents who can’t get enough of Splash Mountain to 2 teenage boys from Alberta who have never seen a Palm tree, and, who after seeing the intricacies of each ride can’t believe “how they did that?!”; from a loving fiance who just wants to have fun (because he’s just a little boy at heart) to a 12 year old boy born totally blind, with autism and no ability to speak.

Walt, your dream came true; for us it truly did.  Cody absolutely loved each and every one of our 5 days there; in fact, I think he loved it most of all of us.  He was eager each day to go once again. He gave us his happy noises and body motions; smiled and jumped and flapped his hands at the mention of the next ride.  He crawled bravely in and out of each crazy ride, trusting us as we told him where to place his hands and feet and how to climb in and out.  He was resilient and had remarkable tolerance to the noises and all the crowds.  Whether the ride turned you upside down, rocked you side to side or up and down, whether it spun you in circles or took you for a lovely ride through Alice’s Wonderland…Cody loved it and did it all. After exiting a ride, he would often have a delayed flurry of excitement; jumping, smiling, giggling…his “Happy Dance” we call it.

Perfect place for your Happy Dance, Cody.

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the boy and his blanket

The boy and his blanket

The boy and his blanket

The boy and his blanket are never to part

(As he was to realize later on in the years, it was never just one blanket…for such a thing of security cannot afford to be lost with no replacement)

The blankets used to be full-sized receiving blankets, with baby elephants and blue cars which held no appeal

It was their soft feel and adaptability which he liked, fitting so snug next to him when he went to sleep at night

 

As he grew older, the baby blankets were exchanged for strips of checkered navy blue flannel, a more “grown-up” look…

…strips the lengths of which were cut in half the following year – for large blankets aren’t practical for a growing boy busy at school

With busy hands at work and play, soon the blanket found a temporary home in his front pants pocket

A handy spot to keep it, while knowing it was still there within easy grasp  – safe and sound till it was needed once again

And, to be sure, it was definitely needed…even as he grew to be a bigger boy…again and again and again

 

Needed as that soft absorbent cloth, the kind that cleans his nose so easily…the kind that wipes his tears so perfectly

The pliable napkin that gets rid of that little bit of food he can feel on his cheek, or the juice which dribbled down his chin

Needed as that quick reassurance that although things around him change, his blanket remains

It only takes a quick hand into his front pocket, a quick tug and it’s free to tell him – I’m still here, it’s okay

…many things change, but many stay the same

 

 

It is not always easy to keep a hold of, for this blue blanket often is in the way

The boy’s diligence and patience for doing so only serves to prove his grand affection, for there is rarely a time when he lays it down

Not even if it means placing it under his left armpit while he puts deodorant on his right

Not even if it means holding it in his mouth while he grabs his clothing with both hands to dress

To be sure it accompanies him at mealtimes, finding it’s place between his right thigh and the seat of his chair

 

Parting with it is such sweet sorrow, the daily exchange can be one of intense emotion

For when the dirty one goes in the laundry, the new one is not quite the same…

…for throughout the day, this blanket gathers aromas – aromas which are like treasures to the boy

Aromas of his tears, smells from what he enjoyed at snack time, the accumulated moisture of a day

…gone to be washed are the memories of his hours, the essence of comfort and security

 

No one will likely understand fully what this blanket means to the boy

One only has to observe him to see its priceless value

The way he smiles at its touch, and places it to his nose as though he were smelling the fragrance of a rose

When he reaches for it and it is not found, the way he calls after it…

How if the search takes too long, there is a panic, a painful cry, a sorrowful longing

Before he walks out the front door to face a new day, the way the boy reaches into his pocket

Is it there? Yes, it is…and it’s going with him

…For the boy and his blanket are never to part

 

 

 

 

 

 

Another year of learning

On the first of this year, my boy turned 12. Another year of growing and learning together; discovering what the limitations and the possibilities are, experiencing their pain and their joys. Reflecting on the year and looking forward, these are some thoughts…

His body is changing, his emotions are often at a peak, he is experiencing his sexuality, he is stronger, and he has a will to exert his independence.  This year he really started to show this by pushing me away when I tried to help, by letting go of my hand as we walk down the street or in the mall or into his school – wanting to go it alone.  I am learning to increasingly back off and let him express his growing sense of self and capability.  I try to remind myself to keep my hands from directing him, to limit my words of instruction, to let him experience his sense of dignity and respect, his need to be in control of his own body.  I realize how important it is for me to continually give him the tools to be independent.

His desire to be courageous and experience adventure is increasing. What I used to see more as resistance, I see now more clearly as uncertainty and fear.  He wants to try new things, and his attempts to initially reject them are not a sign of disinterest, but a sign of genuine fear.  I am learning how to give him more time, to encourage him with words that empower: “You can do this, you are strong, you are brave…”  Together we’ve experienced the sheer exhilaration of conquering his fears together and the pride of accomplishment; the value of which cannot be measured.

He is learning how to manage change and transitions to a much greater degree.  His adaptability this year was severely tested.  With his changing body and the hormones which accompany that, to the change in school (and all the incredible changes this represents from teachers to classmates to schedule to building), the birth of his half-sister Kate and the change in dynamic that represents, to my change in schedule as I graduated from university and started working way more than I ever have (Mom’s not around as much, more caregivers, more transitions).   He struggled through the spring and summer with regular bouts of depression and self imposed isolation which tortured me.  But he kept plugging along.  He emerged from that period and pushed himself through all the changes and transitions.  He grew stronger because of them and has embraced the new school, the new family, the new realities around him with success and admirable courage.

He is increasingly ready to learn and it is up to us to engage him, to adapt materials for him, to make what we teach him relevant and meaningful to him and to the way he sees and processes the world. He is clever and keen, eager and willing.  This means our responsibility is great.  We have introduced a new tactile language. He caught on to it exceedingly quick.  We have devised new curriculum for him at school; involving self care skills in the kitchen, community, hygiene and independent travel.  We try to bring learning to him in a tactile, concrete, relevant way.  This is a constant challenge; it takes creativity and out of the box thinking, it takes a team that is committed and on the same page.  It continues to be a work in progress.

For me the year has been full and rich; full of hard work, disappointment, pain, sadness, impotence…but rich in love, joy, pride, tears, and exhilaration.  I am learning that often there is no solution, there is only the struggle and ability to let things be.  “It is what it is” often runs through my mind.  I won’t always be able to help him or know what is wrong, but he can always know that I’m here, I’m loving him, and I’m trying. I am learning that when I do find a solution, I am tenacious and dedicated and have endless energy towards ensuring it is implemented.  I am appreciating the amazing sense of accomplishment that comes with a job well done.  I am learning to accept work that doesn’t get done; the books on autism which still lay unread and unstudied on the shelf, the learning activities yet to be tried, the ideas yet to be implemented.  I am learning to accept that on many days it is not about learning together; but about being together, enjoying the present for what it is, simply taking the smiles and the closeness as a gift unto itself.

 

This year in pictures…

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And I left my tears there

Some days the tears come, and you let them spill, and you hope for renewed strength and grace…today was one of those days, and I was lucky to have friends with me.

Today a sheep witnessed my tears

It stopped its grazing and raised its head

its ears perked up and its eyes found mine

We stood still

 

Today the sky witnessed my tears

Its winds surrounding me

Its rain falling round me

Its waters merged with mine

 

Today a mare witnessed my tears

White coat like an angel

Big eyes soft and inquiring

Beautiful figure of strength and grace

 

Today a tree witnessed my tears

Strong trunk rising before me

Long branches as a canopy

Dying leaves falling beside me

 

Today nature witnessed my tears

Peaceful in its constant motion

Quiet in its deafening roar

Today nature witnessed my tears…

And I left my tears there