Imago Dei: For we are Glorious.

This past weekend I attended two films with my youngest son and husband. On Friday, like the rest of the world, we attended one of the first showings of The Black Panther.  On Saturday we caught one of the final showings of The Greatest Showman. My youngest is a huge musical theatre buff and he wanted to see Showman one more time on the big screen before it was relegated to Netflix and Movies on Demand.

 

This past week I have been thinking a lot about imago Dei. For those non-theology folk imago Dei means the image of God.   There is some pretty wonderful stuff written about the imago Dei, and while most theologians agree that the notion of the imago Dei is not primarily focused on the physical body, the fact that most images of God have been male and able bodied has posed a challenge for women, people with disabilities, and other diverse bodies.

 

At first blush the two films I viewed seem to have little in common The Black Panther is a Marvel superhero film with amazing CGI and intense battle scenes, while The Greatest Showman is the story of P.T. Barnum and is filled with incredible music and jazzy dance numbers.  They both were fantastically entertaining, but for different reasons.

 

But upon further reflection both films, at their core, are about bodies that through the ages have rarely  been viewed as the imago Dei.   The Black Panther focuses on the fictional country of Wakonda where the citizens of a Black country live isolated, peaceful, and prosperous lives unaware of the struggles and oppression of their global Black brothers and sisters. Part of the story line explores the country’s existential struggle about whether to share their riches with the rest of the world. The Greatest Showman shares the story of the rejection and public humiliation of many of the “oddities of nature” that were featured in Barnum’s circus.   Both movies explore the oppression and empowerment of diverse bodies.

 

Which brings me back to the imago Dei. Historically our colonizing images of God have dictated which bodies are seen as worthy and favoured within society, as well as those bodies that fall outside of some humanly created Divine norm. As I have been preparing for an upcoming class exploring the topic of the imago Dei I have been largely focused on disabled bodies. In particular I have been reflecting upon Nancy Eisland’s liberating assertion that an embodied God occupies a power wheelchair.  Similarly there are many wonderful authors and artists who have offered other diverse images of Jesus, God, Mary, and so on.

 

But the two movies of my weekend reminded me that it isn’t enough to think of a Black God or a Disabled God. We need to also think of a God covered with tattoos, or a transgendered God, or God as a bearded lady, or God as conjoined twins. In short we need to understand that our images of God are limited by our human imagination and that the imago Dei is as infinite and diverse as the Divinely creative diversity of every body that has lived, or that may live.

 

One of the most powerful scenes of the movie is when P.T Barnum denies his performers entrance to a post-opera cocktail party with members of New York society. Embarrassed by their unique bodies he sends them away. But the bearded lady, who in the movie does not have a name beyond the description of her face, marches through the party followed by the diverse bodies of her fellow performers. Through the song she affirms her identity as well as the power, beauty, and dignity of her body, as well as the bodies of her friends marching behind her.   While the lyrics of the entire song are powerful, one line caught my attention; “for we are glorious”.    It occurred to me that those four words in particular captured the imago Dei.   All bodies are the imago Dei and all are glorious.

Choosing Matthew.

I love teaching.  Teaching more than anything I do forces me to keep learning.  Sure being a doctoral student means I read and write and think a whole lot.  Or at least I am supposed to be doing those things.  But spending time with students who ask challenging and thought provoking questions keeps me on my toes and ensures that I never stop unpacking and critiquing ideas – both mine and others’.  Because the students ask hard questions I am constantly amazed and usually pleasantly surprised by how much students teach me.

 

Today I was asked one of those hard questions.  These days I teach an undergraduate course exploring issues related to suffering, disability,  and faith.  The course is called ‘Questioning Ability’ and each week the students and I unpack a question related to one of those issues.  Today’s question explored how and why we conflate disability and suffering.  And while I don’t talk a whole lot about my journey parenting Matthew in class, the students know I have a child with complex and significant disabilities.

 

During today’s discussion it was noted that life support for very disabled or ill infants can be legally discontinued while in the NICU in the name of ‘mercy’, but that Robert Latimer went to prison after killing his daughter Tracy despite the the fact that he was utterly convinced Tracy was suffering.  It was not lost on the class that the life of an infant in the NICU could be, and often is, ended simply on the notion of anticipated suffering, while Latimer’s response to his daughter’s confirmed suffering was met with a very different response by Canadian law.   It was an excellent distinction I thought.

 

One student raised her hand during this discussion and asked whether I would be willing to comment on our decision to NOT discontinue Matthew’s life support while he was in the NICU – if it wasn’t too personal a question.  After a moment’s pause I decided to answer because I felt sharing a bit of our story would add to the educational conversation by adding an example of a lived-experience to a hypothetical discussion.  My answer also drew upon some of the theological and ethical concepts we had been studying (noted in brackets for those who are interested), but in a practical, real-world way.

 

We chose to embark on our journey with Matthew for three very clear reasons, though while in the NICU I would not have been able to articulate those reasons so succinctly.  I just knew that discontinuing Matthew’s life support was unimaginable.

First we were, and are, utterly convinced of Matthew’s personhood regardless of ability or intellectual capacity (Singer, Fletcher).  My husband and I firmly believe that Matthew’s story, which is the foundation of his personhood,  began at birth and will continue to  his death (Hauerwas).  And we believe that Matthew’s story matters.  What doesn’t matter is  that Matthew’s story will not include such conventional milestones as degrees, marriage, children, or employment.  What does matter is that Matthew is a vital member of our family and community and that his story is an essential part of our collective stories (Hauerwas, Vanier, Nouwen).  And that without his story our stories would somehow be lacking.  And while I am not sure I would have been able to articulate this rationale 19 years ago I knew that if I chose a life without Matthew then my journey would have a huge, gaping hole.

Second we chose to continue on this journey because I wasn’t afraid of disability.  At the time of our decision I was a trained occupational therapist.  I had spent years learning to nurture the potential and quality of life for people living with disabilities.  I firmly believed (and believe) that disability and suffering are NOT the same thing.  Disability can lead to suffering, but it is not a given.  Rather, suffering is a fact of life for all of us regardless of ability (again Hauerwas, but also highlights points by Frankl, Soelle we were studying).  The idea of parenting a child with a disability was something I felt that I had the training to handle.  I was wrong, but that is another story and something I had to learn along the way.

But most important I chose to continue on this journey because I had hope.  At the time of our decision we had no real knowledge of what Matthew’s life, or our lives, would look like.  The physician’s reports were often ambivalent.  Some doctors offered dire predictions.  Others offered a more hopeful outlook.  Given the extent of Matthew’s brain injury I now wonder about some of the rosier predictions we were given.  They weren’t realistic.  But at the time I clung to those optimistic predictions like a a drowning person would clutch a lifeline.  For years the hope that Matthew would defy the odds and avoid serious disability were what kept me going.  I look back now and label that thinking denial, but it worked.  By the time I had figured out that Matthew wouldn’t walk, or talk, or sit, or eat, or read, or call me “mom”, none of that stuff mattered.  Because Matthew was a vibrant, wonderful, and valued member of our family and our community because he WAS and because he IS.  Full stop.

A mother’s response to personhood and suffering.

26994049_10159954347485247_2329516261228451543_n

I have spent the last week or so preparing undergraduate lectures tackling such profound issues as suffering, disability, and personhood.  It’s been a wonderful opportunity and listening to the ideas of the millennials in class has been thought provoking to say the least.

 

Last week my lecture focused on the issue of personhood.  As in, who is a person?  And of course the reason we ask these questions is because we tend to care for people.  We don’t “kill” people.  If a being has been deemed to be “not a person” the rules change and things get heated pretty quickly.  Think abortion.  Think euthanasia.

 

You’d think it was a straight-forward question, who is a person.  But when you let theologians and ethicists into the room the conversation gets contentious and complicated pretty quickly.   We have theologians who argue that personhood is created by stories and by communities.  We have theologians who link personhood to the Divine story and our human role in this Story.  And we have medical ethicists who argue that some basic level of cognition is required.  Indeed Princeton utilitarian Peter Singer argues that it may be morally correct to kill profoundly disabled infants in part because of their (expected) lack of cognition. I have always been struck by the fact that based on Singer’s criteria my dog may well qualify as a person while my 19 year-old son would very clearly not.

 

In class it is my job to orient students to a range of opinions and encourage them to sift through the arguments vis a vis their own personal values.  It is NOT my job to tell them which ideas I personally like and whether I agree with a particular view or not.   So the students (unless they read this blog!) don’t know that I really don’t care for Singer’s arguments.  As an academic I see his point and I “get” where he’s coming from. But as a mother I don’t like what he says.  My son is a person despite the fact that he would fail any form of cognition based testing for personhood.

 

As an aside, the first time I was introduced to the work of Peter Singer a good friend said he wanted to be in the room when I read Singer’s thinking about disabled children.  He claimed he had never seen a head explode and he figured mine would.

 

Singer talks about the fact that perhaps we should kill some severely disabled infants in the NICU.  And the academic in me agrees that he makes a compelling argument.  In this case Singer’s argument is based more on suffering – which he links to future intellect, to be sure- but in the NICU Singer’s point is that since active euthanasia is verboten, passive euthanasia is quietly practiced.  Passive euthanasia means that we withhold treatment/food/fluids to allow an infant to die and Singer (rightly) argues that this approach may not be the most humane way to cause death.  And he is clear that this happens all the time in the NICU. And again he’s correct.  It happens All. The. Time.  Before Matthew was five days old we had been asked repeatedly if we wished to discontinue life support.  Health professionals were very clear that this was a viable option chosen by many parents.  They were also very clear that no judgment would be offered if we chose to allow Matthew to die.  At this point in Matthew’s recovery his death was assured if we discontinued intervention.

 

In contrast to Singer, many theologians argue that personhood is about our stories and our communities.  Even if one has a significant cognitive impairment like my son one can often live a richly storied life amid a loving community.  L’Arche communities are a global example of this life.  This is a conceptualization of personhood that resonates for me.  Matthew’s life is rich in stories and rich in community.  His stories are expressed in dance with his colour guard and in song with his choir.   His stories are told by his brothers and his parents, and his caregivers and his friends since he does not have the words to tell his own stories.  But he has stories.  Lots and lots of stories.  The expression is just different and different isn’t a bad thing.  And if we had chosen to end his life shortly after his birth we all would have missed out on these stories.

 

If we base our personhood test exclusively on something like IQ we are profoundly limiting what it means to be human.  And we are profoundly limiting how joy is defined.  Since Singer is a utilitarian this last bit is important since utilitarians, simply put, are all about maximizing pleasure while limiting pain.  But both pain and pleasure are essential aspects of our humanity and if I have learned anything as Matthew’s mother I have learned that joy and pain can co-exist in the same breath.  It is a paradox to be sure, but it is also the stuff of life.  I am not suggesting that we valorize suffering.  Anyone who knows me knows I would never suggest that.  But we cannot be afraid of suffering since to be afraid of suffering means to be afraid of living – which is what people do.  And living amid suffering, while challenging,  is possible.

 

I have  often wondered if Singer has ever spent any meaningful time with a close someone who has a severe intellectual disability.  And if he did whether it would change his thinking?  Because I think what we learn most when reading Singer’s work is not what defines a person, but what Singer values in life above all, which is intellect.   For Singer not being intelligent in a classical sense is synonymous with suffering and makes life undesirable.

 

Anyone who knows me knows I resist turning suffering and difficult journeys into Disney movies.  And in particular I reject turning my son’s suffering into a triumphant narrative – that is unfair to Matthew and minimizes how painful (literally) parts of his story have been.  But I do know that Matthew, in his own way, offers clear messages about what it means to be a person and that personhood includes suffering.  Matthew is also clear that personhood does not include a high IQ.  What also defines our personhood is how we respond to suffering, and there is a great deal we can do to mitigate suffering that doesn’t involve killing people.

 

 

An angel in the house. And the part we often don’t talk about.

IMG_0127

Nine years ago our caregiver, Carol, joined our family.   When we hired Carol we had reached a point in our parenting of Matthew that I could no longer sustain his care independently.  We had some weekly support from homecare services but that support was limited.  To complicate matters Matthew needed significant medical care during the night so I was chronically sleep deprived.  We eventually switched to full-time night nursing to allow me to cope but this meant that all our homecare hours were consumed by this night care.  We reportedly maxed out the government allotment for homecare services.  And yet even with maximal support I was still only  hanging on by my finger nails.  Indeed some months we would run short of nursing hours so we had a standing arrangement with a local children’s respite home that Matthew would go there for a few days each month to bridge the gap in funded care.  Thankfully it was understood that I could simply not provide 24-hour continuous care.  Those years are a blur and nothing could compel me to re-live them.

 

At this point in our journey there  were no homecare hours left for daytime care.  That meant that appointments, grocery trips, outings, extracurriculars for our other boys, all of it, became a logistical dance. While I was loathe to admit it, Matthew’s care had progressed to a point that one caregiver, even a fully dedicated one, could no longer handle it solo.  If we were to keep Matthew living at home amid a healthy family unit we needed help.

 

Enter Carol.  She was, and is, a saint who saved my life.  Carol quickly mastered the nuances of Matthew’s care.  But more than that she was (is) devoted to him.  She took him on walks.  Read stories endlessly.  She baked cookies with Matthew -cookies my growing teens, Robert and David, inhaled.  Her care allowed me to finally have time for myself.  I could catch up on my sleep and spend time with my other boys.  I even went on dates with my husband from time to time.  Eventually I went back to school to try to pursue a long dreamed-of graduate degree.  There aren’t enough words in the English language to express my gratitude for Carol’s support.

 

But there is something about this story that is important to note when discussing extreme caregiving.  It’s a part of the story we usually don’t talk about.  We hired Carol with funds from our family budget.  Funding a full-time caregiver is not an insignificant cost and we were lucky we could afford to do so.   The government did not provide the sort of support we would need to allow our family to thrive.  Indeed we received just enough to support to avoid catastrophe.  Equally important to the conversation was that we hired Carol after I had left the work force and before Matthew won a malpractice award (that now funds his care).  Most families simply cannot  absorb the double-whammy of a loss of a family income while also funding full-time skilled care.  We were just unbelievably fortunate that my husband has an excellent, well-paid job with generous medical benefits.

 

Ask any extreme caregiver and they will likely tell you that they are stretched to the extreme with little meaningful assistance from government homecare supports.  It isn’t that there aren’t supports.  They exist.  It is only that for extreme caregivers the offered support is usually a drop in the proverbial bucket.  Throw in the relative absence of adequate long-term housing options for both paediatric and adult populations and you have a troubling scenario involving maxed out caregivers with few options.  Things like quality of life go out the window and are often replaced by a goal of sheer survival.  It is no way to live.  Indeed I would argue it isn’t really living, it is often barely surviving.  And one needs to remember that for a family with a young, complex child there is seemingly no foreseeable end to the surviving.

 

We can’t talk about extreme caregiving without noting that raising a kid like Matthew is expensive.  Yes, primary care is funded in Canada.  Thank goodness.  I cannot imagine raising Matthew south of the border.  But even with funded primary care the costs are massive.  Until recently paediatric medications weren’t covered.   We had years where Matthew’s pharmaceutical costs exceeded $40,000.   Throw in the recurring costs of  incontinence supplies, feeding tube supplies, syringes, and so on, as well as sporadic costs such as personal care equipment, transfer equipment, and home modifications, and the costs of caring for a child like my son are staggering.   Statistically most families with a profoundly disabled child have one parent leave the work force so these costs are subsequently shouldered by one income.

 

In Ontario income thresholds to qualify for supports are fairly low.  Many middle-income families are excluded.  Funding for some equipment and drug costs is available but the administration effort to secure such funds is onerous.   There are reams of forms to complete and professional signatures to obtain – at times for only a fraction of the cost of an item, and only after the family has funded the item out of pocket.  The strain placed upon an already overextended parent – emotionally, physically, financially – can be overwhelming.  Even when your child has a permanent disability forms often need to be re-completed every few years.  For ongoing expenses such as diapers or feeding tube supplies parents are required to keep every receipt to demonstrate that the funds are used for approved costs.   There is a sense of distrust – that parents might use the money elsewhere – and audits happen randomly.  I can remember once being audited for incontinence costs.  The annual amount provided by the Ministry was $750 -nothing close to the true cost of Matthew’s diapers/wipes/creams/enemas.  But yet I had to provide an accounting of every penny spent on incontinence products that calendar year even though the cost easily exceeded the provided funds.

 

The upshot of all of this is that I am lucky.  I am lucky that my husband’s income has meant that we have never had to worry about paying the mortgage and buying groceries.  I have never had to struggle with whether I could afford to purchase my son’s medications.  I have never had to watch debt mount simply to ensure that my son’s basic costs were covered.  And not only could we afford all the necessary supplies for Matthew, but we could also afford to hire an angel in disguise so that our family could not only survive those peak caregivers years, but could thrive.

For  extreme caregiving families to survive, much less thrive, the need for increased funding and support is real.

 

 

 

Community Saves Lives

 

20277_454995200246_6282168_n-2

I am not sure if it has been a case of the winter blahs, or simply that I have been very  busy, but lately I haven’t felt much like writing.  Which is weird.  Writing is often how I make sense of my life. I am not sure if that means that my life, of late, makes sense. Or it doesn’t.  =)

But today this video jumped off my Facebook feed and made me take notice.

 

The gist is that human connection is a greater predictor of longevity than other things like exercise, weight, or even if you’re a smoker.  This human connection includes your close relationships, but even more significantly, includes casual social interaction with people in your day-to-day life.

And what immediately struck me is that people with disabilities and their caregivers often live very socially isolated lives.  Like really socially isolated lives.  Caregiving, in particular, is very socially isolating.  During my peak caregiving years it was not uncommon for me to go entire days without any significant adult conversation.  I was fortunate to have two able-bodied children who kept me connected to a community through their activities.  And to a certain extent I had some human contact with the rotation of staff in my home.  But I also spent huge amounts of time alone watching others live seemingly busy and rich lives.  I knew people cared about me and that helped immensely.  But I was often still very alone.   In many ways I am grateful for the emergence of social media during those years.  Things like Facebook and Wondercafe (the United Church of Canada discussion site) formed the cornerstone of my social life and nurtured friendships that in many cases went from virtual to real.

Research study after research study indicates that one of the most deleterious effects of caregiving is that it isolates.  The other burdens of caregiving – sleep deprivation, the staggering workload, the constant worry you feel for your loved one – are often significantly mitigated if one has a caring community.  It isn’t just because people are more likely to help if they have insight into your daily life, though there is that.  It is because if you have community you know you’re not alone.  And those little bits of human contact, as the TED talk shows, are lifelines.

Yesterday during a meeting I attended the idea of intentional community emerged.  Intentional community is exactly what it sounds like.  It is the notion that one creates community in a deliberate manner – either for themselves, or for someone they care about.  It was noted that often people expect community to “just happen” – which is a huge problem when you are an isolated caregiver.  Community often doesn’t “just happen”.  Which means that one needs to actively try to create community.  Historically things like attending church often nurtured community.  But these days less so.  And finding the time and energy to create a knitting club, or a book club, or a coffee gathering is hard.  Particularly if you’re swamped with caregiving duties.

 

So if you want to help a caregiver reach out to them.  Invite them to activities. Call them. Drop by with muffins.  And when they don’t have the time to accept your invitation call them again.  Send an email.  Ask them about their day.  It is okay that you can’t help with their caregiving duties.  It’s cool that you don’t know the front end of a feeding tube from the back end.  What matters is that you’re their friend and that you reach out.  And perhaps even more important, you keep the option of their reaching out to you always available.

Being a friend can be hard work. And it matters.  More than we thought perhaps.

Rediscovering my ten year-old self.

IMG_20171121_0858044-2

Until a few days ago I had never owned a pair of Converse sneakers. In the last year or so I had decided I would like a pair but was uncertain if they were the sort of thing a fifty-year old woman would wear.  While in Florida recently I fell in love with a hot-pink pair of Converse shoes, purchased them, and wore them continuously for the rest of my holiday.   But what really surprised me was the trip down memory lane these shoes initiated.

 

When I was ten years old classic Converse sneakers were all the rage. My best friend, also named Laura, wore her black Converse sneakers every day. I remember her mother talking about how expensive the shoes were, and I innocently quipped that I didn’t have Converse shoes because my mother believed that less expensive sneakers would wear out just as quickly and were therefore more practical. (My social skills have improved. I think).   This frugality made total sense to me and I didn’t lament my lack of Converse clad feet in any way. In fact I liked the canvas Zellers-style sneakers I wore. They were designed to look like jeans – complete with a braided trim around the ankle to look like a belt, as well as a pocket on the side of the shoe. When I needed a larger size I was thrilled to find these sneakers in my new size.

 

 

As a ten year old I hadn’t yet clued into the social cues and mores that would dictate my life for decades to come. I preferred, and always wore, skirts and dresses – I actually still find skirts more comfortable than jeans. My birthday is in September and at this age my parents always encouraged me to use some of my gift money to purchase back-to-school clothing. In grade five I used the money to buy two dresses. I was perfectly content being who I was and was indifferent to the influence of my peers.

 

 

As is often the case for tween girls, things began to change in grade six when I was eleven. This was when the “mean-girls” began to flex their muscles and impose the social hierarchy that would govern our lives for years to come. At this stage of my life I was attending a school in the US and to this day I associate the rigid social stratification that I encountered as an American vs. Canadian “thing”. Though these days I know it likely has more to do with the ages that I moved between these two countries.

 

 

In grade six there was a cluster of very cool girls in my class. Their ringleader was Alyssa. To this day I can picture her petite frame, clad in skin-tight Jordache jeans, wedge shoes, and colourful velour blouses. She always had a comb in her back pocket, something that perplexed me because I had been taught combing one’s hair in public was rude. She, along with her fashionable group, read teen romance novels, liked boys, listened to pop-music, and were devotees of The Love Boat. I, on the other hand, continued to wear dresses, lived in a home where classical music was preferred, and watched Little House on the Prairie over Fantasy Island. While not openly forbidden, my parents frowned upon romance novels. I read a few Judy Blume books at school and found them more annoying than entertaining. The protagonists seemed silly and stupid. That year I read Dickens for a book report.

 

 

It didn’t take long for Alyssa and her posse to target me. I made it so easy and they pounced without mercy. As a coping strategy, that year I decided to buy my first pair of blue jeans with my birthday money. I was sure that this would get Alyssa off my back. I proudly walked into school one day sporting my new jeans and a velour sweater. I was sure I was the height of fashion and Alyssa, as a result, would leave me alone. Upon seeing me Alyssa grabbed my butt, spun me around, and reading my back-pocket loudly commented that my jeans were NOT Jordache. They weren’t even Levi’s. The jeans were in fact from a Sears catalogue. It had not occurred to me that the type of jeans I wore mattered. I thought any jeans would be fine. I had much to learn and Alyssa and her group were the self-appointed teachers.

 

 

By high school I had learned to blend in a bit more, but I was still clearly labeled a nerd and was firmly located at the bottom of the school’s hierarchy. However around this time I discovered I enjoyed sports. I surprised many, myself included, by making both the track team as well as the local travelling soccer team. As it turns out, sports would be both my salvation and my undoing. With sports I found a place where I fit in and was accepted for my contributions. I was valued for being strong and capable and it was empowering. In many ways it gave me the confidence to begin to challenge the bullying that had dominated my life. But in the rigid social hierarchy of the high-school I attended my athleticism also proved problematic.

 

 

At this age I was still attending school in the US where varsity letter jackets were an envied status symbol. To earn one a student had to not only make a varsity team, but contribute to the team’s success – usually by being a starter, scoring points/goals, or securing top three finishes at meets. Varsity jackets were usually the stuff of upper year students. They were rare among grade nine and ten students. By the end of grade nine I had earned enough points in track and field to earn a varsity letter. I was one of two girls in the grade to do so. Interestingly the other girl was an equally unlikely candidate according to our peers.  Her name was Alexis and she was a math genius who was tall and large and had huge hands that could hurl a javelin, disc, or shotput, a country mile.

 

 

I will never forget the first day I wore my varsity jacket to school. I might as well have painted a huge target on my back. The idea that a grade-nine nerd could earn a varsity jacket was too much for the jocks in my grade, still languishing on the benches of the junior varsity squads, to bear.   My ability to multi-task had challenged the social stratification of the school and my peers did not like the message. Not one bit. They made sure I knew about their disapproval. Much to my father’s reasonable disappointment, I stopped wearing the jacket to school. By now my ten-year old voice had been drowned out by the louder voices of my peers. I look back at my fifteen year-old self and I am saddened by my lack of confidence – by my willingness to allow bullies to rob me of my hard-won accomplishment. However I also know that I simply wanted to stop the jeers being directed at me – so my fifty year-old self cuts the teen some slack.

 

 

Like many women it has taken me many years of my adult life to rediscover that inner ten year-old who doesn’t give a damn about what people think. I also know that my experiences in high-school strongly influenced my decision to hand-pick a private school, known for valuing and encouraging the holistic development of teens, intentional community, and anti-bullying, for my boys. Like many middle-aged women, I am discovering how liberating it can be to once again live life on my own terms. I also celebrate and actively support the anti-bullying and girl-power initiatives of today. I wonder how they might have influenced my journey had they been prevalent when I was a tween and young teen.

 

And so I found myself giddy with happiness last week as I wore my new hot-pink Converse sneakers. I didn’t care if they were fashionable. I didn’t care if they were something a fifty year-old women ought to wear. I simply loved that they made me smile and I liked wearing them. It occurred to me as I laced them up that I had finally rediscovered my ten year-old self – the girl who was quite prepared to live life on her own terms, unbothered by the opinions of others.  I like to think she has become my role model.

 

Damn. I like middle age!

 

Oh, and my sixteen year-old son was thrilled to learn that I still had my varsity jacket.  He wanted to know if he could have it.

Left behind…..

IMG_1040Last week was really busy.  Wednesday evening I played soccer.  Thursday evening I attended a play with my youngest son and husband.  On Friday I ate my fill of spaghetti at our sons’ school’s annual spaghetti supper.  After dinner I watched our eldest play in the alumni basketball game.  On Sunday my husband and I shared soft baked pretzels while watching our local OHL team beat North Bay.  This upcoming weekend I will be away for an annual retreat of “special needs” moms.

 

There was a time in my caregiving journey where one of those outings in a six month period would have been a rare treat that required significant planning.  Multiple outings in the span of a few days were as rare as a winning lottery ticket.  It just didn’t happen.  EVER.   A weekend away usually required making a respite request at least four months in advance – so forget spontanaiety.   An evening outing required organizing a caregiver and planning for contingencies – which inevitably seemed to happen.  If I knew that I had a few activities on the horizon, say a weekend retreat AND a family wedding or gathering, I often had to choose between the two activities because of caregiving and respite restrictions. Remaining behind to manage Matthew’s care while others in my family attended events, and continued on with their lives, was a common theme.

 

 

I lived with these limitations for years.

 

While the first ten years of Matthew’s life was mostly a chaotic blur of caregiving and little else, there are a few significant memories that stand out.   One particular memory involves Canada Day fireworks.   We are fortunate to live walking distance from a fantastic local display of fireworks planned annually for July 1.  One particular Canada Day we had friends over for a barbecue and then planned to walk to the nearby open field that offered a great view of the fireworks.  As it turned out Matthew was having a lousy evening and as the evening progressed it became patently obvious that he was not going to be “up to” attending the fireworks.   So as dusk settled on our neighbourhood I watched our friends, my husband, and my eldest and youngest sons, head off to the fireworks.  I waved good-bye, walked back into the house, and burst into tears.  By the time the group returned a couple of hours later my pity party had ended. I had planted a smile on my face and was settled in the chair next to Matthew’s bed drinking tea and reading a book.  I don’t think the group ever knew how sad I was to miss the activity.

 

I don’t think it was missing the fireworks, per se, that really upset me as much as it felt like, once again, I was being left behind as I watched everyone else head off to have fun.  Feeling left behind was a common theme during that stretch of my life.  I often felt that everyone else in my world was heading out the door to live a full and adventurous life while I remained at home to provide care.   I lived with the chronic feeling that both the years, and many of life’s opportunities, were passing me by never to be recaptured.  While I loved Matthew and was devoted to his care, I struggled with regular feelings of resentment and almost constant feelings of isolation.  It wasn’t a fun time.

 

Which is why I found myself on Sunday reflecting on the relative busy-ness of my life as I drove home from the OHL hockey game.  This freedom to re-join a busy life is one of the great blessings that emerged as I was able to increasingly share Matthew’s care with others.  Our new model of shared care with a local group home allows Matthew to live a vibrant and busy life, while allowing me some of the same opportunities.

 

The radical restriction of caregivers’  lives is one of the concerns that I think requires attention moving forward as we think more and more about how to ensure people with disabilities are fully included in community.  While people with complex and severe disabilities live increasingly full and vibrant lives in the community, which is a wonderful and important development and I want nothing less for my son, we sometimes forget, that at times, inclusion comes at a very steep cost to their family caregivers who remain behind the scenes to facilitate that involvement.   There are moments that I worry, that for extreme caregivers like me,  it often becomes a sum zero game.  As my son’s involvement in community increased, mine correspondingly and significantly decreased.  I worry this is a common theme.

 

This isn’t okay.  We need strategies that not only promote the full inclusion of people living with disabilities in our communities, but corresponding strategies, supports, and resources to ensure that inclusion doesn’t come at the cost of a family caregiver’s isolation. This means that things like respite services, home care supports, community supports, and so on, are vital resources that need to be generously offered to people living with disabilities and their caregivers.  In cases of extreme caregiving I worry that caregivers will continue to be left behind as they wave good-bye to everyone else in their family.  It means that in these “left-behind” situations, we’re still failing at inclusion.  It just looks different.