That’s a lot of steps.

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Yesterday I started writing a blog post about missed opportunities.  I started the day sitting here at my computer watching my Facebook feed come alive with posts about a disability and theology conference I would have loved to attend.  But with my primary caregiver and my husband out of the country it just wasn’t possible.  Our unwritten rules regarding Matthew’s care simply don’t allow for the three decision-makers to be out of town, much less out of Canada, at the same time.  So I started the day with the slow burn of disappointment churning in my stomach.

 

Fortunately the day improved considerably.  My morning included coffee with two lovely ladies, and  I spent the rest of the day working on my dissertation and assisting with Matthew’s care.  I concluded the day by playing recreational soccer with some amazing women – we won our game for added good measure.  By the time I returned to my blog post in the evening the pit of disappointment in my stomach had largely dissolved and I didn’t have the desire to finish writing.  Don’t get me wrong I would still love to be at the conference, but by evening I had reminded myself that there will be other conferences and other opportunities.   By day’s end I had affirmed much of what I already know – that friends, community, meaningful work, and good old-fashioned fresh-air and exercise, go a long way in maintaining my mental health.

 

Several years ago I made an intentional decision to incorporate more exercise into my life. There was no denying the role physical activity played in managing the crushing stress of caregiving.  So these days I fill my weeks with soccer games, hiking, jogging, and trips to the gym mostly to do kickboxing or yoga.  I thought I was coordinated until tried yoga.  Let’s just say I have mastered the breathing-in-breathing-out part but not much else.  Soccer, in particular, provides 90 minutes where I think of nothing else beyond the game, the ball, and the women with whom I am playing.  It is an amazing form of respite.

 

Recently I needed to invest in a new fitness watch.  The Timex I had used for years while running fell apart.  Since the market has exploded with fitness trackers in recent years shopping for a watch turned out to be more difficult than I had originally thought.  As a runner who uses the approach of running for ten minutes and walking for one (repeatedly), I needed a watch that allowed for the programming of timed intervals.  I also wanted a device that tracked distance run.  But beyond those features I really didn’t care.  Things like time slept (apparently the Fitbit tells you this), steps taken, heart rate, movement reminders, and so on, were things I honestly didn’t care about.

 

Ultimately I purchased a Garmin since it had the two main features I needed – timed intervals and distance run (or hiked).  But like most things on the market it also provides more information than I actually need, most of which I won’t be bothered to track.  However I have found a few tidbits of information about my personal fitness that have been fun to learn. For example I now know that my resting heart rate averages below 60,  and has been known to drop to the forties. I know that the cardiac demands of hiking a hill and running a hill are fairly similar for me.  I know that on days I hike I knock off about 400% of what my watch tells is my daily step goal.  And I now know that Matthew’s morning care fulfills 30% of my daily watch-defined step goal.

 

I have always known Matthew’s morning care was a busy time.  But for the last few days I have made a mental note, for fun, to check my watch first thing in the morning and again around 8:30am as I am loading Matthew into the van for day program. I even avoided walking the dogs for a few days so my step count wasn’t artificially elevated. Matthew’s care begins just before 7:00am and continues at a fairly fast pace until we head out the door to day program.  There are meds to be administered, a continuous feed to begin, clothes to change, and so on.  Matthew is a fairly large young man so the idea that his care was physically demanding was not news to me.  But the idea that I complete 30% of the suggested daily step count in 90 minutes genuinely surprised me.  Apparently caregiving earns you lots of steps.  If anyone wants to save the price of a gym membership you are welcome to come do morning care with Matthew.

 

In the beginning……..

cropped-img_06971.jpgYesterday I had the great privilege to be part of a rich and dynamic gathering of people interested in discussing care, disability, and faith.  As part of that day I had the opportunity to share the early stages of my doctoral research exploring the interconnection between a mother and her child with disabilities.  During my presentation I talked a little bit about my own interconnection with Matthew.  So to begin the presentation I wanted an image that included Matthew and me.  Not easy when you are the one who is usually behind the camera.

 

I ended up choosing the above image because, for me, it is likely the very beginning of this deeply complex and porous relationship I have with my son.  But as the day progressed and presenters at times talked about care, personhood, life with disability, and the painful reality of euthanasia,  my mind kept wandering back to this image.  This image, for me, connects to so many of those challenges and issues.  This picture tells many stories.

 

This photograph was taken in the middle of the night several days after Matthew was born.  Matthew’s birth was complicated and involved both Matthew and I being ambulanced separately and at different times to a regional care facility about an hour away from our home.  When this picture was taken I was still an inpatient recovering from a traumatic labour and delivery.

 

It was about two in the morning and my mind refused to “turn off”.  While the days kept me busy with meetings about Matthew, the nights were times when my mind buzzed with the deeply concerning information my husband and I were receiving about our son.     Unable to sleep I finally decided to leave my own hospital ward and walk to the NICU where my son was on life support.  At this point I had been unable to hold or even touch Matthew.  His medical status was far too fragile; his seizures far too severe.  But in the quiet of the NICU night the nurse caring for Matthew decided that allowing me to hold my son would be good for both of us.  It took quite some time to secure the many tubes connected to my son’s body within the blankets and transfer Matthew to me.  Interestingly this is only one of two pictures of Matthew while on life support.  I didn’t want to remember these days so I refused to allow pictures.  The only other photo of my son on life support (below) is the one the medical transport team left with me before Matthew was rushed to MUMC.  To this day I am still traumatized by that photo.  Other women had their babies.  I had a grainy polaroid of an infant a city away.

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During yesterday’s conversations, both formally and informally, we explored the fact that babies with disabilities have their lives ended in utero, or at times shortly after birth.  In the image of Matthew and me, Matthew is on a drug called vecuronium.  This is a drug that paralyzes the body, including the diaphragm.  At the time it was the only way to manage his seizures and create the space for his body and brain to begin to heal from what was called a “catastrophic birth injury”.  What is significant about this is that if Matthew’s life support was turned off his death was inevitable.  This fact was made clear to us by the medical team.  And during these days we were repeatedly asked if we wished to discontinue his life support.  Indeed we were told that many parents chose this option when faced with the reality of raising a severely disabled child.  It was understandable and the team would not offer any judgment if we chose this option. My husband faltered during this time.  I can’t blame him.  A medical team was telling him his son was so complex that ending his life was an appropriate thing to consider. The idea that our son would never really “know” us as parents and would be unable to enter into relationships – as Matthew was described to us, was terrifying.  What is life without relationships?  How will I parent a child who cannot understand relationships?  However, thankfully,  at this stage of the story my mother bear was in full form.  Discontinuing Matthew’s life support was not something open to discussion – a fact that I made clear to the team during those early days.

 

To be clear there were days when I would later question that decision.  Black days when Matthew’s suffering seemed to challenge any suggestion of quality of life.   But to suggest that Matthew, or children with profound intellectual impairment,  do not enter into relationship is a dangerously ableist notion.  The idea that this is an idea presented in the NICU when making life and death decisions is troubling.  Matthew may not know I am his mother, but there is no doubt of a powerful relationship between us.  A relationship that is so deeply interconnected that there are times that my ability to differentiate between his suffering and my own, or his joy and my own, is impossible.  Further, to suggest that Matthew lives without relationships is ridiculous.  Matthew enjoys a broad range of  rich and mutually connected friendships.   Yes, Matthew’s relationships may require more facilitation than “traditional” friendships, and Matthew may ask his friends, and our broader community,  to think about friendship in new ways.  But that is one of the great gifts of a friendship with Matthew – you are opened up to new ways of being in relationship with others.

 

I had not thought about these early days in a long time.  It is amazing what one picture can do.

Waves of joy.

Yesterday my eldest son moved back home after completing his undergraduate degree.  He is home for only a week before heading up north where he will work all summer. In the fall  he will rejoin the household for a prolonged stay before pursuing graduate school a year or so down the road.  As he joked during his recent graduation ceremony he plans to become an excellent stay-at-home-son in the interim.

 

There is no doubt the dynamics of our home have changed with my son’s return.  With all three boys home – ages 17, 19, 21 – the house is messier, louder, busier, and we go through food at an alarming rate.  Within hours of Robert’s return friends were congregating in the basement to watch a movie and soak in our hot tub.  When Robert is around the TV is usually tuned to a sports channel so he doesn’t miss any scores.   This morning I switched back to our large coffee maker since my eldest now is a coffee drinker. While he was away I was the only morning coffee person in our home so a two-cup carafe was fine.   By mornings’ end I had scrambled eggs, flipped pancakes, mixed smoothies, sliced fruit, prepared oatmeal, and cooked bacon.  I now need to go grocery shopping.  At Costco.  Because they have LARGE sizes.  And clean the kitchen.  I am worried this whole grocery shopping thing might become a daily event.

 

Our family is at that stage of life where the boys come and go.  We have a shared care arrangement with Matthew’s group home so he is to and fro our home on a regular basis.  Matthew is an integral party of the pandemonium in our home.  The other two boys are back and forth with camp commitments, travel, school, jobs, and outings.  I know that in a little over a year there is an excellent chance that all my boys may be spending more time away from home than at home.  My youngest will be heading off to university for the first time and my eldest will likely be heading off to some form of graduate school.  Both boys will be up north at camp this summer for stretches of time – with my eldest gone for four months.  My youngest is part of a European exchange prior to leaving for camp.  All this is a sign of things to come. I know that it isn’t too far off in the distance that there will be a time when my nest is rather empty.

 

But for the moment my nest is bursting with busy-ness, friends, sports, hockey sticks, running gear, gym bags, basketballs, noise, clutter, and very, very empty kitchen cupboards.  And I am happy.  So very, very happy.

 

 

 

 

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.

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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.

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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.