When caregiving research intersects with Quebec’s ban on religious symbols.


These days I spend a lot of time thinking about the body.  In particular I am interested in the body as it relates to other bodies, such as the relationship between a caregiver and a care-recipient.  What fascinates me is this idea that the body may be a whole lot more complicated than what medicine and our old friend, Rene Descartes, might suggest.


For the most part we think of our bodies as what is contained by our skin.  Which is why, it would seem, Quebec’s ban on religious symbols for public sector employees allows religious tattoos, or dreadlocks, but not a hijab.  Religious symbols such as hair or tattoos, it is argued, are part of the body and therefore acceptable.  Interestingly, Quebec also offers a convenient loophole for the Christian practice of wearing a cross or crucifix under the clothing.  But if your religious symbol happens to be clothing, well then, you’ve got a problem.

But what if we extended our understanding of the body? Philosopher Maurice Merleau-Ponty, back in the 40s, argued that a white cane isn’t simply an object for someone with a visual impairment.  Rather, the white cane becomes a sensory appendage.  In other words, the white cane becomes part of the body.  Similarly disability activists remind us that their wheelchairs aren’t simply wheels, but are an essential, even intimate, part of their body.  You don’t touch someone’s wheelchair without their permission.  My son’s wheelchair, his feeding tube and pump – all these objects are more than just things, they are essential parts of his body and core to his identity as a young man who lives with disabilities.

I have been reading the work of postmodern feminists who argue that the body is a whole lot more complicated than modern medicine, or our everyday thinking, would have us believe.  These writers argue that the body is a complex arrangement that not only includes what is contained within our skin, but expands to include people, animals and objects beyond our skin.  Seeing eye dogs, caregivers, feeding pumps, cochlear implants, and even glasses, all become essential extensions of our bodies. Seeing eye dogs and their human partner engage in a wordless dance as they navigate the world.  Caregivers can often “read” the bodies of those they have provided long-term care for.   These extensions of our body beyond our body not only allow for people to navigate their daily lives, they are essential for our collective human flourishing.

Which brings me back to the Quebec ban.  While common Christian practices have a convenient loophole, the religious practice of wearing a head covering – yarmulke, hijab, turban – is banned.  But what if these garments are not simply clothing?  What if these garments, like a wheelchair or the cane of someone with a visual impairment, are essential extensions of the human body necessary for human flourishing?  What if my sister’s hijab is not a garment but part of her body?  Ultimately I will defer to the wisdom of my Muslim sisters to answer this question.  But I think it bears asking.  What if we think of religious symbols, not as clothing, but as essential parts of the human body?  In this case the Quebec ban becomes much more concerning.  Because then the Quebec ban is not placing regulations on apparel, but rather is blatantly discriminating against very particular bodies.


Valuing mothers.



I am not saying anything particularly profound when I write that society undervalues mothers and the work they do, particularly when it comes to extreme maternal caregivers of profoundly disabled children.   However this past week I had a stark lesson in the dollars and cents of how a mother is valued, or not.

Since Matthew is now over 18 years of age he is legally an adult.  As his parents we now need to go through a process that gives us the legal right to manage his money and make decisions on his behalf since he is unable to do so.  While stressful, I am aware that this process is an important part of providing the best care for my son.  What this has also meant, though, is that we have had to dust off the seven-year old legal judgement that the courts used to establish the financial amount of Matthew’s malpractice award.  We were advised this week that this judgement is legally enforceable.  This means that it is possible, though hopefully not likely, that the public guardian and trustee will argue that because I do not spend Matthew’s money the way a judge believed Matthew’s money should be used, my management of the fund will be called into question.  I like to believe the PG&T will look at the decisions we have made and discover quickly that I actually have a better sense of what is in Matthew’s best interests than a courtroom judge who authored a decision almost ten years ago.  But I also haven’t had the best experiences with the courts, so I worry.

But what has been eye-opening for me has been the re-reading of the legal judgement with new eyes.  When the almost 100 page judgement was released I obviously read it.  But at the time I was still too raw from the recent legal battles to really unpack what the judgement was saying.   At that time I was just relieved that the whole process was over and that we weren’t going to have to sell our house to pay legal bills.  There were things about the judgment that worried me, mostly that it consigned me to nighttime care for life,  but I just wanted to be done so I filed the judgment and carried on with life.

The thing about the judgement is that it offers, in cold hard numbers, some insight into how our society values mothers.  Or doesn’t.

Briefly, in the judgement  the judge decided that I would be required to provide Matthew’s overnight care 3 weeks out of 4 until Matthew died. By the appeal Matthew required full-time overnight nursing and Matthew’s legal team attempted to have this decision challenged – mostly because it was unfair to compel me to provide overnight care for life.  For the record, no one ever asked me if I wanted to work nights until my son died (it is assumed he will die before me).  As I understand it was also precedent setting to compel an adult to care for an adult and Matthew’s legal team worried about the impact of this decision moving forward.

What is particularly interesting, and troubling, is the arithmetic the judge used to value my care.  In authoring a judgement a judge must develop a formula to arrive at a dollar figure for the award.  To do this s/he estimates the cost of care and other necessary supports for the life of the individual, bearing in mind that the award will often mean the individual also loses access to many publicly funded supports.  In calculating Matthew’s amount, the judge decided that I would be responsible for 8 hours of night care but I would be compensated for two hours.  Further he valued my care as that of a personal support worker, even though I was performing activities that would fall within the jurisdiction of a nurse, and at the time I was an occupational therapist.  One could argue that compensating me based on the hourly wages of either of these two health professionals would have been more appropriate.  All other caregivers in the judgement were compensated commensurate with their experience and hours worked, only my time and rate of pay were modified.  Indeed even the Ontario tax payer was compensated fairly because part of Matthew’s award was immediately handed over to our public health care system to address the additional burden Matthew’s injuries placed on the medical system.

I will spare you the math I used to arrive at this number, but I figure that my work as a Matthew’s mother was valued at about 12% when compared to all other caregivers or labour provided.  Remember, I was to be compensated for a fraction of the hours worked, and then using a rate of pay that did not equal the skills and qualifications required to do the job.  This of course only addresses my overnight care.  The actual mothering and caregiving I was providing, and will provide for Matthew’s life, was not valued at all.


It isn’t the money that bothers me.  I could care less about the money.  Nor is it the fact that I am expected to care for my son for life.  I love all my children and their  best interests will always be my priorities. For life.  What I do find concerning is the message this judgment clearly conveys about how we value, or to be precise undervalue,  extreme caregiving mothers, and in turn how this lack of value is used and abused by our society.

The requirements heaped upon mothers who fall into the extreme caregiving category are staggering.  They demands are, and will always be, more than one human being can shoulder.  Resources in the form of funding, equipment, and additional caregiving support will always be essential, but are sadly rarely offered to the extent needed.  Because mothers are mothers and their work is undervalued, indeed they are often expected to sacrifice all, our society assumes they can shoulder these responsibilities without supports.  The unpaid, unseen, and undervalued work of mothers saves our society huge sums of money.  But yet these cost savings are borne on the shoulders of some of the most overwhelmed and overworked women in our communities whose labour is minimized.  It is a sad comment that the valuable labour that keeps the most vulnerable children in our province thriving is so undervalued.   And thanks to Matthew’s judgment I can now put a number on the (under) value of that labour.  Our highly skilled maternal labour, the stuff that keeps our kids alive and happy, is valued by the structures of our community at about 12% of other care providers.  Sobering.



Let’s talk about anger.



Every Saturday morning my husband and I head over to our local bagel shop for our weekly dose of carbs hot off the the wood fire.  Most weeks we read the Globe and Mail together often leading to a conversation about some hot-button news topic.  No surprise that this week the news item was Kavanagh and female anger.


The Globe had and excellent opinion piece exploring female anger, and in particular the challenges many women face expressing their anger in a patriarchal world that does not equate anger with femininity.  Oftentimes angry women are derided for being hysterical or hormonal even when their anger is  reasonable and well-expressed.  And unfortunately in a world where privilege and power are often stacked against women the only way to advocate can often involve anger.  The challenges for caregivers are even more pronounced.  Anger can be an understandable response for maternal caregivers embroiled in a system that ignores their hard-won expertise, at times leading to the continued suffering of their child.


Like most maternal caregivers I could tell many stories of a system that failed my son and earned my anger.  But one stands out.  Several years ago I brought Matthew to the ER at our regional children’s hospital.  By this point in Matthew’s life he was well known to the ER team.  Matthew’s very severe reflux had spiralled out of control.  He was regurgitating upwards to 14 times a day.  He was regularly vomiting blood.  And he was miserable.  Oh, was he miserable. He couldn’t keep food, water, or medications down at all. His aspiration risk was through the roof and he was monitored at all times, including during the night.  His pain was poorly controlled and he was unable to sleep. He fussed and screamed constantly.   I remember these days as nothing more than a constant attempt to find a way to make him comfortable.  We lamented that we measured his medical stability and pain free time  in minutes, and perhaps hours.  The idea of an entire day of a happy Matthew was inconceivable.  Conversations among his community based feeding and care team began to dance around a possible GJ tube (jejunal feeding tube), or even TPN (total parental nutrition via IV).  We regularly met with his health care team to discuss our concerns, but no forward movement seemed to occur.  Physicians were often unwilling to manage pain they did not understand until I gave them no other choice – so we listened to Matthew cry.  To say I was angry and frustrated would be an understatement.  I had been questioning the need for a fundoplication (sealing the stomach to prevent reflux) for years.  Doctors scoffed at my suggestion.  On one occasion I was told Matthew would have to “earn” a fundoplication by failing all other treatment options first.  My son was suffering and my concerns and suggestions were unheard.


One day I decided enough was enough. Like many other days Matthew was vomiting blood and crying.  So I packed Matthew into our accessible van with an overnight bag and drove to the now familiar ER.  When questioned by the team about why Matthew was “in the ER today”, I responded that we were here because I had “finally snapped”.  I told the team that  I was frustrated and angry about the system’s lack of response to my concerns and we were not leaving the hospital until an acceptable plan was developed to respond to Matthew’s wildly out of control reflux and chronic pain.  I was pissed and I wasn’t leaving.


Matthew was admitted to hospital and this admission led to a year long journey with a GJ tube – which failed miserably – and finally the hard-“earned” fundoplication I had been advocating for for years.  But what I learned later is that immediately after my “I snapped” comment a member of the medical team called Matthew’s case manager – someone who had worked with our family for years.  The case manager later told me that she was questioned extensively about my mental health and my ability to assess my son.  The case manager was told that the medical team was deeply concerned about my “I snapped” comment – suggesting to them that I was no longer coping and my care was consequently compromised.  I will be forever grateful to our CM because her response was reportedly “do you blame her?”.  She pointed out that I had been reasonably expressing concern about my son’s declining health and spiralling reflux for months.  She noted that Matthew’s pain seemed out of control and that he was failing to thrive – a concern noted and documented by the community homecare team at her end.  And she noted that my regularly voiced concerns were being ignored at Matthew’s great expense.  She suggested that rather than spending time focusing on my (in their opinion misplaced) anger and frustration, or my mental health, that the team might actually listen to me and try to figure out what was going on with my son.


To me this story illustrates the problem a deeply patriarchal system such as medicine or law has with women’s anger.  First off,  as a woman and mother I am not supposed to be angry, even in the face of a system that is failing my son.  I am supposed to walk into an ER and defer to the patriarchal system that interprets and manages my son’s body, even when that assessment goes against my “read” of my son’s health.  I am expected to ignore my maternal knowledge, unique and highly responsive to my son, and extend full decision making capacity to the medical establishment and their objective knowledge.  Sure, these days there is conversation about collaborative medicine, and at times it is practiced well, but I can tell many stories when physicians were loathe to include me as a peer in the conversation, with troubling outcomes.

In this example of Matthew and me in the emergency room, rather than listening to my concerns, exploring their role in the situation, and examining constructive responses, all of which involved working with me as an equal, the team immediately became defensive in response to my anger and a challenge, no matter how politely worded, to their authority.  Their first response was not to explore my concerns, but to call our case manager to express concern about an “emotional mother”.  Because in this situation it couldn’t possibly be that I, a deeply connected mother lacking a medical degree,  could be correct in my assessment of my son’s health when they had been missing the problem for months.  No, the problem was clearly that I was a hysterical woman and not coping.   For the record at no point was my behaviour out of control.  I was reasonable and polite throughout, though I was also assertive and clearly resolved to remain camped out in the ER until there was a plan to address my concerns.  In other words I held the system accountable.  It seems they didn’t like that.


Today’s article in the Globe reminded me of this situation in the ER.  I was reminded that anger and assertiveness in women, even controlled and politely worded anger, is often actively muted.  I was reminded that attempts to hold a patriarchal, power-based system accountable for their behaviour can lead to woman-blaming.   Women are socialized to be acquiescent, deferential, and even engage in self-blame, in situations where they have been abused, ignored, or mistreated.  Rather than exploring the cause of my anger, the first response by the medical establishment when called to be accountable was to place the reason for my anger squarely upon my shoulders.  That somehow I was no longer coping with the extraordinary caregiving demands heaped upon my shoulders, or that I was depressed, or anxious, or hysterical.  The problem was me, because it could not be “them”.

Starting over.


This is an exciting time in my life.  I have been an adult student for well over a decade. Years ago I decided to return to school to earn a second masters degree.   That degree segued to a PhD.  I am still working on that degree!
It wasn’t so much that I wanted another degree, or two, but that the academic work I was doing helped me address some of my own existential struggles about mothering and caregiving.  I often joke that my academic work has simply been a labour intensive and expensive form of therapy.


But after many, many years I am beginning to see the end of this journey.  If all goes well by this time next year I will have completed my (final!) degree, or be very close to defending.


I have spent most of my adult life being a caregiver and/or student.  I have spent most of that time being totally overwhelmed and struggling to sort out how I would juggle those two, often times competing, demands.  For long stretches of time I fear I did not do it well.   I could tell you about my second PhD comprehensive that was probably some of the worst writing that I have ever done.  It was a frustrating and deeply humbling experience that almost sent me packing.   To be fair my life was hell back then, but I refuse to make excuses.


So I find myself now looking a year ahead and thinking that for the first time in over two decades I could be neither a full-time student, nor a full-time caregiver/mother.  It is both an exciting thought, and absolutely terrifying.  After many years of never having enough hours in the day, or night, I find myself facing a future where I will need to learn new ways to fill my days.   My youngest will be leaving for university.  My eldest is an adult sorting out his next steps.  And Matthew now lives a shared-care life where his care is divided between our home and a group home.  Even when he is at home with me his care is well-supported by a complex team of caregivers and nurses leaving me with a fraction of the caregiving responsibilities I shouldered in the past.


So these days I find myself thinking about what is next.  And I know I should be excited.  And most days I am.  But there are moments when I simply feel daunted.  I am 50 and I am starting over.  Indeed there are moments that it doesn’t feel like I am starting over, but simply that I am starting.  In many ways I am in the same place as my 22-year old son  – trying to figure out what I am called to do and whether the world will support or hear that same calling.  And then there are periodic moments when I mourn lost opportunities.  I am not proud of those moments, because they can quickly resemble pity parties where I am saddened about what I didn’t get to do during the years I was caregiving, rather than focusing on my present-day life of immense privilege and opportunity.


I am aware that my “decision” to remain at home wasn’t a decision at all.  There was no other choice twenty years ago and to pretend there was is unfair to my younger self.  I need to remind myself of that every once in a while.  I also need to stop comparing myself to women who did not spend 20 years as an extreme caregiver.


I recently tried to sketch a tentative work plan for the next year.  I tend to do better when I impose some structure on my work, particularly because doctoral work is done largely in isolation.  At the top of the page my header reads “I make plans:  God laughs”.


And before you think this blog post is a total pity-party I will admit that I am also proud of my efforts.  I have registered for no fewer than three doctoral programs in my life. THREE!  At times I feel my insistence that I finish this damn degree borders on masochism.  That I should have read the writing on the wall long ago – that doctoral work and my life were incompatible.  But maybe they weren’t.  =) And I hope that in the end my unwillingness to throw in the towel, and even more so my willingness to talk about my never-ending PhD journey, will remind other middle-aged women out there that a new, very cool (!), chapter in life might just begin at 50.  Or 40.  Or 60.  Or wherever you find yourself today.  So be stubborn.  Be audacious. Don’t be afraid to tell the world you’re not done.


The mommy blame game.

This week I have been reading two excellent books exploring motherhood, caregiving, and disability – Lisa Freitag’s Extreme Caregiving: The Moral Work of Raising Children with Special Needs, and Gail Landsman’s Reconstructing Motherhood and Disability in the Age of  “Perfect” Babies.  If such topics interest you I would strongly recommend both books.  While both are academic books written by academics, they both are also very readable.


Both books tackle a number of key issues related to maternal caregiving.  For example, Freitag carefully unpacks the unrealistic expectations heaped upon mothers raising very complex children and explores medicine’s culpability.  She argues that the ability to save infants without seriously considering the challenges to parents and family creates complex ethical issues that have been largely ignored by the medical establishment.  It is no secret I agree with her.


Landsman opens with a discussion of the intense pressure placed upon women to “grow” the perfect baby and the resulting blame implicitly and explicitly launched at mothers who have a baby diagnosed with a disability.  Landsman, drawing upon extensive interviews with mothers, shares stories of mothers who critiqued every mouthful, decision, and action during their pregnancy, as well as their decisions during their child’s early years.  Mothers worried that it was something they had done that caused their child’s impairment.  Their guilt was palpable.  Both books critique the blame heaped upon mothers, first for birthing a child with a disability, and later for ultimately being unable to care for that child.


I can vividly remember many examples of  mommy blame launched in my direction.  It started in the NICU.  For the early days of Matthew’s hospital stay he remained on life support at MUMC.  But as he stabilized he was transferred to a “step-down” unit at a nearby, inner-city hospital.  It was there that I had my first experience with blame.  While at MUMC I regularly read Matthew’s medical chart.  Many specialists joked that they should just hand me a pen and noted there was a section for occupational therapists in the file.  I could write my contributions there.  The team understood that part of my coping involved trying to understand what was happening.  Reading a medical chart was part of that coping, particularly since I spoke fairly fluent medical-speak.  So when we arrived at the step-down unit I picked up Matthew’s chart and proceeded to begin reading the transfer note.  The nurse in the room freaked.  She indicated that under no circumstances could I read Matthew’s file.  This, of course, is not true and denying access could actually be grounds for professional misconduct for a regulated health professional.  She became incensed when I pointed this out.  She argued that mothers could NOT read the file and I would need a lawyer to obtain access.  She became really pissed off when I pointed to my lawyer husband.  What if I was an abuser and my infant’s injuries were caused by my actions, she demanded.  How could they effectively document their care if they worried I might read their words? We were barely into the second week of Matthew’s life and my hypothetical role in his injuries was already on the forefront of a nurse’s conscience.  The fact that my son had never been outside of an NICU at this point of his life, and that his injuries were actually caused by a physician, was an irony lost on the nurse.


Later as I struggled to breast feed my son who would eventually end up with a feeding tube I had a nurse tell me that me that not only could every baby nurse, but that nursing could change brain chemistry and structure!  Wasn’t neural plasticity a wonderful thing she asserted. It could create new pathways in an injured brain since the baby was so young and the brain not yet formed.  As an OT I knew what neural plasticity was, and I hoped like hell it would work its magic for my son as I struggled to get Matthew to latch.  I lived through weeks of breastfeeding hell before finally giving up and purchasing bottles.  I felt like an utter failure.  If every baby could breastfeed Matthew’s inability to do so must be my fault.  Because of my failure to breastfeed he would not experience this magical benefit of neural plasticity that might rewire his injured brain.  His lack of recovery could probably be linked to my inability to feed my son like every other “good” mother.  To this day I still harbour strong anger about this particular mommy blame game.


Over the years these messages have continued with well-meaning individuals offering advice that suggested that if I only changed a certain aspect of my parenting, caregiving, therapy regime, medical care, or faith/prayer life, Matthew would thrive (the fact that disability is seen as lack of thriving is fodder for another post).  The constant feedback that I somehow had/have the power to change Matthew’s profound and complex disabilities, or that I might have been the cause of his challenges, has been a regular part of my parenting journey, and even to this day periodically pops up.


The truth is that most parents are the reason their children with disabilities are living full, rich, and meaningful lives, rather than the cause of their child’s disability.   Life isn’t fair and sometimes things just happen.   It would be nice if these messages worked their way into our collective narrative.








Back-to-school Madness.

I am a morning person yet I hate mornings.


Today like many across the country our family returned to school. You’d think with only one child in his final year of high school that mornings would be fairly straight forward.  These days we are a family of adults, after all.  But yet this morning by about 7am I was ready to throw the towel in on the day and try again tomorrow.


The first contributor to our morning chaos is the fact that we have shifted our shared-care arrangement for Matthew.  In the past he, ostensibly, spent his weeks at the group home and alternating weekends at home with us.  While in theory this sounded wonderful it actually created a plethora of problems.  Organizing intermittent weekend care proved challenging.  I had many fantasies about mom and Matthew outings on weekends that he was often too tired to enjoy.  As a result I often spent time on my weekends at home unable to enjoy either family, or Matthew-driven, activities.   Since Matthew’s  many mid-week activities are organized in our neck of the woods he spent most weeknights at home.  As a result our evening caregiver was often running him back to his group home only to sleep.  It created a very fragmented care schedule that often led to communication breakdown that at times compromised Matthew’s care.   By the spring we had decided to shift our arrangement and as of today Matthew will spend weekdays at home and weekends at his group home.  Officially he has a full-time bed at the Lodge, and I expect someday he will actually occupy it full-time, but for the moment we just aren’t there yet and this strategy remains the best option for all of us.


These days I am only officially responsible for Matthew’s overnight care, and since he no longer requires nighttime tube feedings this task shouldn’t be too onerous.  The rest of his weekdays involve a finely tuned rotation of nursing, day program, and evening activities/support, and all this care allows me to have relatively uncluttered days to pursue my own interests.  To be sure this is a rare gift for parents responsible for complex care children of any age and something I do not take for granted.


So this morning should have been seamless.  It wasn’t.  I suppose it all started when I got out of the shower only to realize my 17-year old son had seconded my blow-dryer for his back-to-school morning preparations. He is a senior after all.   If you see me today that is why my hair is a right, hot mess.  And then the nurse walked through the doors at 7am and the dogs, having seemingly forgotten that we have nurses regularly, decided to announce to most of Waterloo that we had a visitor.  This might have been fine if my son and husband hadn’t started yelling at the dogs to quiet down, thus drowning out the dogs with their own voices.  The cacophony was impressive and was enough to make my inner introvert long for my now-empty summer cottage.  And then the nurse ran into the kitchen to let me know that the group home hadn’t sent home all of Matthew’s medications and in fact we were missing the most important one.  CRAP.  This conversation happened, of course, while my husband was trying to get my attention to talk about car-pooling kids to and from school today.  I could keep going, but you get the idea.


The upshot of all this is that while I no longer change Matthew diapers (while I actually I do – multiple times last night – bratty kid =)), or provide most of his direct care, I am still the chief decision maker and advocate for my now adult, complex care child.  My job description is clearly changing, but as Matthew’s mom I still have a fairly demanding job.

And I still hate mornings.


Forgiveness as Resistance


Last week I returned home from a protracted period of time at our cottage to a stack of mail.  I spent several minutes sorting junk mail from mail that required my immediate attention.  One letter was from our local hospital.  I absently wondered if Matthew had an upcoming clinic that I had forgotten about as I ripped open the envelope.  The opening lines asked me to think of a traumatic health event and to consider where I would turn for help.  Perhaps my loved one had a heart attack, or a child was in the hospital? In the second paragraph the author of the letter introduced himself.  He was the hospital’s chief of staff.  He was also the physician found negligent in my son’s birth and the cause of Matthew’s catastrophic injuries and subsequent multiple disabilities.


I am not a particularly emotional person.  I have done multiple “tours of duty” in the N/ICU and have had more end-of-life conversations that I wish to remember.  I am not someone who dissolves into tears as a rule, even during stressful moments.  But as I read the opening few lines of the above letter I started shaking.  I dropped the letter and walked out of the room.  By the time my husband arrived home from work I was inconsolable.  It seems that the combination of asking me to imagine a stressful health event followed by the introduction of the doctor who caused that event overwhelmed me and dragged me back to events that I generally prefer to forget.


There is no doubt that my caregiving journey has been exhausting and overwhelming and serves as the foundation and impetus for much of the work and writing I do these days.  But it is the legal journey that our family traversed over the first 13 years of Matthew’s life that has been, by far, the most traumatic experience of my life.  I don’t often talk about it beyond acknowledging that it happened.  Since the lawsuit is so important to my journey of forgiveness it might be worth sharing a bit of our story.


For reasons I won’t go into it was fairly clear early on that Matthew’s injuries were caused by a medical error.  A lawsuit was filed shortly after Matthew’s birth, but it would be over a decade before our family finally appeared in court.  I had been warned that a trial would be unbelievably awful but nothing prepared me for the experience.   I spent three months in a courtroom watching an elaborate and expensive chess game where the pawns were my son, my body, my life, our life’s savings and financial security, my parenting, and at times even my marriage.


I was the first witness called to the stand and spent a week there, most of it under cross examination.  When “under cross” one is in effect sequestered which means that under no circumstances can anyone discuss the trial, or its events, with the individual on the stand.  You could ask me if I wanted milk in my coffee, but not much beyond that.  After the first day “under cross” I cried the whole way home from the courtroom.  No one could speak to me.  My husband held my hand and said nothing.  I have never felt more alone.  Never.


During a trial it is understood that experts are “fair game” and will be questioned aggressively.   Mothers are generally treated with kid gloves.  Lawyers simply don’t score points with a judge or jury when harassing the mother of a profoundly disabled child. However, even the judge later described my cross-examination by opposing counsel as “vigorous”.  During cross-examination everything about my story was aggressively critiqued and challenged by the doctor’s lawyer.  My parenting, my body, my birth experience, my memory, my decisions, my advocacy for my son – EVERYTHING.  I was made to feel that I was inadequate. I was made to feel that I somehow could have single-handedly altered the events of my son’s birth, that the events were my fault – that somehow I was supposed to leap up out of the stirrups and rip the forceps from the physician’s hands before he prolapsed my son’s umbilical cord.  I was painted as a gold-digger who was pursuing a lawsuit not for the benefit of her profoundly disabled child, but for her own gain. I was portrayed as someone who was magnifying the disabilities and needs of her very complex child for self-serving purposes. Once I was no longer sequestered I learned that our legal team could not understand why I was pursued so assertively.  And fortunately the judge found my evidence credible rather than the suggestions of the opposing counsel. To this day I take some satisfaction that my story prevailed despite a lawyer’s vigorous attempts to paint me as a person I was not.   Forgiving the lawyer who cross-examined me required the most work.  And while I forgive her, I don’t think I could be in the same room as her to this day.

But it seemed that my cross-examination was only the beginning of the trauma.  I then spent the next three months hearing lawyers critique my body, my childbirth experience, my parenting, and many of my life decisions dispassionately – completely ignoring that the material for their exhaustive debate was my life story, and that I was in the room.  My pelvic architecture was critiqued.  My injuries sustained during childbirth were itemized in a detached manner.  A group of men spent considerable time talking about things like my episiotomy and how I might have felt about the damage to my body – all while I was in the room and unable to speak for myself.  I have never felt more powerless and voiceless.  We won the lawsuit, but the matter was appealed to the Ontario Court of Appeal.  We won there as well.  The doctor, our hospital’s current chief of staff, was found negligent. We were front page news for a day.   By this point I had spent some time working with a counsellor to forgive the physician involved in our story, but the lawsuit unraveled most of that work.  I learned that forgiveness is an ongoing effort.


So last week, as I read the form letter asking me to remember a traumatic event I was sprinted back to these events – of my son on life support, of years of isolated caregiving and sleep-deprivation, of sitting in a court room feeling mauled by both the legal and medical systems of our province – and I lost it.


But yet I refuse to be victimized by these events.  I have long understood the importance of forgiveness and I do not want the baggage associated with hate and anger.  I spent years working through my feelings about what happened.  Forgiveness for the physician was easier than forgiveness for the lawyers. That was probably the hardest work I have undertaken in my life and requires work to this day.  I can accept the fact that a physician made a mistake. He has never said he was sorry for what happened, and I do not expect an apology, but I accept that he was human and made a mistake.  I will admit that forgiveness for the lawyers representing the doctor was much harder work since their abuse of me felt much more intentional.


In the aftermath of the letter last week I spent a few short hours being returned to a place of hurt and anger. I was enraged that the physician has been allowed to carry on with his life unrepentant and even rewarded.  He is now chief of staff while I continue to struggle with the demands of caregiving and with ongoing doctoral work – an academic journey (granted in a different discipline) that I started long before the events of Matthew’s birth over 20 years ago. My life has felt like a journey of stutter-steps, and at times I have been made to feel a failure because I did not have the ability to juggle the many weighty demands tossed in my direction. As I read the letter I was angry that, once again, I must rise above the fray and be gracious, even superhuman, while other people in the story have been allowed to be fallible and human, and have been rewarded despite their foibles.  Forgiveness has not been gracious or easy.  It has been very, very hard work and an often an act of blind faith. But yet I get up every day and forgive the lawyers and doctor who had the power to change my son’s life, and my life, irretrievably.  I forgive the lawyer who spent considerable effort attempting to paint me as selfish, naive, hysterical, and incompetent.   I wish I could say that this forgiveness comes from a place of compassion and grace, but that wouldn’t be true.  For me forgiveness began with rage.  Forgiveness was, and has been, an act of resistance – an act of utter defiance. By forgiving the parties involved I deny them any further power to write my story.  With forgiveness I reclaim my life narrative and reclaim my voice and my power.  With forgiveness I deny my role as a victim and claim the title of survivor.   Forgiveness means that I have the final word.

That’s a lot of steps.



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.


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.