Since Matthew’s move to a group home last week I have spent a fair bit of time thinking about the notion of “being ready”.


The truth is, I was not ready for Matthew’s move to a living arrangement outside of our home.   We were perfectly happy with Matthew at home.  At this point of our journey raising Matthew we were coping well.  We had excellent nursing supports and generous access to respite.  I was still young enough, and healthy enough, to manage his complex and physically demanding care.  We had all the necessary equipment and supplies.  Matthew had been medically stable for over two years.  Things were good.  Indeed, the last two years were probably some of the most stable, least stressful, years of our journey with Matthew.


So why on earth would we we place Matthew in a local group home when we weren’t ready and things were going so well?  Because I know, through experience and observation, that this “coping” can vanish in a moment leaving families struggling and in crisis.  Personal illness or the illness of a family member, a sudden shift in nursing or personal care workers,  policy changes, funding changes, staff resignations, job loss – all of these can compromise the ability to care for a complex care child at home and/or spiral a family into crisis.  And I was worried that if I was in crisis I wouldn’t be able to make the best decisions about Matthew’s care.  It was inevitable that I was  going to have to let go someday, and I wanted to make sure, if I had the opportunity to do so,  I could work through Matthew’s transition when I had the time, energy, and optimism, to do it well.  This likely meant that I had to do so when a good opportunity presented itself, regardless of my readiness.


So why now?  Because a very wise mother of a complex child once told me that the best time to transition your child, if you have the opportunity,  is when it is developmentally appropriate to do so.  In other words, at roughly the age and stage of life when other young adults are transitioning to new living arrangements.  For us, we figured that would be somewhere between 18-22.


It often seems that parents of complex kids need a crisis – need to reach a place they simply CANNOT CARE – before they are often able to let go.  To complicate this scenario even further, the Ontario long-term care and housing situation is such that families often need to be not only “in crisis”, but “in extreme crisis”, before  placement might be realistically explored.  Our situation, where we can intentionally and gradually transition Matthew from home to group home, is rare, and I assure you we are grateful.   And even when families are in crisis it doesn’t mean that their loved one will be offered an ideal, or even appropriate, placement.  I could write a dozen blog posts about the housing crisis for young adults with complex disabilities in Ontario, and not even hit the tip of the iceberg.


Which is why we placed Matthew at a time when, honestly, it feels premature for me to let go, but is age appropriate for Matthew to move.


I was so not ready for this move. Truth be told, without a crisis I would likely never be truly ready.  So rationally I knew the fact that I wasn’t ready was irrelevant.  I knew I wanted to have the time and energy to invest in making Matthew’s transition as smooth and as healthy as possible, which meant that I had to do it when I wasn’t ready to let him go (ergo I wasn’t in crisis).


And really, what does being ready look like?  When my eldest left for university three years ago I wasn’t ready to let him go.  After all he was only 17, and had yet to develop all sorts of independent living skills in my maternal opinion.    But HE was ready to go and was prepared to develop necessary life skills as he needed along the way.  When any of us left home for university, college, or jobs, were any of us truly ready for the transition, or did we figure it out as we went along while our nervous parents watched in the wings?    We are often asked to let go before we are ready.  Indeed, it seems a fundamental part of parenting.


I often remind myself that Matthew is almost 19, and were he able-bodied I would have likely already moved him into a university dorm, whether I was ready to let him go or not.  And similar to the situation with his older brother, whether I am ready to let him go or not, it is my job to let him go and to then figure out what this life of parenting adult children, regardless of ability, looks like.





Yesterday my day started like any other.  I walked the dog, made coffee, and tossed a load of laundry, left by our overnight caregiver, into the washing machine.   I chatted with our morning nurse, and later in the morning, had coffee with friends – all of whom are moms of kids with complex disabilities.  In the afternoon I worked away at the proposal for my doctoral research.  Last evening I attended a meeting at my son’s school to learn about international trip opportunities for senior students.  My youngest is applying to be part of the European exchange and he’s pretty stoked.  In short, it was a day a lot like any other day in my suburban, extreme caregiving existence.


Except it wasn’t.  Yesterday marked the day that Matthew moved to a group home.


Because Matthew has been spending time at this group home for respite he already had a stash of clothing and supplies at the home.  Other than packing meds, we didn’t need to spend a lot of time yesterday moving him or his belongings.  Over the next month or so I imagine that we will spend some time making his bedroom more “him”, but yesterday Matthew was simply picked up from his day program, and instead of coming home he went to his group home.


People keep asking me how I feel. The truth?  I don’t know.  Right now I seem to be in that initial shock stage of grief.  At least that is the stage I learned about years ago in undergrad.  The stages of grief may well have been modified by now!   There is a sense of not feeling anything at all.  I can recite all sorts of rational reasons why this move is the the good and right thing to do at this stage of our journey with Matthew.   And honestly, that is what I have been doing when people ask me how I feel.  My guess is there will probably be a blog post about group home placements, transitions, and all that stuff, not far off in the future.  You all can look forward to that!


But feeling something?  Nope.  I don’t seem capable of that today.


One of the challenges of caregiving is that care providers spend a great deal of their time doing repetitive, unseen, physically demanding, and at times thankless, work.  Caregiving can start to feel like a hamster wheel existence of feeding, diapering, medical and physical care, and so on, where you NEVER, EVER finish work.  Caregivers provide this care because they love their family member.  After all, care isn’t just an active verb, it is a profound feeling as well.  But that doesn’t mean that the days aren’t exhausting, and often mind-numbingly, never-endingly repetitive.


One of the challenges I have struggled with is that my days often provide(d) no sense of a job well done.  We all, at some point or another, need some positive feedback in our life.  Getting up and tackling a demanding task is easier, if at the end of the day, you can look back and take some satisfaction in what you have accomplished.


Now that isn’t that I don’t feel good about my caregiving.  If I consider the last 18+ years of Matthew’s life I take satisfaction in the knowledge that my caregiving has largely kept Matthew healthy, and ensured he continues to enjoy excellent quality of life. Some days I can reflect back on the day and glow in  the happiness of a good day spent with Matthew.  There is no doubt that my caregiving has had a positive effect on his life.


But as most caregivers know, many days conclude with a sense of emptiness, exhaustion, isolation, and the knowledge that in a few hours you are going to get up (likely still tired) and do it all over again.  No one will say thank-you.  No one in the community will tell you that you are doing a good job.  Your caregiving will remain largely hidden and unappreciated.  You often don’t SEE the results of your work – beyond a great big pile of laundry.  Really, as a caregiver, you just survived another day.



Which is why my most recent monday was a gift. I got to see a task to completion!  I spent the day finishing up the staining of our cedar cottage exterior.  To keep the cedar planks of our cottage looking decent means that they need to be re-stained every five years or so.  This past summer, as the staining chore dragged on,  I threatened to slap aluminum siding on the cottage so we could forego this ritual.  My husband told me I could do that over his dead body.


In order to get the staining done my husband and I took turns heading up to the cottage separately.  Matthew’s weekend nursing schedule these days was such that finding a weekend we both could be up was impossible.  We did find one monday to be there together to tackle the two-person jobs.  But for the most part one of us would head to the cottage for a day or two and spend a decent chunk of the day with a paintbrush in their hand.


This past monday I went up to tackle the “ends” of the cottage since they were a job my shorter stature could handle without climbing tall ladders – something my husband and I prefer to avoid when solo.  At about 2:30pm I put the last few splashes of stain on the side of the cottage and I realized I had reached the end of the cottage.  And it felt GLORIOUS.  LIKE AMAZING!!  I cannot tell you how excited I was to be able to stand back and see the results of my work.  I know.  WEIRD.  But there you have it!!!!  I was positively giddy.


And it occurred to me that that my elation was likely in part due the fact that the last almost 20 years of caregiving has offered little opportunity to see a task done to completion, and to get to celebrate that conclusion. Years of demanding, never-ending caregiving meant that I had rarely reached the end of a task.  There was/is always more of the same waiting for me tomorrow.  Similarly, as a PhD student, I spend a lot of time reading and writing and only produce a finished project once, or twice, a year.  Some days I measure progress in sentences written and little more.   And I am aware that as I move to the research and dissertation stage of my degree the length of time to produce something that is “DONE” will only lengthen.


Which is why it was fantastic to tackle a chore where I could see, and celebrate, a finished product at the end!  And also lament my terrible selfie taking skills!!!



This past weekend I celebrated my 50th birthday.  As birthdays go, it was a pretty spectacular one.  I started and concluded the weekend at my cottage – one of my favourite places on this earth!  As luck would have it I had to run up to the cottage friday to have my youngest ready to report to a local film site on saturday morning where he was cast as the aide to Sir Bond Head in a historical film project.  Doesn’t he look impressive!


After filming we sprinted back to Waterloo to celebrate my birthday with family and friends.  On Sunday I played in a mini-soccer tournament with some pretty fantastic women.   Following three hours of continuous soccer in staggering heat I jumped back into my car and ran back up to my cottage to join my husband for a hot date (literally!) re-staining the exterior of our cottage.


Truth be told, though, that hot date re-staining our cottage was awesome.  One of the things that we don’t talk a lot about when it comes to caregiving is how it can fracture a family.  By fracture I don’t mean divorce, or something drastic like that, though we know that happens.  What I mean by fracture is that caregiving often causes a growing family to “divide and conquer”.  At least it did ours.


What I mean by “divide-and-conquer” is the fact that one parent had to almost always remain with Matthew to provide care while the other parent engaged in family life.  Since the world is a fairly inaccessible place, and Matthew was very medically fragile during our younger family years, this often meant that I remained at home to provide care while my husband took our two able-bodied children to music lessons, Little League games, hockey practices, and so on.  I would often organize nursing care so that I could make important games and performances, but I missed more family activities than I would have liked.


What this also meant was that couple time was exceedingly scarce since we often ran off in different directions facilitating family life.  Throw in the fact that my husband has an inordinately  busy job and my husband and I have often gone days passing like ships in the night communicating with yellow sticky notes and brief emails.  Time together has always been a rare commodity in our divide and conquer family life.


Which is why I love our cottage, particularly now that our children are more independent and we have stable nursing care for Matthew.  Owning a cottage means work.  At times it means work that demands two bodies to accomplish the task.  This means that my husband and I now find ourselves tackling chores together out of necessity.   You might laugh, but this is actually a pretty novel thing in our marriage, and one we are both enjoying.


Last summer after extensive accessibility renovations to our cottage my husband and I arrived early in the spring to find the all the furniture stacked in the living room covered in sheets.  Most of the contents of the cottage was packed in boxes.  In order to sleep that night we were going to have move furniture back to its original location and unpack important things like blankets and sheets.  We cranked the tunes, cracked some cold beer, and got to work –  working well past midnight organizing the cottage.  We talked and laughed and had a really fantastic time.  That memory of unpacking the cottage remains one of the my favourite of last season.


Over the last few weeks my husband had been heading up to the cottage to re-stain the exterior of our vintage cedar clad cottage. I have remained at home because we didn’t have full weekend nursing coverage for Matthew.   But I put my foot down when it came to climbing tall ladders.  I told him that he couldn’t do such a thing unless someone was there to make sure he didn’t fall and injure himself.  Or at least was there to call 911 when he did.  So on sunday, after three hours of soccer, I ran up to the cottage to help with the two-person parts of staining our cottage.  We spent monday staining in the crazy heat that surprised much of Ontario late in the September.  We concluded the day with a barbecue and a game of Scrabble.  It was a rare moment of togetherness in our busy lives, and it was lovely.


Couple-time is often a casualty of extreme caregiving.  We talk about the fact that couples rarely have time for fun things like dates, outings, or shared vacations.  But what we often don’t talk about as much is the fact that the shared mundane stuff of life can also vanish.  Things like washing the dishes together, cooking together, attending worship together, walking the dog – those brief snippets of daily togetherness just don’t happen, at least not together, because someone has to be doing the work of caring.  And it is these little everyday moments of life that are an important glue that cement a marriage.


I am glad that my husband and I are reaching a stage in this caregiving journey where we seem to be getting some of those moments back.

Accommodation is not coddling.

Most mornings I enjoy a cup of coffee while I peruse the headlines of two newspapers before tackling whatever work the day requires.  Today, as we were passing the various newspaper sections between us, my husband pointed out Margaret Wente’s opinion piece in the Globe and Mail as something that might pique my interest.  He was right.


Wente argues that we are coddling our university students.  She argues that mental health initiatives, and many accommodations for people with identified disabilities are simply slanting the odds in favour of the less resilient, and less able.  She seems fine with the idea of physical accommodations for physical disabilities, to a point, but accommodating intellectual disabilities simply means, as she sees it, students unfit for university are allowed to earn degrees they don’t actually deserve.


What Wente seems to completely lose sight of that those accommodations don’t water down the requirements of university work, they simply shift the work so that students can learn by employing their strengths.  University learning, as a general rule, is highly structured and taught in a fairly linear, universal manner.  Students who  process written information rapidly, and who write fluently, do well.  Students who process language and information at different speeds, or by using different avenues, often require accommodations.  This doesn’t mean the students don’t do the work, they just might do the work differently.  For example a student who struggles with reading might listen to a book.  A student who has difficultly organizing information might employ a range of assistive strategies.  Students who process information more slowly are allowed extensions for papers and exams.


Sadly, Wente seems very comfortable with the idea of a universal society where people fit into specific boxes and slots and go on to engage society accordingly.  Those who can perform in a very specific, and very narrow,  intellectual box get to attend post-secondary schooling and proceed to work in coveted jobs.  Those who learn and process information differently should be excluded – their potential and contribution lost to society.  Wente seems to lose sight of the fact that when society becomes more fluid in its understanding of contribution, talent, ability, and work, we are far more able to access the wisdom of our collective community.  Just look at the level of innovation emerging from tech sector with its norm-busting, jeans wearing, rock-climbing, skateboard riding, all-hours keeping, work environments.  The tech sector doesn’t encourage people to think outside the box.  It threw the box out years ago having found it needlessly constraining.  The idea that a work environment like the tech sector could look like a teen playground was anathema until recently.  Surely such slack work expectations would yield poor results.   Nope.


Wente also seems to lose sight of the fact that historically we have found all sorts of reasons to limit  both access to opportunities and the potential of our fellow community members.  She seems unaware of the idea that “normal” is a social construct that shifts as the years go by.  We have found all sorts of valid, in our view, reasons to exclude people that seem different from the cultural majority – those we think of as normal.   What accommodations teach us is that if we drop those arbitrary, and yes they are arbitrary, expectations  of students to fit into some narrow definition of “normal” then a whole lot of students can do a whole lot of stuff we didn’t think they could do.  And by extension these students go out in the world and do even more amazing stuff, not in spite of engaging the world differently but because they engage the world differently.

Most people know that I am a doctoral student who hopes to actually complete a PhD before I die.  Some days I have sincere doubts that this a realistic goal.  This PhD journey has been long and tortuous and has been assisted by many accommodations, and a whole lot of compassionate flexibility, over the years.   Most notably, I have had professors willingly offer paper extensions.  But recently I had a professor engage in some pretty creative accommodating to ensure I could complete my studies locally.  All this support has meant that I can continue to study while managing the complex demands of my son’s care.  It isn’t that I have fewer expectations, or that my work is lacking, it is simply that I am engaging the doctoral program at a different pace than other students.  Without this flexibility, and that is what it is, flexibility not coddling, I am able to pursue my dream of engaging in caregiving research.  But by Wente’s thinking I am simply a fragile student who is being coddled.  That fact that my unique life experiences mean that I have something to say, and perhaps even something meaningful to offer to the conversation about disability and caregiving, is lost to her.  By her thinking, the very idea that I cannot keep pace with students who do not care for a complex child ought to exclude me from the journey.  But by excluding real-life caregivers in ongoing research about caregiving means that our conversations and study of the subject would never be ground in real-life.  Something huge would be lost in the conversation and our best research would have gaps in knowledge.  Accommodations mean that I get to be part of a conversation that would have been unavailable to me without that flexibility.  And in return, perhaps I can add something meaningful to the dialogue.


It’s the same when we exclude students with disabilities.   Sorry Ms. Wente.  Despite what you suggest, giving a student with a limp a 20-yard  head-start does not offer meaningless results at the end of 100-yards.  What the race teaches all of us is that there are many ways to creatively get places, and that being the first to cross the finish line isn’t the only way to measure success.  Accommodations allow people who engage the world differently than the majority to teach us that thinking and moving and learning outside the box can offer amazing insight and incredible results.


Similarly,  Wente argues that things like dog therapy during exams is coddling students who should just suck it up and get through the tough days.  As she points out, in her day they used much better coping strategies, you know, like pot and alcohol and jelly doughnuts.  Yup.  That’s right Wente.  Drug use, or binge drinking, makes so much more sense than a healthy coping strategy like having stressed out students play with dogs for an hour during a lunch  break.



Wine drinking mommies.

Alas, summer has passed and I once again find myself sitting daily at my desk thinking about university courses, philosophy, and the occasional blog post.  It is good to be back and the return to routine is soothing.


The theme of this post has been swirling in the back of my head for a while.  A few weeks ago during my nightly knitting fix I watched a documentary about problem drinking.  Featured prominently was a mother’s group who gathered weekly for wine and conversation.  Most women at the gathering drank a little “too much” and one woman in particular was approaching problem drinking.  The women in the group talked openly about the need to cope with their mommy moments with this weekly opportunity to gather and cut loose.  Alcohol, they admitted, deadened the sting of divorce, betrayal, disappointment, loss, and daily drudgery.  The fact that the their wine habit was becoming a very real problem for a dear friend seemed to be missed by the group.  If anything there was judgement being directed at her inability to keep control.  Seemingly lost on the friends was the idea that they, too, were only a few drinks, a divorce, or a tragedy, from losing control; that control was indeed fragile in this culture that increasingly celebrated wine as mommy’s new best friend.  I remember commenting to my husband that I could see how easily the slide could happen.   And that there was a time I think it could have happened to me.


Today there was an article in the paper that reminded me of that recently watched documentary.  For those who don’t know there is a colossal uproar about a Toronto wine festival for new mothers.   The tagline is “babes on hips, wine on lips”.    The organizers of the festival argue that the vitriol directed at the mothers and the festival is unfair and is just another form of backlash and judgement heaped upon moms.  They argue that a beer festival for dads would be fine, but wine and women is seen as problematic.  Conversely, others worry that in an era of increased problem drinking among women public mommy-wine festivals are another brick in the wall of normalizing alcohol consumption and inappropriate drinking as stress management.


I think there was a time when I would have agreed with the first sentiment.  Now I am not so sure.  And in the interest of full disclosure this will be an uneasy post to write.  This is not the sort of stuff a have-it-all-together woman talks about.


During the years when Matthew was at his most medically unstable I celebrated the survival of yet another day of unsustainable stress and anxiety with an evening glass of wine.  My days were a blur of isolation, teeth gnashing worry, and constant thankless demands.  I was knee deep in extreme care.  The days were alternated with nights where I slept little.  While I loved my family and was devoted to my kids, many days were filled with mind-numbing drudgery done in total isolation.  Adult company of any kind was rare.  And as is the case for many young moms, leaving the house to go to the gym, or go for a jog, or engage in a range of healthy coping strategies, wasn’t realistic. I couldn’t leave the kids unsupervised, and in particular Matthew with his reflux and breathing issues and seizures, required extraordinary vigilance.

Facebook told me this evening glass of wine was an acceptable and normal coping strategy.  There were daily memes on Facebook celebrating the “mommy needs a cocktail” message. There were funny videos of yummy mummies sipping wine between bicep curls, or sit-ups.  There was yoga and wine.  Wine was cool, and funny, and mommy’s new friend.  The mommy wine culture seemed pervasive.  And so every evening I collapsed on the couch, often alone, with a glass of wine.  During the worst years of caregiving my evening glass of wine was a ritual that I would look forward to. Some days I outright craved it.  It offered a few minutes of “me” time.  It took the edge off of my chronic anxiety.  The nightly ritual helped shut me down.   On really brutal days I might have a second glass of wine.  It was normal.  Many of my friends admitted to a daily glass of wine, so it must be okay.  Social media confirmed this.  My family doctor, when asked, noted that the number of drinks I had per week was below the accepted norm for women.  So clearly I was fine.


But you know what.  I wasn’t fine. My alcohol consumption might have been considered “safe”, but I knew that my nightly ritual was crossing into a form of self-medication.  I knew that I was beginning to dance on the top of a slippery slope and it was starting to scare me.  I could see how the fall down that hill happened to women – even women who seemed to have it all together.  Wine was becoming a friend I spent my evenings with and I knew that was NOT okay.


I am not the least surprised that problem drinking is on the rise in women.  Despite the fact that most women work outside the home while juggling parenting and homemaking tasks, statistics tell us that their male partners haven’t stepped in to share the load.  Caregiving and household tasks inordinately fall on women.  Extreme caregiving almost always falls upon women.  Practicing self-care can be downright impossible and that nightly glass of wine becomes a very easy, and very convenient substitute. And there are messages every where explicitly telling us that wine is how mommies cope with an out of control day.  Or life.  And when life throws you a curveball, say a medically fragile child,  that glass of wine could become two glasses of wine.  Or more.


A few years ago I remember sitting on the couch having finished my nightly glass of wine.  And I wanted another.  Hell, I craved another.  It had been a crappy day.  Matthew had screamed for the whole freaking day.  The doctors were ignoring our plea for pain control.  Matthew was miserable.  The house was a mess.  I was alone.  Again.  My husband, with his inordinately demanding job, was working late.  I couldn’t remember the last time I had done something fun, or had talked to an adult that wasn’t a nurse.  Damn, didn’t I deserve anther glass of wine?!


And that was when I knew this evening glass of wine was not a good thing.  In fact, it was probably a bad thing.  I didn’t deserve a glass of wine.  You don’t earn glasses of wine by surviving bad mommy-days. Wine was not my friend, nor it was my reward.  Wine wasn’t a healthy way to cope with mommy stress, or any stress.


It is that message, that wine is a salve or reward, that worries me about the mommy wine culture that is emerging.  The message is that moms have earned that glass of wine, or worse need it, to survive the days.  Wine consumption, it seems, is something the new, hip mom does.  And with that thinking it can become really easy to justify a second glass of wine.  And when you’re alone, no one knows about glass number two.  Or three.  And there it is. The slippery slope.


Several years ago my nightly glass of wine ritual stopped.  Cold turkey.  I switched to herbal tea.  Don’t get me wrong.  I am no tea-totaler and likely never will be.  I still enjoy wine socially.  A glass of wine with friends, or while sitting on the dock at my cottage, is one of life’s genuine pleasures.  I am turning 50 this month and I am sure I will celebrate by raising a glass.  But these days I am very clear that wine is a treat.  And more so, I am clear about the idea that wine is never something to ease the burden of a bad day, or stressful life. There is soccer, or jogging, or knitting, or friends, for those days and I reach out for those supports.


These days I am very intentional about when I choose to drink wine, and how much I drink.  Because a few years ago I was beginning to stand at the top of a slippery slope and I could see over the edge.  And I knew I didn’t want to go down that path.  Ever.








Hire a maid. Miss the point.

This evening I was cruising Facebook, as I often do, and a post popped onto my timeline suggesting that I would be a whole lot happier if I hired a maid.  And I am sure that is true.  Actually, I know that is true.  I just walked by my powder room and noted that it really needed a cleaning.   And so I write a blog post about cleaning rather than actually cleaning the bathroom.  Can you tell I hate housework and only do it when absolutely necessary?


Most caregivers are overextended – the result of a deluge of daily activities that monopolize every waking hour, and often the sleeping ones as well.  Days are an out-of-control hamster wheel of changing diapers, managing g-tube feeds, organizing appointments, giving medications, stretching tight muscles, advocating for services and funding, and so on.  Throw in the stuff you cannot avoid like grocery shopping, meal preparation, laundry, paying bills, and earning money to pay those bills, and most caregivers are walking around in a permanently frazzled state.  A maid is a pretty darn good idea. Right?


Statistically speaking we know women are almost always caregivers.  Those same statistics tell us that women usually do the heavy lifting when it comes to housework and child care.  These days there is also talk of the mental load carried by women – the fact that they, alone, are responsible for getting things done even if they can delegate work.  The idea being that the emotional toll of being responsible for everything is daunting.


But here’s where the social justice part of me gets concerned.  When we women hire others to help us we risk passing the workload off onto more vulnerable women.  While not universally true, women who clean houses and do similar service work, tend to work long hours for lower wages with limited benefits, primarily to ease the burden of more affluent, well-educated women.  In other words the housework problem remains a woman’s problem.  It is simply that we “more privileged” women have passed along our long list of chores to another “less privileged” woman.  Author Mona Harrington in Care and Equality unpacks this complex issue well.  As she bluntly puts it, one of the important tasks facing our society today is how we address this caregiving challenge.  Harrington reminds us that simply  creating a new class of caregivers and service workers who risk living vulnerable and exploited lives is not a satisfactory or sustainable answer.  And in the end, I like to think that both our children and the people who love and care for them (who are usually women) deserve more.


On a personal note I have had to think about this particular issue a fair bit.  Almost ten years ago we hired a full-time, live-in caregiver to assist with Matthew’s care.  Carol came to Canada via the live-in caregivers program from the Philippines – a program that has a history of placing women in situations where they risk being exploited.  And it would be no understatement to say that Carol saved my life and my sanity.  I cannot express my gratitude for her excellent and loving care of my son.  But I am also aware that it is not okay if my life and sanity happen at the expense of hers.  As a result my husband and I have worked very hard to make sure she is well-paid, has benefits such as dental, prescriptions, and eye-care, and that she has liberal access to holiday time, return trips home, self-care opportunities, and continuing education if she chooses.  But still I worry.  I have tried hard to create an egalitarian relationship comprised of two women working together for a common goal – the care of my son – but at times that is easier said than done.  In the end I cannot change the fact that I am her employer.


So returning to the matter of the maid.  There is no doubt that exhausted caregivers would benefit from someone who will clean their homes weekly among other supports.  But I think the better response to the reality of exhausted caregivers is not maids, but a more comprehensive approach to caregiving that ensures that caregivers receive adequate supports and sufficient respite.  The challenge, of course, is that a maid is a whole lot cheaper than a nurse.


I have no ready answers.  I only know we have a lot of work ahead of us.  And I worry that while a maid is the easy answer and the one that provides a nice Facebook soundbite, it isn’t the right one when it comes to the addressing the inordinate burden of caregiving.

Today I wore a white shirt!

I am emerging from my summer writing hiatus to share that today I wore a white shirt.  This clearly indicates that my life as an extreme caregiver is in transition.


About 20 years ago I stopped wearing white.  At first, similar to most parents with young kids, it was because I had young babies and toddlers who were likely to wipe snot and sticky fingers on my clothing.  But by the school-aged years, the time when most parents are breaking their white clothes out of their closets again, mine were being relegated to the thrift store donation box.  I figured I would never wear white, or any light colour for that matter, again.


Matthew has off-the-scale reflux.  This means that his compromised muscle tone involves his GI tract.  Food hits his stomach and is often regurgitated.  In the early days it meant we struggled to not only get him to gain weight, but even to keep him hydrated and to keep important drugs like anti-seizure meds in his system.  These days his reflux is well controlled with medication, a feeding tube, and some pretty invasive surgery, but I spent the better part of about 14 years being barfed on multiple times a day.  At its worst, Matthew’s reflux meant that anything pumped into his stomach (remember, feeding tube) came flying back at me (literally, we’re talking some seriously  projectile stuff) about an hour later.  For medical reasons we documented and tracked his reflux patterns and noted that about 10-15 episodes of barfing a day was pretty standard.  I have no doubt it was awful for Matthew, and for me it meant no light colours and frequent clothing changes.  Drugs and feeding tube formula stains. White was reserved for rare occasions I would be, a) out of the house, and b) not providing any sort of care for Matthew.  I own very few white or light coloured shirts.


Yesterday, Matthew moved to his future group home for a three week respite admission.  Right now the plan is that he will move there full-time in early fall.  Over the last few months my caregiving responsibilities have waned significantly as we begin to work through the logistically and emotionally complicated journey of transferring Matthew’s care to others.


So today I got out of bed, and knowing Matthew was elsewhere, I dressed in a white blouse.  Something I almost never do.  As I was pulling the blouse on it dawned on me that this white blouse was, in many ways, symbolic of the caregiving transition that is well underway in my life.  As Matthew moves into his new life I will be doing the same.  I will be pulling things from my pre-caregiving days out of my closet and hoping they still fit.  These things might include blouses, but could also include exciting things like hobbies, friendships, careers, and me-time!  Lately I have become increasingly aware of my re-opening of this old cupboard and trying things on for size.  It is simultaneously exciting and terrifying.  At times I feel almost paralyzed as I stand there, uncertain, about what my next steps might, or ought to, be.  What should I take out of the closet and dust off, and what should simply remain where it has been for 20 years.


And then real life kicks in!  Today, sporting my pretty white blouse, I do what I normally do when in town Saturday mornings.  I head off to City Cafe for my weekly indulgence of hot coffee and a fresh-from-the oven, Montreal-style bagel. For our family Saturday bagels are a deeply  held tradition.  And while at the coffee station (at City one prepares their own coffee) I bumped into the coffee stand and hot coffee splotched onto my white blouse.  Sure enough once home that blouse was in the laundry pile and was replaced by a more practical navy shirt.


Transitions, like life, are messy and there will likely be a lot of trying on and tossing away until I sort things out.

Reflections on empty bedrooms.

On Friday evening I dropped my eldest off at the summer camp where he works. He will spend the next two months working with schools in the camp’s outdoor education program. For July and August he will be head counsellor at the camp.   This is the fourth year he has worked at camp and I know he loves his time there. Like any parent I am thrilled he is finding his way in the world and seems happy on the journey.

In late August he will dash home and pack up his things to head off to his fourth year at university. He attends university locally, so despite the fact the that he lives with friends we still see him regularly. I expect he will likely live at home again at some point in the future since he is making noises about grad school.  So to date the early stages of our transition to “empty nest” hasn’t been particularly traumatic.  But I know it is only a matter of time.

As I drove home from camp Friday it struck me that by the time my eldest returns home to live Matthew could  be living in a group home. We don’t know when that transition will happen, only that it is likely looming in our not too distant future.  As I drove it slowly dawned on me that this past school year was possibly the last time I will have all three of my children living under the same roof.  And for a few moments during the drive home I descended into a bit of a funk.  There was a sense of sadness that a really important chapter of my life was reaching its conclusion.  The steady four days of rain we had endured probably didn’t help.

Like many parents I am simultaneously excited and devastated about this gradual transition to an empty nest.  These two emotions, in particular, live in paradoxical tension with regard to Matthew.  On one hand the relief I know I will feel about NOT having to manage his care, coordinate his nurses, change his diapers, and so on, is pretty significant. I will able to plan and live my life without the ubiquitous demands of Matthew’s care, and I won’t live with this crushing sense of responsibility.

With  Matthew in care, I will be able to be selfish and place my needs closer to the top of my to-do list.  That is pretty seductive after 18+ years of placing Matthew’s 24-hour care ahead of almost everything in my life – including key things like sleep, showers, eating, family-time, and so on.  I am human after all. I am ready for a break.  However, existing in the same breath, is the simultaneous heartbreak of knowing that I will need to relinquish Matthew’s care to someone else – that the well-being of my vulnerable beloved son will be in someone else’s hands.   What if that someone else isn’t as attentive to detail as I am.  What if that someone else only sees Matthew as a job, rather than a human being. What if Matthew suffers because of my apparent selfishness. The anxiety and guilt is pretty crushing despite the hard fact that, even if I wanted to, I cannot manage Matthew’s care indefinitely.

And then there is the awareness that the rest of the world might be judging me as well, and that includes other parents like me.   I have heard fellow parents of complex children talk about their belief that placing any child in a group home is an act of pure selfishness on the part of the parent.  That parents who do so want “forget about their child and get on with their lives”.  As if we could.  Forget about our child, that is.  I know I won’t be able to.  It is unfortunate that even in our community, among parents who are equally burdened, we are quick to heap judgement on one another.

Life in transition.

This morning at 5:45am I jolted awake.  I had been dreaming.  It was the same dream that seems to be on a loop in my brain these days.  In this dream we have moved back to our first home we purchased.  It is a small four level back split that is not, and could never be, wheelchair accessible.  Everyone but Matthew can live comfortably in this home, and in the dream our other boys, indeed everyone but me, seems to be settling in reasonably well.  In fact everyone else carries on with life except me.  I spend the dream running around in a frantic display of rage.   I am The Hulk on steroids.  Everyone else in the dream sees my anger, but cannot understand it.  And so they walk on by. Or tell me to calm down.

The home of my dream is different than the one we purchased 20 years ago, but somehow I know it is a home we once owned.  What always stands out about the dream is not the house itself, but my anger.  In this recurring dream I am always seething with an anger that I never express in my real life.  I am mad at everyone and everything and the anger boils out of my mouth and body in such a way that I don’t recognize myself.  But yet I know this raving frantic woman is me.

I am no Freudian dream analyst (if there are any out there please feel free to chime in!), but the dream itself doesn’t seem all that surprising.  We are beginning to assertively work through Matthew’s transition to adulthood, which will likely include an eventual move to a group home.  Yesterday I consulted with Matthew’s lawyer about a funding question related to Matthew living elsewhere.  Today we will head to London to attend Matthew’s first medical appointment as an “adult”.  Late last week we chatted with the home where Matthew will eventually move.  Matthew is presently in respite which is also probably stirring my emotional pot.  There are all sorts of signals in my daily life that we are knee-deep in a huge life transition that will fundamentally change my role as Matthew’s mother.  And while in real life I appear composed and logical about this transition apparently my deep-seated emotional self really isn’t crazy about all this change.  I have always thought Matthew’s move was sometime in the future, so it is clearly jarring me that we seem to have caught up with this hypothetical future.

The dream seems to be telling me things.  The fact that I return to a home I have previously known seems important.  The place is familiar, but not.  I know my way around, but yet still feel lost.  Other people in the dream seem to settle in quickly, but not only can I not settle, but I carry a rage that cannot be contained by my body.  In this dream-house I want to break things.  I want to kick things.  I want to throw a Herculean sized temper tantrum that would put all three-year olds on the face of this earth to shame.  In the dream the home is lovely but the only thing I can see is that Matthew is not there and cannot visit because of the damn stairs that are everywhere.  But for some reason, a reason that is not evident in the dream, we need to live in this house.   The others in my dream know this too, but seem less bothered.  They tell me to calm down.  They tell me that Matthew is nearby and I can visit.   They tell me that we can deal with the fact that he cannot enter this house.  But this only fuels my angered frenzy.  For me, the rage only settles when I wake up, and even then there is a bit of a dream hangover.

I have always known that there is a good chance Matthew might move away from home.  Sure we spent years thinking we could keep him at home forever, but in recent years as he has become larger and more difficult to care for, I have known a move was probably in Matthew’s future.  In the last year in particular it has become clear that even with the extraordinary support Matthew receives his care is reaching the point where we need a team of caregivers to ensure his safety.  Matthew is too big, his care too heavy and complex, to be managed by single caregivers these days.  At least not without risking the caregiver’s safety and well-being.  Keeping him at home would meet my need to have him close by, but in the end would be in no one’s best interest.   My head knows this.  My heart still seems to be working through the issue.

So these days we are working hard with a group home to develop a slightly less traditional way of living in a group home – one where Matthew will continue to be deeply involved in his community and with his family.  The group home leadership has impressed me with its commitment to working with us toward achieving this goal.  I am moving forward with great hope, though it is clear that my unconscious is still grappling with some issues.

Deep down I know that once Matthew is settled and I know he is happy I will likely calm down.  The dreams will end and we will learn to live our new normal – a life that might be healthier for all of us.  I will develop a new way of being Matthew’s mother, caregiver, and main advocate.  But right now we are in a protracted period of transition, part of which involves learning to share Matthew with others, which I clearly find very unsettling.