We’re back!

 

img_20160915_0905053

Summer is over and we’re back to normal life, some of us as you can see, kicking and screaming!

There are many ways I can tell that summer is over and fall is nigh.  The students return to our university town.  We begin to see the early stages of construction of the Oktoberfest tent.  The kids go back to school and the snowbirds we know begin packing for their exodus south.  And we begin to worry about Matthew’s health again.

Summer is often a pleasant hiatus from any serious health concerns for Matthew.  Communicable viruses seem to wane and he generally enjoys a stretch of good health and medical stability.  For medically fragile children the fall return to school, day programs, and activities, while fun, also signals a return to larger crowds of people sharing germs in confined spaces.  And for our kids minor bugs that other kids weather with little difficulty can wreak havoc.

Like clockwork yesterday we got the call.  Summer is over, after all.  I had just finished a karate lesson, one of the few “me” moments in my busy week, and the nurse called from Matthew’s day program.  He had been irritable all day.  He was running a low grade fever.  His oxygen SATs have been on the low end of normal all day and not rebounding.  It’s likely nothing acute but the day program was worried something was brewing. Please come and get him.  So Matthew is home today, and as you can tell by the above picture, not particularly happy with life.

Awesome!  (said with serious sarcasm).

Tomorrow I am off to London for the day and Saturday is my husband’s 50th birthday celebration.  Matthew’s timing, as always, is impeccable.

I normally love fall.  I love pumpkins, and crisp fall days, and sweaters, and tea, and hikes through orange and red forests. And of course a return to blogging after my summer hiatus. But I hate the return of fall viruses.

 

 

Talking about death: Fully living life.

IMG_2083

 

Canada is knee deep in the discussion about how to implement medically assisted death for terminally ill, competent adults who choose to end their life because of self-defined, intractable suffering.  The ensuing debate is complex and heavily nuanced.  One significant concern voiced by people with disabilities is that many in our society conflate disability with suffering, and as a result, people with disabilities have deep concerns that disability will become an appropriate criteria for requesting medically assisted death.  This is a legitimate concern and one I may take up at another time – but not today.

 

I will admit that I see the ensuing conversation a bit differently. As a rule I think open conversations about life and death can have unexpected positive results and I am hoping that the ongoing debate about death and suffering might actually encourage people to think more intentionally about life and living.

 

Living with a medically fragile child means that I have witnessed intractable, poorly managed suffering much more than I would have liked. I have first-hand experience with how ill-equipped at times our medical community  can be with handling such suffering. There was about a year of Matthew’s life where I genuinely questioned whether we were doing the right thing by intervening to the extent we did. During some of my darkest moments I wondered if his death would be a blessing. It is brutally difficult to watch someone you love suffer, particularly when that person cannot articulate or influence their suffering in any way. As a cognitively impaired, non-verbal child Matthew simply had to endure his suffering. It was awful.

 

I have often stated that while I worry about Matthew’s death, bearing witness to his ongoing suffering terrifies me a whole lot more. One result of my journey with Matthew is that I find I am sympathetic to the assisted death conversation and a person’s right to choose. I can understand how someone might wish to place limits on their suffering, however personally defined, and I can appreciate that by establishing such boundaries the individual might feel more able to live fully amid life limiting situations.  Because as far as I see it, living fully and how that is personally defined is an important part of conversations about death.

 

As the parent of a medically fragile child I have spent much of the last 17 years knowing the shadow of death lurks in the immediate vicinity. It is a pretty scary feeling. But living with full awareness of Matthew’s medically fragile status means that I am much more intentional about the life I create for Matthew, and by extension, I am also much more intentional about decisions regarding my own life. As people receiving palliative care will remind us, when you live in the presence of death the sometimes-surprising result is that you may live life with much greater abandon. Being aware of the finitude of our lives can actually be a great gift because it means we are less likely to take that life for granted.

 

In my opinion, this whole assisted death conversation provides an excellent opportunity for all of us to spend time clarifying what “quality of life” looks like for each of us. The current conversation about death and suffering, while frightening, can demand that we fully consider what living life to the fullest looks like. As Matthew’s mother I have learned that honest conversations about death, illness, and suffering (the kind I have with some regularity) have the unexpected result of encouraging me to live more fully and in the moment. I  am blessed because I live with the constant awareness of the profound gift of life.

 

The medical community predicts that Matthew will die before me. I say this knowing full well that people outlive their life expectancies all the time, and for my son’s sake I hope with every fibre of my being that he does. However living in the shadow of death means that while I will still no doubt grieve my son with abandon if he predeceases me, I will also be able to say good-bye to him knowing that I did everything within my power to ensure that his time here on this earth was lived to the fullest.

 

So perhaps as we approach this all-too-uncomfortable conversation about suffering and death we might wish to remind ourselves that such chats, while difficult, can have unanticipated benefits in terms of living.

After…

IMG_0697

There are moments in life that change us.  Marriage, parenting, graduation, retirement – many of life’s major transitions divide a life into a before and an after.  In many situations who we are, how we live, and how we see the world radically shifts after these moments.

However for some of us there is an After.  There is a singular moment in our life that is so earth shattering that  it radically changes everything about our life and who we are in such a profound way that is impossible for us to avoid being fundamentally changed.  These moments can be deeply traumatic.  It is as if the fabric of our world, indeed ourselves, has been rent in two and the pieces imperfectly joined.  We are still whole, but the division is noticeable – at least to us – and is permanent.

My After was the birth of my second child – the son who has inspired this blog.  Matthew suffered what has been described “catastrophic brain damage” during his delivery.  This brain damage was caused by a physician.  That fact has been affirmed by two separate courts that decided that Matthew’s birth involved medical negligence that caused the significant disabilities with which he lives.  A doctor’s decision irretrievably changed my son’s life, and by extension, mine.  The moment this man picked up a pair of forceps I became an extreme caregiver.

For a long time this angered me. Really, really angered me.  It took me years to begin process the rage that I directed towards this particular individual.  I pinned the losses and suffering of my son, my family, and myself, on this individual.  Peace was elusive, and while I hid the worst of it, my anger was destructive – at least to me.

Because I am a little weird I worked through most of my anger by studying theology.  I often joke that my graduate work in theology was an expensive and labour intensive form therapy.  But these studies reminded me that life is random and unfair and only God is perfect.  To be human means that we make mistakes and it is unfair to hold a physician to expectations only appropriate for the Divine.

Last week I attended my youngest son’s music concert.  My son attends a very small private school and my family has been members of this school community for many years. As I milled around the foyer after the concert I noticed this particular physician standing off in the distance.  It seems, at least for a while, we will be members of the same community.

For a moment I was rattled.  I wasn’t sure I wanted to share My community with Him. 

And then it occurred to me that  we were okay.  My son was okay.  I was okay.  My family was okay.  My marriage was okay.  Heck, we’re pretty happy most days.  It took me 17 years, but I am hoping I have found a new After.  The moment I was irretrievably changed because I could finally replace a bottomless soul destroying rage with a sense of peace.

 

 

Leaning In. Walking Away.

Sheryl Sandberg, CEO of Facebook and author of Lean In: Woman, Work, and the Will to Lead is in the news these days after she posted a lengthy Mother’s Day article on Facebook.  In her post she shared that in Lean In she might have missed a few key points. Specifically, on the one year anniversary of her husband’s death, she wrote “I did not quite get it.  I did not really get how hard it is to succeed at work when you are overwhelmed at home”.

I need to start this blog post by confessing that I didn’t read Sheryl Sandberg’s book which is unusual.  I read a lot. And hers is the sort of book I often make the effort to read.  But Sandberg’s book promised to annoy me so I avoided it.  Reviews suggested it was a book about how successful women could become more successful by maximizing the advantages they already had. I also got the sense that the less than subtle message the book might offer was that if you weren’t as successful as you had hoped then you probably only had yourself to blame.  Because, you know, life is fair and we all have the same opportunities and advantages.  Whatever.  As an extreme caregiver who has spent years grieving the loss of my career and professional identity I figured her book would either reduce me to tears, or piss me off sufficiently that I would want to set it on fire.  My husband gets antsy about lit candles, I hate to think of how he’d respond to a book burning.

I avoided Sandberg’s book because it appeared to be about the succesful life that I had wanted.  I had spent my early adult years doing everything I was supposed to do to be successful.  And while I never aspired to be the CEO of Facebook or anything like that, I did have some lofty goals and dreams. Until the proverbial crap hit the fan things seemed to be going tickety-boo.  I was doing all the right things.  I had pursued advanced education.  I had accepted rewarding job opportunities.  I married a great guy who would support all my dreams.  I had fantastic child care following the birth of my first child.  But then a doctor made a mistake during my son’s delivery and the life I had thought I would have – that I had planned to have – came to a screeching halt. And unlike what Sandberg’s book might suggest, that derailment was completely out of my control.

Sadly, I didn’t get it right away.   I spent several years trying to continue on the path that I had chosen.  I enrolled in a doctoral program in the health sciences.  I spoke at conferences and taught university and college lectures.  I worked part time.  And it was all too overwhelming. I felt I did nothing well because I was far too overextended. I was juggling a million balls and it was  just a matter of time until everything came crashing on my head.

Something had to give.  I walked away from doctoral work.  I quit my job. I resigned from my regulatory college.  I spent years where my only identity was that of an extreme caregiver.  It was the best I could do.  It was the only thing I could do.  During those years I loved my family, but often hated my life.  I was simultaneously grateful that we could afford to have me walk away from everything and deal with the crap (literally at times), while being resentful that life had forced me to walk away from what I loved so I could deal with all the crap.

I am grateful for Sandberg’s recent Facebook post.   Her recent post begins to tackle the patriarchal myth that hard work and success naturally go hand in hand.  Her recent post acknowledges that poverty, discrimination, life circumstances, and workplace practices – to name only a few issues  – often conspire against women (and men) to limit their success and curtail their dreams.  Her recent post acknowledges that life isn’t fair and bad stuff happens.
So to Sandberg I would say this.  First, I am truly sorry for your loss.  Really sorry.  However I am both humbled and grateful for your post where you admit that you got it wrong.  Thank you for acknowledging that many of us women are where we are not because we didn’t dream big and didn’t work hard, but because life handed us circumstances that curtailed our dreams and abilities.  Thanks for noting that for some of us “leaning in” might have involved falling on our face.

I find writing this post bittersweet.  On one hand I know that when I am 90 I will be glad that I made decisions that erred on the side of protecting Matthew’s health, my family, and my marriage. I have tried to live in such a way that my regrets will be minimal.  But yet I also know that walking away from my career and dreams hurt.  A lot. I had to let go of a great deal of who I was and who I wanted to be to ensure that the people and relationships I love thrived.  As an extreme caregiver there is no doubt that I alone sometimes got the short end of the stick.  The saintly caregiver martyr myth tells us that this is what caregivers are supposed to do.  We are supposed to sacrifice ourselves and our goals and dreams and never talk about how much it hurt or cost us.

 

I say this all this not to garner pity or congratulations for making the “right” choice.  I don’t feel I had a choice to make.  I say this only to concur with Sandberg’s recent post, and even more importantly, to remind readers that extreme caregivers often give up a great deal to care for their loved ones, including some pretty big stuff, like goals, dreams, and their sense of self.

 

Hearing dissenting voices.

Now I get it.

Last night on Facebook the conversation continued.  As many know,  I have been arguing for compassion for an overwhelmed caregiver/mother who attempted to kill her son with autism.  My point in all of this is that in cases of severe disability and total dependency we will only solve the problem of caregiver violence if we solve the problem of caregiver burden.  Or, as a good friend put it, in cases of extreme caregiving when an overextended parent finally falls apart it would be good for society to stop blaming the parent and starting helping out.  This friend was alway better with words!

I was told that by arguing for compassion for the mother I was saying that there was nothing worse than having autism.

I don’t believe I said that, but I am sorry if that was somehow heard because nothing could be further from the truth.  In fact, I value a world that celebrates diverse abilities and communication styles.  I value world where we are reminded that there can be different ways of experiencing and perceiving that world and I believe that people with autism have much to teach us in that regard if we take the time to listen. I would strongly advocate for the creation of that world and the amplification of autistic voices.

I was reminded that in the autism community some parents are trying to do things to “cure” autism and I think it was this comment that really helped me understand some of the reasons for the vigorous dissent.

I don’t think this hope for a “cure” is isolated to the autism community.  When my son was very small parents were re-mortgaging their homes and lining up to put their kids in hyperbaric oxygen chambers to cure cerebral palsy.  We never chose this option, but knew several who did despite the fact that there was a compelling research study out of McGill University debunking the “therapy”.  In fact, some kids were found to be at risk in hyperbaric oxygen chambers.  Some of the parents I knew were struggling with letting go of the image of the “perfect” child and this therapy offered, to them,  a ray of hope. They would do anything, at any cost.  Me,  I preferred to accept my child for who he was, including cerebral palsy, and to put my time and energy into creating the best life possible for him.

If I am hearing the offered feedback correctly, this is part of the fear among the autism community with the murders of children with disabilities.  Similar to the concerns we are hearing in the assisted death debate, people are concerned that these murders are evidence of a world that believes that death is preferable to disability, and in the autism community, death is specifically preferred to autism.  I would guess that some of the murders of children with disabilities are a result of that thinking, and make no mistake, that breaks my heart.

However as a blogger about extreme caregiving the situations I tend to comment on are situations where the caregiving demands seem to have outpaced what the caregiver could provide and there was little to no help offered to the caregiver.  The overwhelming situation persisted for years and the caregiver lost hope and seemed to think there was no way out other than death.

So when I argue for compassion I am not suggesting that death is preferable to autism, or disability. Not for a nanosecond.  I hear these stories about caregiver violence differently, and to be fair, I hear them from my vantage point as an extreme caregiver.  I hear these stories as saying that to the hopeless caregiver death is preferable to an unsustainable caregiver burden where they know it is just a matter of time until they can no longer care for their loved one.   I hear these stories as saying that the mother knew her child’s health and quality of life was wrapped up in her ability to care and when she could no longer provide that care the situation would become hopeless.  For both of them.  We need to remember that the case I am commenting on was a murder-suicide attempt.  For me, these situations are a symptom of utter desperation to which society failed to respond and then harshly judged. In these cases my heart breaks for both individuals.

I would hasten to add that the Latimer case is different and shouldn’t be thrown in to this discussion since that case involved euthanasia and perceived chronic pain and suffering. Including Latimer in this discussion needlessly complicates the discussion.

So, in the end,  I would agree with the comments offered that we need to value the voices and experiences of people with disabilities who are in the position to share those experiences.   I would hope that as these voices are amplified parents who have only just learned their child will live with a disability, autism included,  will come to understand that disability is not the curse they might imagine for their child.

My only addition to the conversation would be that if we are serious about ending caregiver violence, we also need to listen to the voices of overwhelmed caregivers.  We need to ensure they have the supports they require to continue to offer excellent quality of life to their children with very severe disabilities.  The two issues go hand in hand.  And, we need to ensure that caregivers’ lives don’t become the curse they have imagined, or the hell they have come to know.

 

 

Caregiver Violence: The Conversation Continues

It seems that my posts arguing for compassion for the mother who attempted to kill her autistic son have stirred up some discussion. Last night on Facebook there was a spirited discussion among a handful of parents who are raising kids with disabilities, notably autism. I waded in and was taken to task. While such conversations are often difficult for those of us who passionately support a particular viewpoint, it is good to try to find common ground and tease out our points of dissent. I appreciate such challenges to my thinking. It helps me clarify my ideas, but also forces me to see if there are places of convergence – which I think there are.

One of the parents who disagreed with my points posted an article by the Autistic Self Advocacy Network (ASAN) that can be read via this link.

http://autisticadvocacy.org/2012/04/killing-words/

The gist of the conversation on FB (as I understood it) disagreeing with my call for leniency hinged on two key arguments. First it was argued that by not fully punishing people who harm their profoundly disabled children we risk the safety of children and adults with disabilities. By not punishing parents who harm their disabled children we create a climate where violence towards those with disabilities seems acceptable. Second, it was argued that by offering leniency to extreme caregivers who harm their children we risk creating a hierarchy of value attached to people with disabilities such that the more severe the disability the more acceptable the violence.

I would argue both points. No surprise there.

My final concern about the discussion that ensued last night is linked to the article cited above. The article shuts down all dialogue about caregiver violence by resorting to an emotional guilt trip. It suggests that if we want to talk about the problem we should try to talk to the children who have been murdered. This, of course, is a logical fallacy and shuts down voices of dissent. The death of any child is a tragedy, but by shutting down the conversation about what might have lead to their murder I fail to see how we can identify solutions to solve the real, and I would agree unacceptable, problem of caregiver violence. Shutting down the conversation fails to protect future possible victims of caregiver violence because we haven’t taken time to understand how a parent arrived at a place where violence seemed like an “answer”.

First I need to point out that I strongly agree with one of the key points offered by several participants in the FB conversation who took me to task. We must ensure the safety of our severely disabled children. I just think that the way to do so doesn’t involve harshly punishing extreme caregivers who “snap”. I think the problem is more complex and requires a more nuanced response.

Disability exists on a spectrum. At one end we have people and children who are able-bodied. At the other end we have people with profound disabilities who are totally dependent on 24/7 care to survive. It is a well-researched fact that as you progress along the spectrum the burdens placed on the primary caregiver increase significantly. We also know that, presently, our Canadian society does not provide enough support to caregiving parents at the extreme end of the spectrum. Among caregiving advocates and ethicists these facts are well established.  Extreme caregivers are usually isolated, exhausted, physically and financially overextended,  and experience a range of emotional suffering including clinical depression.

No matter how much we might want to we cannot compare the caregiving burdens of parents at opposite ends of the spectrum. One parent worried that this argument suggested that it became more acceptable to kill or injure children at the extreme ends of the disability spectrum and created a hierarchy of ability/disability. I can see how she might arrive at that conclusion but I don’t see it that way. What this idea of a spectrum does do, I believe, is remind us that as we progress along the spectrum of disability the issue of caregiver burden becomes intimately linked to the increasing complexity of the care needs of the person living with a disability. We cannot separate the two and if we are serious about reducing caregiver violence and promoting the safety of those who live with disabilities we need to simultaneously hear and address the issue of caregiver burnout in a very real and constructive manner.

The Autistic Self Advocacy Network has the popular tagline “Nothing about us without us” across the top of their article that reminds us of the importance of hearing all voices. I agree with that statement. However I worry that conversations about caregiver violence become so concerned about the appearance of justice and the value of a life that we disregard the very clear voices of their overwhelmed extreme caregivers. Killing, or attempting to harm, a beloved child because you are so overwhelmed seems like a pretty loud message to me, and if we are serious about protecting people with disabilities I think we need to try to hear what that caregiver’s voice is trying to say. Part of the problem, of course, is that I am not convinced that our society is all that concerned about the lives of people with disabilities before we hear of their tragic murders. The message society is also sending makes it very clear that we are not particularly concerned about the lives of their overextended parents either

Salvation and the gift of community

 

IMG_1040Extreme caregiving has demanded that I look beyond myself and my own skill set to find others who can accompany and support me.  It hasn’t been a choice. Not for a moment. My controlling, independent streak was utterly challenged as Matthew’s mother. I learned in short order that  caring for Matthew is more than one person can accomplish, even his devoted mother.  I needed experts, additional caregivers, and a supportive collection of family and friends, both live and virtual, to be able to live this life with any kind of grace. I had to share my life, my home, and my family with the greater world to be able to care for Matthew adequately.  I will add that I am one of the lucky ones.  My life is filled with amazing people who journey this crazy difficult life with me.  Over the years, while I may have felt alone, I never have been.

Those who know me know that I resist the tendency to romanticize this journey of caregiving. This is one of the very few moments where I will do so.

Several years ago, as part of my studies in theology, I was required to write a paper about salvation.   You know, that concept that is a central aspect of the Christian faith.  Here is an excerpt of what I wrote.  Community features prominently.

Once a month I have coffee and muffins with four women.  All of these women are raising a child who is considered profoundly disabled and medically complex. These women understand the extreme stress, exhaustion, and uncertainty of raising a complex child. When we meet we collectively celebrate the uniqueness of our children, our resilience, and the resilience of our families and marriages.  We celebrate the hard won victories and support one another during the inevitable moments of sadness, anger, and frustration.  Sometimes we just drink coffee.  These women are my personal salvation.  ….They “get it” in a way that someone who has not walked a similar journey cannot. But more importantly, they show up and walk the journey with me.  Always.  For me, this group mirrors how Jesus provided and provides salvation.  He “gets it” because he chose to journey with humanity as one of us.  He lived in solidarity with humanity with whom he shared joys and suffering. I find God in the actions of my community. I find salvation in solidarity; it is in the “walking with”.

So there you have it.  The person who openly and actively resists the quest narrative of spiritual transformation as the overarching narrative of caregiving writes a quest narrative of caregiving.  But just this once. For me, community has been the gift found on this extreme journey. I think the catch, for me, is that community doesn’t necessarily make the journey easier.  Caregiving is still pretty darn difficult and I don’t want that part of the narrative lost, as it inevitably is when we veer into a quest narrative.  It is just that company along the way makes any path, particularly the difficult one, bearable.