In Sickness and In Health

Every once in a while it is fun to post something slightly unrelated to caregiving. Though, I think you could make a very strong argument that for those of us who are fortunate to have one, a solid marriage with a supportive partner is a huge advantage for extreme caregivers.

 

I was recently reading an autobiography and stumbled across the couple’s proposal story. The manner of the couple’s proposal, in many ways, tells readers a great deal about the two, their values, and their hopes for the future.

 

I began reflecting on my own proposal and arrived at a similar conclusion. Bill and I are fairly practical people, even boring. We can be painfully frugal or selectively spendthrift depending on the situation.  We are that weird couple who will happily wear thrift store clothing and hand-me-downs, but won’t bat an eye about private school tuition bills so our children can attend a faith-based school. We are realistic and pragmatic, sometimes to a fault. We aren’t particularly romantic. Like many young couples we started out fairly close to the “poor” part of the vows since we were both students.  And we have certainly done the “in sickness and health” bit – at least within our home – since we care for a medically complex child.

 

So maybe it makes sense that when Bill proposed I was flaked out on the floor of the apartment he shared with a friend.   I was battling a nasty head cold and felt like crap. We were watching television – the Blue Jays if I remember correctly. It was a day or so before my birthday. Apparently Bill had planned to wait for my birthday, but decided this was the moment. He grabbed the ring from his bedroom, a family heirloom (lovely, sentimental, and frugal!) and proposed over a steaming cup of Neo Citran. Yup.  Neo Citran!  His words were something like, “I had planned to wait until your birthday, but I can’t. Will you marry me?”

 

Not particularly romantic. Certainly frugal and practical – there was no expensive dinner, entertainment, or wine.  And, so it seems,  the sickness thing was incorporated early on in our relationship. Yup. A proposal that captures the bulk of our marriage story.

Anxiety: Collateral Damage

12045764_10156033432365247_1049128083342841006_oYesterday I stumbled across a blog post about woman whose child was born via emergency c-section following the discovery of a cord prolapse.  She was awake during her child’s birth and shared that she was prepared for the worst, but was hoping for the best in terms of the outcome.  Her child emerged pink and squealing and scored an Apgar of 9/10.  I am happy for her.

Such posts are hard to read when your story ends up being “the worst”.  Matthew, like the baby in the blog post, was born following a discovery of cord prolapse as well.  However our birth story and the resulting journey is far less rosy.  I was unconscious for the birth. Matthew’s first two Apgars were 0/10 and 0/10 – which means he was completely lifeless.  He did not have a heartbeat until about minute 7 and did not attempt to breathe until about minute 9.  We were told that minute 10 is when resuscitation efforts are usually halted and Matthew came in just under the wire.  The rest of the story, in many ways, is told via this blog.

The internet is full of stories of happy endings and it can be hard when yours doesn’t follow that script. I sometimes find that the collateral damage of being that seemingly rarest of statistics, the story that doesn’t end happily, can be very difficult to live with.  One symptom I constantly struggle with is the need to tamp down my chronic sense of anxiety that bad stuff will happen.  I have to always fight the temptation to stack bricks in my emotional wall to ensure that I am prepared for the next major life blow.  I don’t like living this way and it isn’t healthy. I make an intentional effort to manage my anxiety with cognitive behavioural strategies, and for the most part I think the strategies work.  But it can be a struggle at times and sometimes I find that when I least expect it anxiety sneaks up and taps me on the shoulder – or smacks me upside the head.

I was always a bit of a worrywart as a child according to my mother.  I was diagnosed with migraines at the age of ten and these were linked by a doctor to my sense of chronic anxiety and need for perfectionism. Whether that is true I don’t know, but I took the message to heart at a young age.  Despite ongoing strategies to manage anxiety it can always lurk in the background.  So while I apparently come to worrying naturally, raising a fairly complicated kid certainly hasn’t helped me manage my worrywart tendencies.

Last night about 1am my youngest son starting vomiting and came to get me for some help.  I found him some Gravol, settled him into the guest bed (he sleeps in a loft bed – not good for quick trips to the bathroom) and found him a bucket just in case.  And then I went back to bed myself.  And didn’t sleep.  The rational part of me knows that my son probably has whatever stomach bug is doing the rounds.  I know that today there is no real reason to worry – that after a day or two of Gravol, jello, popsicles, and Gatorade he’ll likely be back to his grade ten classes, hanging out with this friends, cross country running, and rehearsing for the school play.  But last night at about 1:30 am none of the cognitive behavioural strategies I tend to resort to worked.  As I tossed and turned in bed I ransacked my brain wondering if there was anything other than a virus I should be worried about.  I had to fight images of David becoming worryingly ill.  Knowing that these thoughts were both irrational and unhelpful after a few of hours of not-sleeping I resorted to distraction techniques that tend to help when I am particularly worried.  I am not sure I slept but I began to worry less about my son and regain some sense of perspective.

Being someone who has had the “worst happen” to their child I have found that living with a chronic sense of anxiety, particularly when it comes to my children and health, is one of the side-effects – collateral damage of a deeply traumatic birth and the ongoing journey with a medically complex child.

Doggy spiritual care!

In July our family acquired a new puppy named Archie.  He is a wonderful pile of floppy black fluff and we all adore him.

 

Most mornings I bring Archie into Matthew’s room during morning care.   At first it was primarily to keep an eye on him while we established housetraining.  However another priority for any dog in our home is to socialize the puppy to Matthew’s morning routine and care.  The last thing our household needs is a dog who becomes frightened, or worse aggressive, around medical equipment.  The best way to ensure this doesn’t happened is to make sure your puppy is exposed to a range of experiences, people, and “things” at a very young age so they learn not to be afraid.  Mornings are when Matthew’s care is most intense and virtually all equipment is used – slings, wheelchair, IV pole, feeding pump, syringes – so it was an excellent time to have Archie nearby being exposed to the equipment.

 

Over the weeks Archie has been with our family I have developed a routine of having Archie visit with Matthew while I do the prep work for Matthew’s care.  Archie licks Matthew’s ears and generally visits while I draw up meds, prime the feeding tube, and gather all the supplies I will need to get the kid going.  Once I actually need to step in to provide care I usually plop Archie on the floor nearby and get to work.  Usually Archie curls up under the bed or on the nearby Lay-Z-Boy we have for our night staff.  That is, until today.

 

This morning once I was ready to get to work I plunked Archie on the floor and started puttering around Matthew.  Archie immediately took five paces back from the bed and took a flying leap of black fluff, floppy ears, and wagging tongue, and landed squarely on the waist height bed. It was an impressive leap.  He then proceeded to cuddle up to Matthew making it abundantly clear that it was my job to simply work around him.

Mornings are an intense time of care.  There is a lot to accomplish in a fairly short period of time.  I need to get Matthew up, changed, washed and dressed, while also organizing his meds and feeding tube.  We have to squeeze in a masking of inhaled meds and then clean his mouth and teeth before we sprint out the door to his day program.  The last thing I need is a puppy making every step more complicated.

 

And yet I left Archie where he was.  Seeing Archie and Matthew so clearly contented was, for me, a beautiful moment in an otherwise labour intensive stretch of the mundane. For it was a moment, albeit brief, of a dog providing intimate care of the soul, not just for Matthew but for me as well.  I call it doggy spiritual care, and today, it made me smile.

I am the coyote.

(Image inspiration thanks to a good friend and fellow extreme caregiver who knows who she is!)

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I subscribe to many caregiving blogs, in particular blogs that explore the lives of many mothers raising kids with disabilities.  Among these blogs there is a ubiquitous narrative of the warrior mother – a fierce, superhero mother who rises above all odds and becomes a super-caregiver of sorts.  As a mother raising a pretty complicated kid I get the part about becoming a fierce advocate for your child.  Life demands that pretty quickly.  But the part of the narrative I openly struggle with is this idea that we extreme caregiving mothers can walk through our days smiling in the face of suffering, and transforming moments of suffering into journeys of triumph and growth.  This public perception of the superhero mom exerts chronic pressure on many caregivers to take difficult moments and turn them into something inspiring and triumphal, even if one’s story more often feels like you’re the coyote being flattened by a train rather than superwoman leaping tall buildings with a smile on her face.

 

 

There seems to be the ever-present need in our society to take any story, even stories of difficulty, suffering and pain, and make them into some form of a Disney movie. As a result of this constant pressure to turn life events into a Hallmark moment it can mean that for many of us who have difficult stories, telling one’s story starts to feel like you are being overly negative when, in fact, you’re being realistic.  As someone who talks about caregiving in a brutally honest manner I have found that by being honest – by talking about the difficult of being the coyote on the train tracks – I sometimes get quickly labelled as a pessimist – a negative Nellie!

 

I struggle with this label, because I generally feel I am an optimist, granted one operating within the realities of my life.  I would argue that it has been my hope and my ability to see favourable outcomes during difficult moments that has seen me through a lot of the hard stuff.  But early on in this journey I also learned to nurture a very realistic hope.  To hope with wild abandon, while momentarily helpful, would often in the long run leave me chronically broken-hearted and bereft.  In other words, it was good to live in hope knowing I was the coyote and not the roadrunner!

 

I went through a period of time when I wouldn’t publicly share my story because talking about being the coyote began to feel too dark.  I wasn’t conforming to the expected story lines about disability and triumph and there was this sense that I was, at some level, disturbing the listener’s more Disney/superhero version of disability and/or caregiving.  That by being realistic I was interfering with an expected happy ending.  In the case of other parents raising special needs kids I was worried I was crushing hope which was something I really didn’t want to do. But my story didn’t feel like a Disney movie and I was tired of bending my narrative to some storyline that made others feel good about disability or caregiving while leaving me alone, unsupported, and frustrated. I was also worried that by feeding into the constant narrative of caregiver triumph I was perpetuating this stereotype of the superhero caregiver when I was interested in nurturing a more nuanced and realistic story of caregiving. I wanted to talk about the very real difficulties of living my life as the coyote rather then pretending I was superwoman.

 

These days I speak openly about our story, warts and all, in a variety of contexts. I talk about lying prostrate on the train tracks as trains run over me.  It can make for some difficult stories.

 

A few weeks ago I gave a keynote address at a nearby university talking about the demands and quiet desperation that many extreme caregivers live with, but are often implicitly and explicitly required to mute.  Society exerts a fair bit of pressure on caregivers to offer an inspiring and hopeful story even amid situations that are brutally difficult.  Even as I have grown more comfortable with telling my story of being the coyote on the tracks I struggle with situations when I get up and share my story with unadulterated honesty.  I am chronically anxious about being seen as a dour, overwhelmingly negative person when my goal is to bring a more realistic and nuanced story of caregiving into the public sphere. It is hard to tamp down that societal pressure that requires one to smile and offer an inspiring, feel-good story when one feels like a flattened cartoon character.

 

A few years ago I was speaking to medical students and I was asked a question about what sort of profound learning I had acquired from raising my son.  I didn’t answer it.  Rather I pushed back and called the students out about romanticizing difficult journeys.  I reminded them that as physicians they had an obligation to hear all stories and not to structure questions that required people to offer a particular type of palatable answer.  If I am required to always offer a narrative that turns my son’s difficult journey and suffering (and mine by extension) into a journey of personal growth and learning then, to me, that story not only becomes offensive but it perpetuates a world where people who are suffering feel their stories are taboo.  This need for happy stories supports a troubling public narrative that mutes voices of suffering, and as a result, keeps many suffering in silence while ensuring the rest of the world keeps the happy endings they so desperately need.

 

 

Let’s avoid demanding that the coyote tells the roadrunner’s story.  Let’s ensure that all stories have a place in our community.

 

 

 

People first!

Normally I focus this blog about caregiving related issues. I tend not to wade into the discussion of disability related issues because there are strong and eloquent advocates who already speak to those important concerns.

 

However, this morning two posts scrolled across my Facebook page that got my head spinning. Welcome to my morning pre-coffee.

 

The first was a photo of a gorgeous baby girl. The caption to the photo said “just because I have Down syndrome doesn’t mean I am not beautiful”.

 

The second post was a letter authored by the mum of internet sensations Ollie and Cameron. Ollie and Cameron are three-year old UK twins who delight us with their adorable antics and playroom dancing. Most mornings, these days, my Facebook feed is full of whatever stunt Trump pulled lately and the potential risk of him “leading” the country south of us. Seeing Ollie and Cameron on my FB feed boogie-ing together, or talking about their nursery school day, restores my faith in humanity and gives me a reason to smile. Ollie and Cameron, by the way, also happen to have an extra chromosome and live with Down syndrome. The letter their mum had written was voicing concern about a recent article that described her boys as the Down stars of the internet, rather than simply the spirited boys they are.
You see, in both these situations the children involved were being labeled, first and foremost, by their disability rather than their humanity, interests, abilities, and so on. Articles and memes such as the two noted perpetuate this idea that people with disabilities are seen as their disability rather than their personhood.

 

My son has, over the years, been variously described as “a CP boy”, “a quadriplegic”, “a handicapped boy”, and so on. All of these descriptions limit Matthew to his disabilities rather than what I consider his important and valuable qualities. Matthew is an 17-year old boy who loves cartoons, music, stories, sensory activities, swimming, and bubbles. Yes, he happens to live with some complex disabilities but he is NOT his disabilities, just like Ollie, Cameron, and the beautiful baby without a name (don’t get me started on the fact that her diagnosis is more important than her name!) are not Down syndrome. They happen to have Down syndrome.

 

As a graduate student in the 90s it was hammered into me by my advisor that one always wrote about people with disabilities as “people with disabilities”. Their personhood always ought to be stressed and seen before their disability. Their disability does not define them and as someone writing about disability I should always write in such a way that respects their humanity, talents, abilities, and interest – not in spite of their disability or as some form of disability porn, but as their defining and important features. It may have been one of the most important lessons of my graduate school years, particularly given the fact that I went on to parent a child with significant disabilities.
So let’s all commit to something. See the person before the disability and in situations where the disability is noted as the defining feature call it out!