Going our separate ways.

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Don’t worry.  My husband and I aren’t divorcing.

But we did spend the weekend apart.  A few years ago I read an article authored by another mom raising a complex child and she noted that one of the coping strategies she and her husband found helpful was spending time apart doing something of their own choosing.   This time away could be used to do anything they wanted – fishing, hiking, city fun, hanging out with friends, or silence.  The idea was that for a few days their wishes and needs took centre stage behind even their spouse’s.  They still took holidays as a family, and as a couple, but they also made sure that personal time was a priority as well.

Until recently my husband and I only talked about this idea.  Sure, he had “boys'” weekends at the cottage and I had similar “girls'” weekends, but we weren’t intentional about it.  Since purchasing our own cottage we have made a point of each having time alone at the cottage.  Since we are both introverts this works well for us.  We have both found we appreciate a couple of days where we can both unplug and engage in whatever activities speak to us without worrying about our partner’s happiness or sense of inclusion.  While away my husband tends to binge watch sports, fish, kayak, and read.  I prefer to hike, read, knit, quilt, or binge watch favourite TV shows that I never have the time to enjoy during my day-to-day life.  I worked through most of the Call the Midwife series during such retreats.

These past two weekends I enjoyed chipping away at my goal of hiking the entire Bruce Trail.  The first weekend my husband joined me at a quaint B and B and we enjoyed some lovely, kid-free couple time.  After I finished hiking we visited local wineries and ate dinner at a quite bistro.  But, this past recent weekend I was off hiking while my husband puttered in our garden, and watched the Raptors lose while sipping a cold one.  We were both happy.  My husband has absolutely zero interest in hiking 25-30 kms at a stretch.

It took me a while to get over feeling selfish every time I took off.  Years ago I remember reading the classic Erma Bombeck vignette where God and Her angel are deciding which parent should raise a child with special needs.  For many reasons I disagree with the theology behind the story, but one thing that resonated was that God believed that the parent needed to be selfish to be able to cope.  If the parent wasn’t then it was a just a matter of time before he or she became so enmeshed in their child’s journey  and needs that it would become destructive to both.  As an extreme caregiver I can totally understand this sentiment.

So my husband and I will continue to nurture our selfish streak by periodically taking breaks, including breaks that allow us to go our own separate ways.

 

 

 

 

We all have a story.

The past weekend I participated in an organized 80km group hike.  As often happens for stretches of the hike I walked alone, but there were also parts of the hike where I joined another hiker, or a group of hikers.   On the second day of the hike I enjoyed chatting with a lovely woman for about 10kms.  Her name was Paula.  We talked about our kids and our families and it eventually emerged that I was parenting a child with signifiant special needs.  Paula shared with me that her adult nephew also lived with cerebral palsy and that her sister-in-law had spent recent years speaking about caregiving.  I wish I could meet her sister-in-law.  It sounds like I would really like her!

Paula was lovely and told a wonderful, yet at times sad, story.  As she concluded around the time we were arriving at a check point, we all have a story to tell.  I wish I learned her last name so we could have stayed connected.  She told good stories.

I spent many of my early years parenting Matthew feeling very alone.  I was convinced that that my story was sufficiently unique that there were few who could relate. In support group meetings my child tended to be one of the more complex children which added to my feeling of isolation. The notion that disparate stories might connect with mine was a place in my journey I hadn’t reached yet.  I desperately searched the bookstore shelves hoping to find a book written by a mother who had lived my life.  At the time there weren’t any.

In later years, as I read about narratives of chaos thanks to Arthur Frank, I learned that this experience is not uncommon – though I won’t suggest it is universal.  When you are so deep in your own narrative of chaos, which I was at the time, it  can be hard to connect with any other stories you might hear.  It isn’t that the individual lacks empathy, or is being selfish or egocentric, but rather at that point in time their particular story is so overwhelming that it becomes all consuming.  Your view of life, at least for a while, becomes myopic.  You are so concerned with keeping your own head above water, that seeing that lots of other heads are also out bobbing in the waves may take a while.

As I began to emerge from my own story of chaos and was more able to hear other stories of caregiving (with or without the chaos part!) I found that I increasingly connected with these stories.  The stories of parents of kids with autism, cancer, or mental health disorders really resonated for me.  I could relate to many of the feelings that those engaged in spousal or elder care articulated.  And as I listened more, I found that many of the themes of my own story could also be heard in stories of divorce, death, separation, and other form of loss people experienced.

And then the light bulb went off.  I wasn’t alone. Most of us by the time we have been adults for a while have a story to tell.  It is pretty difficult to get through this life without experiencing loss, trauma, or suffering.  What perhaps was different about my story was that is was fairly public.  People who met me could see what was I coping with by simply looking at my son. Others’ stories of loss and suffering were more hidden, and less often told,  but were no less traumatic or overwhelming.

Among the special needs parenting blogs there is a strong sentiment that unless you are a fairly similar parent other parents probably don’t “get it”.  And I don’t disagree that there are parts of our stories that don’t overlap.  But I think if we listen carefully to one another we might find we have (a lot) more in common than we first thought possible.

It is too bad that our society is so afraid of difficult stories.  I think one of the reasons I felt so alone is that we often avoid sharing our scary stories because our society really prefers we pull up our socks, put on our happy face, and carry on.  Communally we  often spend a lot of time shutting  down these stories of chaos. The fact that there are times in life that isn’t possible, or healthy, is irrelevant.

Would people who are suffering feel less alone if we were a bit more transparent with our stories?  Since most of us seem to have one.

After…

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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.

 

 

Sometimes being realistic is overrated!

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A year ago we bought a cottage in close proximity to Ontario’s Bruce Trail.  I like hiking and being outdoors so I took advantage of our nearness to the trail to regularly head out for a bit of a walk in the woods.  After a while I decided that perhaps I would try to hike the entire Peninsula section which is one of nine sections of the trail – about 160km.  I liked the idea that this goal would take me to new places of the trail and experience new destinations.  I would see things I wouldn’t see if I just stayed on the part of the trail close to my cottage.  And then, because I tend to be like this,  I figured if I was doing the Peninsula section of the trail I might as well do the whole trail.  All 894 kilometres.  So I set a goal of completing what is called an End-to-End by my fiftieth birthday next year. Go big or go home.

You would think that as an extreme caregiver, with very limited time, setting ambitious goals might constantly set me up for failure and disappointment.  And sure there are times I have been disappointed because I couldn’t complete a goal I had set.  But generally speaking, because I was audacious (or stupid) enough to set goals in spite of my crazy life, sometimes without really thinking, I have enjoyed so many adventures that wouldn’t have happened otherwise. Had I stopped to consider how realistic a goal might be in light of my caregiving responsibilities I probably would have attempted very little. And yes, some goals have been re-negotiated along the way. My PhD attempt has been put on hold twice.  But heck, I have learned a lot along the way and none of that would have happened had I not just impulsively jumped into the proverbial academic pool and started swimming.

This weekend is a long weekend in Canada.  Matthew will be spending some time in respite and I will be spending the weekend hiking approximately 80km of the southern end of Bruce Trail.  Next weekend I will follow-up with another 70km of teeth gnashing hills a bit further north.  Don’t worry, I have the hot tub fired up in anticipation of the very sore legs I am sure to have at the end of all this.

Deciding to hike 894 kms might have been kind of silly when you consider my crazy life. And I may not be able to complete the goal of an End-to-End by my fiftieth.   But I plan to have fun trying and I will no doubt get a whole lot further than had I never bothered to challenge myself with a lofty goal.

Self care is not time wasted.

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My family and I had a fantastic long weekend in Toronto, but I returned home yesterday to a full day of busyness.  In addition to the normal stuff of life and caregiving, my husband wasn’t well and spent most of the day in bed, my youngest son had his spring  music concert, and my middle son had a celebratory gala with his colour guard.  Since I haven’t mastered the art of being in two places at one time I ended up at the spring concert while a caregiver attending Matthew’s colour guard gala.  It was a crazy busy day.

My days are sufficiently busy and my to do list is so very long that I have a hard time sitting still doing nothing. I can almost always think of about fifteen things to do at any one time.  Even my leisure time is consumed with relatively productive activities like sewing, walking the dog, or reading.   During those rare moments I watch TV there is a good chance you will find me folding laundry, ironing, or knitting. When I am not doing something I feel guilty.

Research tells us that extreme caregivers struggle with an almost chronic sense of burden. But when you live every day knowing that there will never be enough hours in the day to do what you need to do it can be hard to “turn off”.  For extreme caregivers it is further complicated by the fact that much on their to-do list is vitally necessary to ensure the health and well-being of another, often at a cost to themselves.

One of the first things every caregiver is told is to engage in self care.  I have already written about the fact that from a purely logistical standpoint this can be overwhelmingly challenging.  It is not as if I can decide that I won’t perform my son’s personal or medical care today because, you know, I need a break.  But the psychological side to the whole self-care challenge can be equally difficult.  When your life is a constant flurry of activities you MUST do to ensure your child’s survival and the general functioning of the family (like meals and clean clothes) it can be hard to give oneself permission to take a break.  Ever.  In the face of constant need-to-do’s it can be very difficult to create the necessary psychological space to stop.

Yesterday at about 4:3opm I briefly collapsed in a chair with a cup of tea and just sat there. I didn’t do a damn thing for about 20 minutes.  I kept thinking I should do something.  I should get up and get back to work.  I had yet to start dinner.  I had to feed people and leave for the spring concert shortly after dinner.  There was a house and  yard full of chores that needed to be done.  I was wasting time just sitting here with this cup of tea.

And then it dawned on me that this was self care.  Self care was more than sleeping for 8 hours, eating nutritious meals, and engaging in appropriate amounts of exercise.  Self care was more than another activity I needed to do before I could cross it off the to -do list.  Self-care was also creating the psychological space to do nothing.  Easier said than done by the way.

I know. I know.  It is so obvious how did I miss it?  But when your life is all about ‘doing-for’ all the time it can be very difficult to do nothing and believe that the doing nothing is actually doing something.  That these moments of seemingly doing nothing are not wasted time, but in fact a productive form self-care.

So if you are an extreme caregiver I would challenge you to try to find the time in your day to do nothing.  Even if it just for a moment.

 

 

 

Life Interrupted. Constantly.

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I started the above project in February.  One night while I was sewing Matthew decided to start screaming and not stop.  And then my kid proceeded to spend most of March in and out of the ICU at a hospital over an hour away.  And then I spent April following up with medical professionals and trying to get  back on track with life.  This sewing project has remained exactly as you see it for the better part of three months.

The project is a car themed pillowcase for a very young friend of mine.  I had hoped to have it completed in fairly short order.  For the record, I can sew a pillowcase in about ten minutes.   At the rate I am going the project might be finished in time for Christmas.  Or his university graduation.  My days seem sufficiently crazy right now that sitting down to sew seems impossible.  Perhaps during the summer months??

A few weeks ago I wrote about the fact that I would often put my coffee down, get caught up in caregiving, and not return to it until it was stone cold.  I am detecting a theme here.

Life with a medically fragile child is unpredictable and interruptions to life are common.  When the you know what hits the fan it isn’t as if one can say, “Hey Matthew, can you stop de-satting (when oxygen saturation levels drop dangerously) until I am done this pillowcase”.

My son’s care is pretty demanding on a day-to-day basis and his needs generally keep me hopping.  Medically fragile children, by definition, are unstable and that instability can translate into some pretty scary stuff.  Crises can hit at any time.  And with kids like Matthew it can be hard to determine when you might be able to return to what you were doing before the crisis. Frankly, I am often amazed I am able to get anything substantial done at all.

If I have learned anything along this journey of extreme caregiving it is that it is good to have plans.  It is good to keep living your life.  But hang on to those plans loosely and be prepared to renegotiate their terms regularly.  And sometimes you toss those plans out the window and make new plans.

It is Friday evening and Matthew has gone to the movies.  Perhaps I will go finish a pillowcase.

 

 

 

 

 

 

Making holidays work.

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Planning family holidays has always been a challenge with a medically fragile child.  Initially we would take Matthew with us, but as he grew older and become more complex that proved difficult.  Holidays with Matthew, while still possible, usually mean that his health and care needs dictate our entire holiday and that I return home exhausted and in need of a holiday.

But for a while we did it.  Matthew has camped Algonquin and we would hike his feeding pump out to a ranger station every night to have it re-charged.  Finally we reached the point where we accepted that Matthew would need to be admitted to a respite facility for many family holidays.  But even that can be challenging. First you need to book respite knowing many other families also want respite during peak times like school holidays and summer.  There are usually strict time limits on respite and guidelines around drop-off and pick-up times.  It doesn’t matter that your family holiday is seven days, you can only have five days of respite.  Or, it doesn’t matter that your plane gets in at 5pm, discharge time is 2pm.  I guess you need to fly home a day early.

And then even when you have respite booked it doesn’t always mean it happens.  Your kid can get sick.  Or kids at the respite facility get sick and respite is shut down.  One year our March break plans were thrown into total disarray because public health shut down our respite facility following a gastroenteritis outbreak.

These days Matthew is generally admitted to a respite facility if we want to get away.  But now that we have older kids we are finding we have a whole new set of challenges associated with family holidays.  Our eldest is in university while our youngest is in high school.  They have totally different holiday schedules.  Our eldest also now works up north as a camp counsellor for most of the summer.  Christmas is the only real stretch of time we could arrange a family holiday but that presents new problems.  First respite admissions tend to be difficult to obtain because it is a peak holiday time, and second respite staff themselves reasonably want some time off to spend time with their families. Throw into the mix that my kids prefer the classic Christmas at home with turkey, a tree, and family means we don’t travel at that time.

Enter the mini-hoiday.  Recently I told my husband that I wanted to do something as a family.  It was understood Matthew would be in respite – and, yes, that fracturing of the family bugs me but is a whole separate post.  We knew we could only come up with a long weekend before our eldest needed to head north so we spent some time brainstorming about what we could do. The location had to be within a day’s drive.   Our youngest is a theatre buff and wanted theatre.  Perhaps New York?  Our eldest is a sports guy and wanted major league sports.  New York could work, but how about Chicago?  Or Washington – they’re in the playoffs after all.

Guess where we’re going!!!  We’re heading a whole one hour down the road to Toronto.  But it works.  Everyone gets what he or she wants.  I get a long weekend with my kids and husband before they start dispersing for the summer.  We’ve got tickets to Kinky Boots for my youngest, and seats at the Jay’s game for my eldest.  If the Raptors go to game seven we’ll likely go watch the game on the big screen outside the Air Canada Centre.  We’ll ride to the top of the CN Tower where my eldest and I will cower in a corner since we’re afraid of heights while my youngest tap dances on the glass floor.  We’ll visit the aquarium and catch a movie.  We’ll eat out and sleep in.  I think we’ll have a blast.

As a family we have had to come up with some happy medium of including Matthew wherever we can, but also acknowledging that sometimes we need to be able to enjoy ourselves without the demands of his care.  We have also had to work within the fairly restrictive bounds of respite and life with a medically fragile kid.  I think we’ve done a decent job getting creative and making sure all of our kids have happy family memories.

I can’t wait for this weekend!