Writer’s Retreat

One of the great things about being a student is that it affords the sort of flexibility I need to manage my caregiving responsibilities.  I figured out several years ago that any form of paid employment, outside of small bits of a contract work, is likely unrealistic.  Juggling a job while also managing the unpredictability of Matthew’s life and schedule just ensured I had lots of grey hair and let a whole lot of people down.  But while being student offers tons of flexibility, I do actually have to work.  Which is sometimes easier said than done in my life.

I consider a successful day a day where I am able to work for about 4-5 hours, usually when the kids are at school/day program.   Sometimes that 4-5 hours happens in smaller chunks, and sometimes I get a long stretch of time.  It really depends on my life.  The phone rings, wheelchairs need repairs (repeatedly), and the list could go on.  I consider a good week a week where I can string together 3 or 4 of those productive days.  Five days almost never happens.  Three has been the norm in recent weeks.  Between appointments, illnesses, day program cancellations, nurse cancellations, and so on, a full week just hasn’t happened.  During one particularly frustrating day I suggested to my husband that a writer’s retreat would, once again, be helpful.

A few years ago I was struggling to finish the coursework for my (hoped for) PhD.  Life was crazy busy and I was becoming a tad frantic.  The deadline was looming and I needed to finish a paper, but I couldn’t seem to find the quiet to do so. My stress and panic was mounting. I do not do well writing papers at the last minute.  One day in total frustration I blurted out to my husband, “I will only get this paper done if I leave”.  He nodded and said, “that is a great idea, book a hotel”.

After a bit of discussion we discovered that renting an (off-season) cottage was far more cost effective.  This was before we owned our own retreat.  I booked a place and packed up my computer, books, a week’s worth of food, a couple of bottles of wine, and left my family.  The end result was a paper I was happy with and a much calmer spirit.  And probably a family that didn’t spend a week or two walking on eggshells because mom was so stressed out.

I love my family.  I love our family life.  But ask anyone who has spent any time in my house.  Our house is a whirlwind of activity.  It is full of people, and dogs, and caregivers, and general busy-ness.  And most days I love it.  But periodically the introvert in me needs to get away, particularly if I am trying to work my way through a demanding paper exploring all sorts of philosophy I don’t really understand!!!  So here I am at our cottage for three and half days trying to finish the draft (emphasis on that word) of my last (God-willing) comprehensive paper before I knuckle down on my dissertation.  I have written four comps (long story involving switching universities) so I am ready for this part of my journey to be done.

Here I can hear myself think. Something that I have discovered is useful when trying to write a paper.  My husband and youngest joined me  here for the weekend to open the cottage and then they left for home leaving me with well-wishes, my computer,  and a stack of books.  As I settle in I find I am preparing for something that is akin to a brief silent retreat.  There is no one to talk to, save one of our dogs.  I am hoping that not only will I come home with a decent draft of a paper, but I will also come home with an uncluttered spirit.

Wish me luck.

Where are the mothers?

Today, as I was slogging my way through a paper I am trying to finish, information about an upcoming conference scrolled across my computer screen.  The conference explores issues related to spirituality and disability and it looks fantastic.  Every year I hope to attend the conference and every year I cannot for a long list of reasons, most of them related to the fact that I am the caregiver of a really complicated, high-care kid and getting away is equally complicated.  The last time the conference was in Canada I had plans to attend, but unfortunately the gathering was during a stretch of time when Matthew’s medical status was very fragile.  Such is life.

 

This year’s announcement shared that the keynote speakers are all fathers of kids with disabilities.  That is great.  The lived experience of parents and caregivers is an important part of our ongoing conversations about faith, care, and disability, and I am thrilled fathers are speaking.  However the fact that all the keynote speakers were fathers leaped off the page at me.  I wondered if a mother might be speaking at any time during the conference.  I went and looked at the list of conference speakers, and sure enough, the majority of speakers were men.  A few women are speaking but it is unclear if they are the mother of a child with disability.  I don’t think any are.

 

We know why mothers aren’t presenting.  99% of the time mothers are the ones at home providing care.  Mothers of complicated kids are rarely the person who are pursuing careers, academic or otherwise.  Mothers are at home changing diapers and wrangling appointments with specialists.   The reasons for this are simultaneously simple and complex.  Any real conversation would require detailed social analysis – something well beyond what a blog can offer.   But definitely a topic that ought to be unpacked at a conference exploring issues related to disability.

 

Home care supports are inadequate for families with complicated kids so someone has to stay home.  Since men still often earn more than women, even when in similar careers, financially speaking the decision often is clear-cut for families raising children with very expensive needs.  Throw in the mix that society expects, no, often demands, that “good” mothers sacrifice for the good of their children, and we find ourselves with a statistic that shows that it is the mother who stays at home. Almost always.  Physical and emotional well-being, financial security, hopes and dreams – all of it is expected to be laid on the alter of good motherhood.  Sacrifice is an unspoken expectation, but the endpoint is rarely defined.  How much is a mother to sacrifice?  Society usually answers:  everything.

 

So while I am thrilled to see fathers of children with disabilities speaking at an international conference exploring faith and disability, I am profoundly disappointed that these academics, people interested in making the world a better place for people with disabilities and those who care for them, did not ask one very important question.

 

Where are the mothers?

 

 

Broken.

This past year the Hospital for Sick Children, or Sick Kids as it is commonly known, has released a series of ads.  These ads are meant to show the strength and indomitable spirit of children, as well as their families, who live with serious illnesses.  The most recent ad shares, in a raw and powerful manner, the journeys of mothers of sick children.

If you haven’t already viewed the ad you can see the it here…..

http://www.citynews.ca/2017/04/10/powerful-new-sickkids-vs-ad-turns-camera-moms/

I will admit to having a love/hate relationship with the ad.  I love the ad because it shows the invisible lives of caregivers.  Most of us are programmed to put on that brave face that you see at the end of the ad.  The one where we walk into the room ready to take on the world and move mountains to make sure our kid is okay.  There is intense pressure on parents, in particular mothers, to present that face to the rest of the world.

For me, what I hate about the ad is that it shows the world what I look like when the world isn’t watching.  I am someone who is pretty private about my emotional breakdowns.  I like the world to think that I have it all under control, which is of course a big fat lie. But I digress.  As far as the world is concerned, it doesn’t matter what life will throw at me, I can handle it.

But this ad totally hits the mark.  I have sobbed in the shower.  I have beaten a steering wheel.  I once shredded a pillow at three in the morning.  I kicked a wall so hard (I am a soccer player) that there was serious concern I had fractured my foot.  In the moment it was either turn my anger and frustration on some inanimate object or cause some form of bodily harm.  The wall and the pillow lost those decisions.

And then there was the suicidal ideation.  When Matthew was about seven I really began to wish I could go to bed and simply not wake up.  I had no real desire to die.  I just didn’t want to live this sleep-deprived roller-coaster of pain and isolation any more. The idea of checking out became pretty darn appealing.  Matthew was really sick and in a great deal of pain and nothing I could do made it better.  Nothing health professionals did made it better.  I just had to watch him suffer pain he did not understand and did not have the ability to identify to those who might help.  The suicidal ideation moments were, in fact, more frightening than the moments I share above because the pain had moved so deeply within me that it could not be released in any way.  It simply threatened to eat me alive.  It robbed me of hope.  Life seemed to be a hamster wheel of thankless caregiving duties and shared suffering between my son and I.  Tomorrow promised to be the same as today and I had no sense the hamster wheel would stop turning. Ever.  The only thing that kept me going those years was the fact that I had three children, and a husband, who desperately needed me to be okay.  Which is why you never saw the broken Laura (I find it difficult to share this even now).  To show that part of me to the world was unthinkable. And, to be brutally honest, the world let me know on no uncertain terms that it wasn’t particularly interested in seeing a broken Laura.  I was expected to be fine.  The world made it clear that it had better things to do than to help an overwhelmed caregiver.

And so I am grateful for this ad.  Caregiving is often presented as the great spiritual journey of growth and learning.  Caregiving is often portrayed  as a rare opportunity to give humbly of yourself to someone who is very vulnerable.  And, yes, it is all that.  But a lot of the times it also really sucks.  The caregiver is the one who spends all day, every day, watching someone they love suffer. As a mother I am programmed to protect my child with every fibre of my being and it threatened to destroy my soul when I could not.

Until we understand that the story of caregiving includes these moments that are rarely shared with the our larger community I am worried that many caregivers will continue to suffer alone, in silence. I am worried our communities will continue to believe caregivers are fine, because the larger world needs them to be fine.  Part of helping caregivers is ensuring these stories, and I am pretty sure they are fairly common, start becoming part of the communal narrative of caregiving.

Best Advice. Ever!

Matthew started out life in the NICU and a with very poor prognosis.  He was diagnosed with cerebral palsy by six months of age.  I probably knew he had CP by about six weeks of age.  Every single red-flad was present, and as an OT I had the training to see all of them.  Because he was labelled as a “special needs child” very early in life I was inundated with feedback from a wide array of sources about my new life as a “special needs parent”.   I received all sorts of predictions.  My marriage would surely not survive.  My journey of caregiving would be the most meaningful thing EVER.  Umm.  Sure.

 

I also received advice.  Lots and lots of advice. Some of it wasn’t very helpful.  Like the best way to avoid a feeding tube was to let your kid get good and hungry because then they would surely eat. Spoiler alert – that one is crap.  Thankfully I had the sense to ignore it.

 

The best advice I received? Choose your battles wisely because there are more battles in this life than you can possibly imagine.

 

 

I cannot tell you how helpful that one sentence has been over the last 18 years.  That sentence conveys two really important pieces of information.  First it lets you know that your energy is going to be stretched and that you are simply not going to be able to take everything on.  You’re going to have to be able to identify what is really important and spend your energy there.  The second is the more obvious one – that there are more battles than you EVER expected. Let me tell you.  That part is true as well.

 

When I gave birth to Matthew I was an occupational therapist.  I had been trained to understand the special needs world.  I spoke the jargon fluently and I understood the multiple funding silos involved in the world of disability and the difficulty managing those silos.  But I really didn’t “get” how challenging it would all be.  Or how adversarial it would be.  Let me be clear.  There are some pretty wonderful people out there helping families like ours.  But sadly their hands are often tied since they live and work in the same complicated and unfriendly system.  The system “supporting” complex kids is tortuous, complicated, underfunded, and often not particularly user-friendly.  It is full of roadblocks and challenges, many of them needless and silly,  that frustrate the most dedicated professionals and parents.  And at times the system is outright callous and staffed by totally insensitive administrations that seem to see people with disabilites as nothing more than a bundle of (often high) costs, and body parts.  I can remember one meeting where my son was talked about as a collection of body parts.  The discussion involved who was responsible for what body part, in what way, and at what cost, rather than acknowledging the fact that he was a person worthy of dignity and care. It was one of the most dehumanizing and insensitive conversations I have witnessed – and I have lived through a freaking malpractice lawsuit people!!!

 

 

I quickly learned that if I engaged every possible battle I wouldn’t have the energy to take on the ones that really mattered.  So early on I asked myself how on earth I would figure out what battles were important.  Wasn’t everything important?  Wasn’t my son worth my going in to every situation ready to duke it out for whatever he needed?  Isn’t that what a good mother did?  I decided it wasn’t. I decided that being exhausted and angry all the time would not translate into good parenting.

 

So in the early days of parenting Matthew I developed what I call my “triage list” that I still use to this day.  And while I always try to address situations collaboratively and constructively, and often that works, there are no shortage of possible battles when you raise a kid with special needs.  Trust me.

 

In order of priority I decided I would engage an issue if it did any of the following:  1)  Compromised or threaten to compromise Matthew’s health or medical stability, 2) Compromised or threaten to compromise Matthew’s quality of life, and to a lesser extent but still important, 3) Compromised or threaten to compromise the quality of life of our family or of individual family members.   Numbers one and two were pretty straight forward.  If I had concerns about Matthew’s health or quality of life I was pretty direct about my concerns and and need for a satisfactory response.   An example would be when the hospital left Matthew in a bed I had stated was unsafe, ignored me, and then found Matthew on the floor tangled in IV lines at 3am.  That was a battle I was not only prepared to take on, it was also one of the few situations when Fang was released from her cage.  The ensuing conversation wasn’t pretty, but Matthew has had 1:1 care to ensure his safety every hospitalization since.

 

When it comes to number three, the QOL of the family or of family individuals, I tend to take a more nuanced view and I also try to factor in how my quality of life can also be adversely affected by the ongoing stress of “battle”.  Sometimes the battle is worth it and sometimes it makes sense to walk away.  For example, two years ago I decided that navigating the school system had become unsustainable.  I had been advocating (battling) for years to have Matthew’s needs met, and to have Matthew viewed as a valuable, contributing member of the community, but these conversations seemed to fall on deaf ears. Matthew would never function at grade level.  He required very heavy, complex, and expensive care. Matthew was always being spoken of as a burdensome responsibility. Decisions were made about his care based on union agreements rather than his needs or best practices. The above-mentioned body part conversation happened at as school meeting.   I had one senior administrator tell me “this is how the system works, get used to it”.  Most conversations about Matthew felt dehumanizing.  Every meeting, every phone call, EVERYTHING, was a battle waiting to explode and I was tired of it.  Constantly advocating for my son in a system that didn’t seem able to see his potential was draining beyond words. Weighing the energy required against the issues of Matthew’s health and quality of life, not to mention how all the battles adversely affected my quality of life, eventually made the decision straight forward.  We decided the battle was NOT worth it and we pulled him from school and haven’t looked back.  Best decision ever.  I am sure I have fewer grey hairs as a result.

 

I cannot remember the parent who told me to choose my battles wisely.  I know it was a parent.  But that one piece of advice has been one of the most influential sentences in my life.  I am grateful.  And when young parents ask me about any advice I might have to offer I tell them to sort  out what is important to them and to use that information to choose their battles wisely.

 

Someday I hope to live in a world where that advice isn’t needed because we live in supportive and inclusive communities that support people with disabilities without question or difficulty.  But sadly we’re not there yet.