When one has a complex or mysterious problem,  the path of referral goes something like this:  see a generalist, get referred to a specialist who knows the condition, get further referred to a sub-specialist who does the procedure for that condition.  The scope gets more and more narrow, like a funnel.

I think many patients, and parents of young patients, see this as a journey down a single, inevitable path leading to the grand conclusion.  Not as a complex maze that could shoot an unwitting participant down a dark tunnel that lands herself in one of many possible chambers.  Viewed through a wider lens, which chamber you end up in can seem almost random.  Depends on who you saw last.  What they knew.  What they read.  Whom you’ve met so far.  Whether or not you liked the last doctor.

Uberspecialists, like the one guy who does the one procedure for the rarest of conditions, are like special interest groups.  They have their own funding, their own agendas, their own perspectives.  Like all good scientists and researchers and engineers, they are simply trying to prove a thesis.   To support an idea that has possibly been years, decades, in the making.  They are looking to see if your case fits with what they have to offer.  They are assessing to see if you are a good candidate and whether or not you will be deemed a successful outcome.  In other words, do you fit their profile?

Here’s the problem:  If you do fit the profile, it’s natural to assume that whatever they’re offering is the right solution.   Finer minds than yours and mine have spent a lot of time and money to figure out this one thing.  And the specialist doesn’t have the time or inclination or even perspective to state his or her special interest.  This path of referral can take many months, and sometimes years – the legitimacy of the path itself is not called into question at that point.  The specialist assumes you’re pre-qualified enough and you, the patient or parent, is just happy to talk to someone who finally knows what you’re going through.

I remember the moment I clued in to this.  The neurologist was looking Owen up and down, thinking out loud.  She recited a high-level checklist, crossing them off one by one.  Fixed postures?  No.  Is he big enough?  Yes.  Parents understand the surgical risks?  Yes.  Then, as I relayed in my last post, she said something like, “Well then.  There’s no reason not to.”  Hm, I thought.  That has a ring that’s not sounding quite right.

(This experience reminds me of the process around discovering Owen’s deafness.   He was diagnosed at Sick Kids, around 1999-2000.  Not sure what they do now but back then, when hearing fell out of a particular decibel range, children were referred immediately to the H.E.A.R. program.    Hearing Evaluation And Rehabilitation.   Also known as the cochlear implant program.  No other options were presented; Owen was put on the list and we started the assessments.  When I inquired about other options, they said there were none – they of course meant that there were no other interventions that would restore or simulate hearing, and they were right.  But I could easily have taken  that to mean ‘this course of action is the only reasonable thing to do’. )

No reason not to.   From her perspective, the doctor was absolutely right.   And now it’s up to me to figure out what else is right, and also good.

All of this lead up to talk about the one blog I do follow religiously and on which I sometimes comment: Claire’s blog. Claire and I share a path that few other of our fellow bloggers share: our children are severely disabled. Things like inclusion and school and friends and picky eating and inappropriate behaviour are not on our radar screens. Instead, we think about meds, nurses, suction, funding, quality of life, and quality of death. And we ask ourselves “when am I ever going to go on a real vacation?”, each of us knowing full well when that will be.

On the whole, Claire’s blog is thoughtful and intelligent with a large dose of folksy humour and whimsy thrown in. I’m sure she won’t mind when I say that I tend to skip over her musical interludes :) I was grateful when she separated out her mission to rid the world of the Ashley X treatment - gives the issue its own home (which it deserves), and returned her blog to a more personal exercise.

Claire – your candidness and generosity are inspiring. Best kind of blogger out there.

(photos: taken on C’s iPhone, using the Hipstamatic app)

In acknowledging to myself this rite of passage – experiencing the death of a family member, from however afar – I am looking upon Owen again with a watchful, wondering gaze.   I am always, always deeply aware of his fragility.  As I’ve written many times in this blog, I anticipate his death, at some level, daily.  Honestly, I can’t help it.  It’s kind of obvious.  Anyone experiencing a few minutes with him would wonder how long his little, twisted, wheezing body can sustain itself.   My thoughts are not always conscious, but they’re there.

When I was a young woman and imagined what being a good parent meant, I would think in terms of achievement.  What my child will ‘become’ as an adult will be a reflection of how well he was parented.  And so I must do all the right things to prepare him for adulthood and send him on the road to gathering up all the good things in life:  an education, a career, a family, lots of stuff, secure retirement.  Done.

When I had Owen and started to realize he would not likely have any of these things, I re-jigged my thinking.  Ok, so none of that – instead, he’ll make progress in his own way.  We’ll start with communication so he can direct his own care.   I’ll give him vocabulary, ways to respond.  Blink, push the button, move the mouse, vocalize.  Something, anything.  Years of pictures, storyboards, software, devices, charts.  And nothing.  Frustration and wasted time. His body is truly so broken there is not a single repeatable action he can control and turn into intentional movement.  Oh and plus he’s deaf so maybe he doesn’t even understand anyway.

Alright I thought.  Maybe his life isn’t about all the clutter of language.  Instead it can be about love, experiences, sensations.  Isn’t this all we remember on our deathbeds anyway?  Maybe the gift of Owen’s existence is the gift of this wisdom and lucky me I’m not even old yet!   I’m totally on board with this paradigm shift.  It offers a grace and simplicity to our lives and excuses me and his other caregivers from the frustrations brought on by constantly striving to improve.  The relief of this is real.

What it doesn’t fix is the sheer grind of intense physical care and management.  Not just regular activities of daily living (feeding, diapering, lifting, dressing), but ever-mindful presence to make sure he doesn’t hurt or kill himself.  He can’t be left for a moment.  Even while sleeping.

This is not going to change much.   The potential for deep brain stimulation is still to be explored, but even that won’t change things dramatically.  Just possibly make it all less bad.

Let me take inventory.  Achievement?  No.  Communication?  No.  Improved health?  No.  Improved management?  No.  Ways to stop things from getting worse?  M-a-a-ybe.  An inevitable ending?  Yes.

So to bring this around again: I am watching Owen’s life continue on a steady path of relentless sameness, while the rest of us are growing up and getting older.  He may live another 20 years, but his next big change will be to die.   Which I imagine is just like my grandmother’s experience in the last weeks of her life.

In this same vein, I accept Owen’s eventual death as the inevitable conclusion to his life.  (I just amazed myself with the stunning stupidity and wisdom of that statement!)   This acceptance frees me to simultaneously savour my time with him now and look forward to the day I am released from my crushing responsibilities.

I say ‘frees me’ but maybe I don’t mean that.  Too happy a term.  Rather, it binds me.  Confuses me.  Fills me with sorrow and grief.    Acceptance does not anywhere near mean liking or even understanding.   It’s a giving-in to the ebb and flow of life and truthfully acknowledging Owen’s passages – even if, unlike my grandmother, he skips a few steps.

Owen is a sweet, endearing boy by all accounts – which I think is the perception we all have because he smiles a lot and has a beautiful face.  But it’s not like he makes me tea or tells cute jokes at the dinner table – Owen actually doesn’t, can’t, do anything.   And not only does he not do anything, he’s always at risk of harming himself – which means he must constantly be done to.

Whether through mechanical or manual means, someone must feed him, bathe him, change his diaper, give him meds for reflux/seizures/spasticity/sleep, hold him just right so he can fall asleep without jolting himself awake, suction mucous from his mouth so he won’t choke.  He can’t sit in his chair comfortably for more than 10 minutes. He can’t lie on the floor safely for more than 10 minutes. No one can hold him without tiring for more than 10 minutes. If I’m roaming around the house doing house-y things, I pick him up and carry him from room to room so I can ensure he doesn’t roll over on his face or choke on secretions or wedge a leg in a potentially injurious position. 100% of his caregiver’s time is about making sure he stays alive, clean and injury-free.

I joke sometimes about how much it takes to ‘neutralize’ Owen, kind of like the way we try to make machines and processes carbon-neutral.  If I were to contract out Owen’s care, it’s the equivalent of four full-time people.   Three to work three eight-hour shifts a day, and one as back-up and admin/paperwork. And this is to maintain life, not necessarily improve or achieve something.

I’m not sure what my point is exactly. Only that recently I have taken to laughing hysterically, thinking about how absurd it all is.

When a blog topic occurs to me, I let it stew for a while.  Sometimes weeks.  Then I write it in one go, editing ruthlessly along the way.  This blog is not a day-to-day journal – more a collection of essays.

So perhaps a little snapshot of our ‘real lives’ is in order.  [Photo above: Owen and Jamie embarking on an archeological dig] From now on, I will occasionally post about family life.  Interestingly, while ‘Owen and his disabilities’ occupies a substantial proportion of my strategic and long-term thinking, Owen himself is rarely the central focus of my day.  In fact, I’ve set things up specifically so that he’s not.

And on that note, I’ll get started with some random details:

Overall, Owen has been happy and engaged.  Ready to face the day and always eager to connect with people.  Manageability continues to be a challenge, but that’s not really his problem.   I am very happy with our current caregiver situation, including the addition of Mark, a capable young family man whose other job is tattooing.  Brings a welcome new energy to Owen’s life and to my household.

Angus is undergoing what Steiner calls the ’9 year change’.  It’s a lonely and sometimes frightening time for children and I can see signs of it in him.  There’s an underlying melancholy at times, but mostly I see an interesting and interested boy.  Still into Lego.  Guitar lessons and trampoline classes are extra activities.  Video games and random television are not allowed, but he watches movies on weekends.  Ongoing request for Lord of the Rings.  The answer is still no.

Owen has a caregiver with him 8-10 hours a day (except weekends).  This provides me with enough time to earn a living, spend time with Angus and tend to the household.  I sometimes nap if Owen’s had a rough night.  The boys spend alternating weekends (and a weekly overnight) at their dad’s, giving me time to catch up on sleep and work.  Sometimes I even have time to paint, take pictures and see friends.

I have been with my partner C for about 2.5 years.  We don’t live together but we live in the same house – my household is on one floor and his is on another, interconnected by a stairwell through the kitchen.   Unconventional, but works great for us.

My family:  3 brothers (Toronto, California, London England), Mom (Cambridge ON) and Dad and his wife (Stratford ON).

That’s all for now.

Oh!  I got a new digital SLR camera for Christmas!

As Owen gets bigger and more wiggly I can sense the forthcoming horrific decisions that are coming my way.  He is not that heavy yet (48 lbs) nor is he that tall (drat, I forget…  he’s short) but consider his size when he’s doing his best imitation of a greased seal and you’ll perhaps appreciate how difficult it can be to manage him.

Owen has virtually no control of his movements due to the unhappy combination of dystonia and spasticity.  Often, he extends through his whole body so powerfully he gets deep marks in his thighs and shoulders from his wheelchair’s lapbelt and chest straps.  When he can’t sit comfortably (which is a lot of the time), he must be released from his binds and laid on the floor.  Because of the lack of support there he writhes, twists and contorts himself into impossible pretzel shapes and must be rescued from himself.  The pressure in his stomach is so strong he pushes up his food and chokes/sputters every time he lies down.  And so then, the only option left is to be held in someone’s lap/arms, supported in a way that provides nothing less than a full-body restraint, using chin, hands, feet, thighs, knees to restrict the movement of a wayward flailing arm, flopping head and extended and rotated leg.  He thrusts, twists, flops and lunges in quick succession, sometimes, incomprehensibly, all at the same time.  I’m exhausted just thinking about it, even as I hear him snoring now in his bed.

While Owen’s condition is not degenerative, it is certainly progressive – meaning, he’s getting harder to manage.  I see that we can’t keep this up.  Not me, his dad, his caregivers, probably not even Owen.  Not like this.

We met with Owen’s neurologist earlier this week, to review meds and talk about next steps.  Again, the only tools in her toolbox are increasing meds and considering DBS – deep brain stimulation.  Increasing meds was an easy sell in the moment, but for a number of reasons it’s no long-term solution.  And so, what of DBS?

To date my reactions to the procedure have been, well, reactive.  Icky scar on the head, invasive battery implanted under the collar bone, scary probe in the brain…  Sounds all science-fictionlike and creepy.  But when I take a step back, I can ask What about heart pacemakers?  Artificial limbs?  What about cochlear implants?  These were all met with skepticism (by some) but are fully embraced today.  This DBS technology will be standard in 10 years. Maybe 5.  Perhaps I will feel foolish for being so resistant now.  Owen would not be alive today were it not for technology.  And anyway is DBS any more invasive than all those medications we give him several times a day, which by the way do little for his symptoms but in some cases create other problems?

I have decided to face my demons and learn more.  It’s only information (I tell myself).   No good decisions were ever based on fear and ignorance.  I am going to get the referral, meet the neurosurgeon and ask the important questions.

Someone has to do it.

I have spent the past 11 years fending off misconceptions that I must hate my life and that I must be angry or depressed about my son.  Often those misconceptions come from people without direct experience with disability – sometimes I explain, but mostly I just continue to live my life as authentically as possible, sharing what I feel and don’t feel along the way.

People don’t make this assumption about me out of nowhere;  online and in real life, I witness varying degrees of anger, outrage, sadness and helplessness expressed by caregivers of children like Owen.  And honestly there’s little here I can relate to.  (Except maybe the sadness.  Yes.  I can relate to the sadness…)

Here’s the objective truth: I have a son with multiple severe disabilities.  The obvious ones are physical and are SO very obvious that they mask any cognitive ability he may or not have.   Because there is no way to get specific responses out, I have no idea how much he ‘knows’.  He is of course even more limited by his environment – his interactions are primarily with caregivers and because he is deaf, his only opportunity to engage with language is when someone signs directly to him.  (Hearing children grow up surrounded by spoken language and develop language recognition long before they actually speak.  This exposure is critical to development, and Owen has not had that as he has not grown up around signing people.)   Regardless of his ‘potential’, he can’t do anything and his cognitive abilities are not knowable.  I will say that again:  He Really Can’t Do Anything And I Have No Way To Tell What He Understands.

Now here’s my subjective truth:  I accept these circumstances are real.  And I accept (after a few hard-scrambling years of various interventions) that right now, especially as a single mom with my own business and another child to support, there’s nothing I can do about it.  And I feel peace in relinquishing the fight against something I know I will never conquer.

I have said ‘I accept’ and sometimes it’s heard as ‘I accept my son for who he is and I wouldn’t have it any other way!’.  Would I have it another way?  Sure I would.  I would live in a world where I get a full night’s sleep and I am not on constant alert, waiting to see if my son is going to die today.  But that’s where my wishing ends because anything else  is even more futile.  I don’t wish my son could talk or walk or eat or hear.   I don’t try to wish away his disabilities.  Wishing is a waste of time.  Like guilt.

Let me be clear: I don’t relish or savour Owen’s disabilities any more than I relish or savour Angus’ stubbornness or occasionally tyrannical demands.  Life sure would be easier without any of it.  But I can’t separate out Owen’s disabilities from who he is fundamentally.  His disabilities completely mask anything below.  So I take him at face value and love and accept it all.

I hear other parents’ bargains, offering up organs or limbs or eyes or their very lives if their child could do this or be relieved of that.  It’s noble and righteous I suppose, but where would it get me?  I choose to not engage in those conversations, with myself or others, because it takes me out of reality.  It’s like a child’s negotiation with god – and it leaves me feeling empty and heartbroken and desperate.  There’s nothing more depressing than wishing things were different.

I also believe this in terms of  pain and suffering, and death and dying.

My child experiences pain and suffering, some days more than others.  I am doing everything I can to relieve it – it’s a very human and proper impulse and one I feel deeply…   but still, he has pain and he suffers.   So what am I supposed to do with that?   Engage in more bargains?  Take on his pain as my own?  Know that it’s never going to be enough but still struggle on, searching and experimenting?  The rest of  my journey is letting go of this self-imposed judgment and expectation (and resisting our society’s seductive opinion) that in order to be a good mother to my son I must take up the good fight and never ever stop.

Even the pain and suffering – I don’t waste any time wishing they were gone.  I strive instead to support Owen through this life the best way I know how.  I do what I can, which is a lot, and work to let go of the rest.  By ‘let go’, I mean stop the searching for solutions that simply aren’t there and trust that what my child needs most is a calm, non-reactive presence.

This, finally, is a goal I can meet.

(photo:  Owen and Grace)

(I got it!  It came to me this morning.  And it’s so very unCanadian.)

I am not going to help you through your discomfort and make it all better.  I can’t.  And I don’t want to.  ‘This’ is not just happening to me – you are here too, seeing, reacting, feeling.  Something is happening to you as well.  Do you feel moved?  Do you want to cry?  Are you feeling drawn towards us?  Or away?  Engage with me about that instead of  burdening me with your awkwardness and good intentions.

I will never be rude or impolite and I may even play along a bit (a teaching moment!)- but when this oft-repeated fully-scripted conversation is finished neither of us will be better for it.

(thank you SKJ)

Sometimes I cheer people up.   Not because I try to, but because sometimes people will compare their own stresses to what they assume are mine and will be drawn to ‘count their blessings’.  I suppose I should live and let live, but I am drawn to comment…

(I find this type of post hard to write, so I will adopt the literary device of speaking to you, the reader, as though you are the one who was stressed out and – after being inspired and counting your blessings – is now feeling better.)

It’s All Relative

My experiences with my child are extraordinary.  Uncommon.  And have evolved to this point over many many years.  No one handed to me a diapered, tube-fed 11-year-old boy who – despite what well-meaning people want to think – is not improving or getting better.

Rather, I had a complicated pregnancy.  Which required surgery in utero. And then I had a sick baby.   Who turned out to be deaf.  Who then turned out to have multiple significant disabilities, revealed excruciatingly slowly over a long decade – revealed not by things happening, but by things NOT happening.   The only actual shock was the first one – the moment I understood the routine ultrasound was abnormal.  My capacity to absorb information and alter course has increased a million times over since that first shocker, and yours would have too.

Your own experience is your own experience.  You might find it distressing that your child is not doing well in school, or that your baby is colicky, or that your child says she hates you.  And I can fully understand why you might feel like I’m the last person you would want to complain to about it.   (And honestly, I’m too tired to really give you support anyway.)  But you should not dismiss your completely normal stress response because you think I’m worse off.

It’s Disconnecting

People often tell me I’m inspiring.  When it’s other parents in similar circumstances, I can appreciate the sentiment.  And there are occasionally other situations when it feels appropriate and authentic.  But when you said it just now, it made me wince.  Because it was followed by ‘when I face (insert difficulty here), I think of all you have to endure and I count my blessings’.  (Those darned blessings again!)  So what does that mean exactly?  What are you trying to say?  And how do you suppose I might feel, hearing that?  Should I feel good?  Would you?

This might feel unfair, I know, but I’ll say this anyway:  It’s a little like showing up in a soup kitchen, ladling out a meagre portion to a starved, beaten-down man and saying “You’re so inspiring!  Look at what you have to deal with!  I am grateful I’m not like you!”  (Did I just call myself a starved, beaten-down man?)

I suppose what I’m saying is that, even if you’re feeling and thinking it, it’s really not necessary to share it with me.  In this case, the spoken admiration is just your swallowed fear.  If you’re thinking it makes me feel good – it doesn’t.

It’s Not Actually True.  Maybe.  If You Asked You Would Know For Sure.

Please don’t get me wrong – I know that you care for my family and me and are doing your best to express it.  But your statement reveals that you think I have a really hard life – and that always invites pity.  What you fail to realize is that again, it’s all relative.  You, stepping into my life, would certainly take some time to adjust and for sure it would feel like a very hard life.   But that is not the case.  I’m not you and I never was.  I don’t think I have ever thought I have a hard life – but I do have deep joy and sorrow and fulfillment and grief that make for a very full life and I would tell you all about it – if you simply asked.

Maybe you do want to know, but instead you say ‘I just can’t imagine! It must be so hard.”  (followed by “You’re so inspiring!”)

There is no room in this exchange for me to tell you that most times I don’t actually wish my son was different, only that the world was more accommodating.  That my hopes for my son used to revolve around achievements like walking and talking but over time devolved to improved sitting and swallowing and now are simply about not choking or aspirating.  And that actually, the lowered bar brings so much more peace than all that pursuit of progress. There is no opportunity in this conversation to say that I live every day wondering if he is going to live until tomorrow and that if he doesn’t, the depth of my sadness will only be matched by the enormity of my relief.   You haven’t asked me what I’m going to do when he’s adult because maybe you don’t want to hear me say I don’t know, I really don’t know and maybe he won’t even live that long.

It’s not hard to say any of this because it’s all so very true and I live it every day.  Hard would be denying it.

Maybe We’re Not That Different

“Look for the similarities.”  I had a therapist say that to me once.  Many times actually.  Look for the similarities, not the differences.  That’s where you’ll find the healing.  I tend to agree.

The world is full of disappointment, excitement, pain, passion, beauty.  I feel all of it, and I’m quite sure you do too.   Let’s talk about that instead.

It wasn’t actually a fraught decision;  I have always known my own limits for what interventions for Owen are acceptable and what are not.  The standard form for DNR (in Ontario, anyway) includes a list of actions that paramedics are legally excused from performing, including administering certain medications, chest compressions and artificial ventilation.

After thinking about it for a long while, I settled on an acceptable (customized) list and had Owen’s physician sign it.  She, and Owen’s dad, agreed with my decisions.

I then showed the form to all of our caregivers (actually, one more left…) and anyone else who figures into our everyday lives.  I made clear my intentions, my decision and my rationale and was open to discussing any reactions.  Everyone said they are supportive and some seemed relieved that a plan had been communicated.

This post is not about the details of the DNR or even whether or not I think you should sign one.  It’s a deeply personal matter and one about which I have no judgement.  Rather, I encourage you to think about how you would want an emergency handled.  Decide what you must and then inform anyone who needs to know.

For me, the details of the DNR were decided strictly on the basis of Owen’s likelihood to survive the intervention and what his life might look like afterwards.  However, the decision to contemplate it at all and finally get it in place was motivated (in part) by a completely different set of factors.

I currently employ 5 caregivers who collectively work approx. 50 hours a week.  The chances of an emergency happening during that time are not negligible.  I feel it is my responsibility to share with them the ‘master plan’, to not only help them to know what to do, but also to relieve them of the terrible burden of powerlessness and potential regret.

I am quite certain they feel the fragility of Owen’s life and it possibly crosses their minds more than occasionally that one day Owen may not be around to care for.   If any one of them are so unlucky as to face a potentially fatal emergency with Owen, I would want them to remain present enough to support Owen and not have to fret about decisions and interventions.  Because I have made decisions in advance, I can give my full trust and support to these fine young women.  For the amount of responsibility they shoulder every time they arrive for work, it’s the least I can offer them in return.