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!

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.

I am watching my boys growing and I am stunned at how quickly their childhoods are giving way to eventual adulthood.  I get ahead of myself a bit perhaps – they’re only 9 and 11 – but they’re over half way to what we typically think of as ‘grown up’.  So I feel entitled to take a moment to contemplate what has come before now and marvel at how much has been packed into what feels like a short time.  And to look forward, and wonder what is to become of these 2 young boys.

Interesting.  As I started writing this I thought it would be about Owen and how he might remember his childhood, and how he might feel he got or didn’t get what he wanted or needed.  Instead, I feel drawn to thinking more about Angus, Owen’s younger (but so much older) brother.

Angus is Owen’s champion.  His advocate.  Often, his voice.  He is outraged at the little indignities Owen suffers on a daily basis (heard on an elevator:  “what a lucky girl to have such curly hair!”  Angus:  “He’s NOT a girl!”)  He is thrilled when Owen knocks over his tower of soft blocks.  He is deeply worried for Owen’s health and wellbeing and does not want to hear about his surgeries or sufferings.   Angus has not one ounce of self-consciousness or embarrassment about Owen and is fiercely loyal.   I sometimes wonder about Owen’s eventual death – Is it soon?  Will I be there?  Will anyone witness the moment?  Whatever morose thing I’m thinking,  I feel the hot surge of my own grief and I then immediately think ‘Angus!’.

After me and Owen’s father, Angus is next in line for taking up Owen’s torch.  Angus knows this although I have never said it.  He often talks about looking forward to getting his driver’s license so he can ‘drive Owen around’.  He wonders what it will be like for him and Owen to live on their own one day, together.  I say nothing, but my heart breaks wide open every time.

I realize now that so much of what I do concerning Owen – how I speak about him, how I engage with him, how I care for him, how I include him – is as much for Angus as it is for Owen.   And it’s for Angus that I must model a life that is balanced, good and, well, fun. I don’t ever want Angus to think that he must suffer or break his back in order to offer love and care to another – his own brother or anyone else.  And I am determined to not let Owen be anyone’s reason for having a bad life.

Regardless of whether Angus does eventually become Owen’s caregiver and/or guardian, I want him to look upon his brother lovingly and respectfully and with an open heart, without the cloud of guilt or fear or burden that so many of us create for ourselves.

And I want him to believe that anything he does for Owen, borne out of these energies, is good enough.

(photo:  Owen’s 11th birthday.  With Angus.)

Here’s the truth of the matter:  I don’t know anymore.

I don’t know what. I don’t know how. I don’t know if. I don’t know when. I don’t know why.

But I used to.  What changed?

My guess is that until now, I thought my challenges were kind of hard but not gruelling.  I was being given what I could handle and I was handling it all well.    The supposed uncertainties of Owen’s young life were never actually really all that uncertain.  When Owen was a two-, four-, six-year-old, I knew what his limitations were, what his health status was, what his basic trajectory was going to be:  he simply wasn’t going to change much.  Just get older.  And bigger.  Older and bigger were things I could anticipate and prepare for.  Of course he had medical and health challenges, but they were par for the course.  He spent the first 3 months of his life on a ventilator in intensive care.  Pneumonia?  Surgery?  Child’s play.

Sure, I would often say and do hopeful things that suggested maybe there was potential for more function, independence or communication – but I knew what everyone else knew.  That whatever incremental improvements he might experience, his ongoing care and requirements were as predictable as rain.  There was stress, yes, but no fear.  And I definitely didn’t ever think that Owen wouldn’t survive at least into young adulthood.

I often talk about the gifts Owen has brought to my family and me – he keeps us in the moment, gives us perspective, helps us prioritize – and we’re now all better off.   I still think it’s true, mind you.  But I say it like he arrived one day with a fanfare, handed out his presents and then life returned to normal.  Like he’s an event that happened once, and now that we are used to this way of life, everything is fine.  I have spent many years feeling  especially wise because I’ve lived through something traumatic and emerged out the other side.

Well.

All of this melts away in the face of death and dying.  Not that I think Owen’s death is necessarily imminent – but I feel that upcoming decisions resemble those made in palliative situations.  I see no ‘improvements’ forthcoming – I  see only pain management, quality of life, reduction of self-injury, and setting up environments and situations that invite loving people to care for him.

Owen did not happen once.  He continues to happen. And change.  Like with all of life, the security and shelter of childhood is giving way to the reality of impermanence.  I feel that right now, the uncertaintly of Owen’s future is palpable.   I no longer assume that he will be here in a year, a month, even a day from now.   And the principles I have based decisions on in the past are irrelevant or just don’t make sense any more.

Maybe everything until now has been practice.  Here’s where the rubber hits the road, as they say, and if I can remain in the moment, keep perspective, prioritize – then I will certainly have evolved.  Passed the test.

Why is it I feel so unprepared?

Let me say more about what I don’t know. I don’t know how I, entrusted with this precious life that refuses to be anything resembling typical, am supposed to figure out what to do next.   There is no path that others have succesfully cleared that I can follow and know that I will arrive at the end and have no regrets.  And the sad irony is that, as I sit here furiously wondering what to do next…  there just aren’t any good options.

(photo:  summer fun at the cottage)

I have been thinking lately about my role as Owen’s primary caregiver and advocate and the process involved in making tough medical and care-related decisions.  I’d always thought it was quite simple:  do what I think is right given what I believe to be true at the time.  ‘Right’ means 2 things:  what do I think Owen would want, and what would I want if I were him.  Using this admittedly rudimentary yardstick, decisions have included (but are not limited to):

• not getting a cochlear implant
• using hearing aids
• not using hearing aids
• not getting a g-tube for feeding
• getting a g-tube for feeding
• learning ASL
• learning Blissymbolics
• not learning Blissymbolics
• homeschooling
• not medicating Owen for sleeping
• medicating Owen for sleeping
• going to school
• not going to school
• not getting a baclofen pump
• getting a baclofen pump
• removing a baclofen pump
• and now recently – not getting deep brain stimulation

Each of these decisions was followed by loud pronouncements to family, friends, doctors, and then within months completely reversed with much quieter assertions  of opposite intention.  “I will NOT…”  or  ” I could NEVER…” or “I will ALWAYS…”  were replaced by “It wasn’t working so…”  or  “I just couldn’t bear the ______ (lack of sleep, discomfort, hassle – choose one)  anymore”.

So far, no regrets.   Decisions are made, things change, new decisions are made.  But life with Owen is getting much more muddled and complicated and on reflection I see that none of this is simple.  I’d like to move forward having learned something from our almost 11-year journey together.  Maybe I need to broaden my definition of ‘right’ (as in ‘do what’s right’).

As I have mentioned in previous posts, Owen is deeply uncomfortable a lot of the time.  However, his pain threshold and tolerance for the discomfort is increasing.  In other words, he’s used to it.  BUT, and it’s a big but, his pain isn’t the only issue at stake.  At stake are his health, his manageability/quality of care, my health and wellbeing and Angus’ eventual involvement in Owen’s care.  Consider this:

• Owen’s dystonia and spasticity are wrenching his body out of alignment.  His hip is dislocated from the twisting and writhing and I think his opposite shoulder is next.   When sleeping, his body is totally twisted in what some of us in the yoga world call ‘little boat twist’ -  head turned to one side, knees bent  (and drawn in) and dropped to the other side.
• Owen is getting hard for me to manage. He’s not huge – only about 45 pounds – but imagine carrying (safely) a 45 pound wiggly, slippery fish.  Or strapping that fish into a wheelchair in a seated position (oh, and don’t forget to attach/fasten the lapbelt, chest harness, neck support, pummel… quick!).
• Owen is even harder for others to manage.  He didn’t show up on my doorstep as a fully formed 10-year-old Owen.  He and I have travelled this road together.  His new caregivers though are a whole different story.  I am acutely aware that for the young women I’ve hired, Owen is a huge challenge.  Physically, mentally, emotionally.
• I don’t really sleep.  Owen’s bed is beside mine and I often need to adjust him or change him in the night.  He might sleep deeply from around 11 pm to 3 am.   At a time when most of us can just yawn and turn over, Owen somehow wiggles himself into a pretzel shape and can’t get out.  He’s also extremely tight and needs to be untangled.  By then he’s entered a different phase of sleep and is less calm.  He jerks, spasms, thrusts, postures – the only way back to sleep is to be held in a kind of fetal position (by me).  I sleep on one side and basically hold him down while he twitches and flinches for the next 3 hours or so.  We muddle through most nights, he and I, and get about 5 or 6 hours of sleep total – but for me it’s not restful or deep. The toll on me is undeniable.
• Owen’s brother, Angus, already feels responsibility for Owen.   He recently announced that he will want to live on his own for a bit “in his 20′s” but then in his 30′s he will live with Owen and take care of him.  Angus is 8.

Really, this list could go on and on.  My point is that in addition to Owen’s comfort, I need to consider the long-term ramifications of my decisions and Owen’s ongoing care.  I want him to be loved and cared for for the rest of his life – in order to make this happen, medical decisions must account for this.

My responsibility as his mother, advocate and substitute decision-maker requires that I consider so much more than what Owen would want.  Partly because there are so many other issues to consider (some of which are listed above) and also because I just have NO IDEA what Owen would want.

I’m going somewhere with this – check the next post.  This one is getting too long, even for me.

(Another random photo of the boys – eastern Beaches in Toronto.)

As I mentioned in my last post, I’ve received a few messages from readers sharing their stories about their own children (presumably all with disabilities) who have died – some recently, some long ago.  I was moved and honoured to receive these stories, and I have to admit also appalled.

I did the TV shows to send a message of acceptance and peace.  To showcase a family moving forward in the face of so much uncertainty.  I was an EXAMPLE!

I was so not expecting the responses I received and they gave me such an emotional jolt that I can’t help but wonder if this not-so-gentle reminder of Owen’s humanity isn’t some kind of preparation.  And so well, of course it is – every conversation or thought about death will better prepare me for Owen’s eventual death – but I mean is it perhaps an intentional preparation?  A divine intervention to get me in the right frame of mind?

I’ll explain.  This thought is not out of nowhere.

I see two simultaneous trajectories:

• Owen is on an upswing.  He’s good-humoured, engaged, delighting in life.  He’s having lovely experiences – Spiral Garden camp at Bloorview, Great Wolf Lodge, long walks, frequent naps, mild weather.   A bevy of new caregivers has started working this summer and each of them brings to our family a spirit of joy, humility and love.  In short, Owen’s having a really good summer.  Oh, and his 11th birthday is August 18!
• Owen is on a downswing.  His dystonia is so strong he has dislocated his right hip.  I think he’s in quite a bit of discomfort (although his pain threshold seems to be increasing.)  His spasticity is getting stronger.  His sleep is generally worsening.  His respiratory health is weakening (another pneumonia took him down a few weeks ago).  He’s often either extremely dopey or over-the-top tight and can’t sit in his chair for more than 20 minutes at a time.  Or lie down because he throws up his stomach contents.  There’s no remedy or end in sight. His body seems to be slowly shutting down.  (I should say here that this isn’t a permanent state.  Sometimes his body looks just fine – I mean that overall, there’s a troubling pattern of decline that we can’t stop or rein in.)

Here’s how I have started to reconcile things:  Owen’s having the moments and experiences I was so praying he could hang on long enough to have as he was lying in his hospital bed last spring, alternately fighting for and fleeing from life.  Whether I had any say in the matter is debatable, but I knew that I was not ready to let him go after such a long winter indoors.  I thought please please please let him live a bit longer so I (and others) can get him out in the fresh air, put his toes in the grass and float with him down the Lazy River at Great Wolf Lodge.  (Ok, that last one wasn’t so clearly visualized at the time.)  And I was very aware that I was making this wish because I knew that if he died then I would have to live with the unbearable anguish of feeling I had not done enough to give him a quality life.

So it was during that hospitalization I promised to Owen that he would never again be sent to school to endure the monotony of an institution that has no idea what to do with him.  I also promised that I would surround him with as much love and joy as possible.   And I committed to removing the pump he seemed to be rebelling against.

And now, all of this has been accomplished.  And Owen is happy! And more physically compromised than ever.

So back to the letters.  I wept for each of those mothers who wrote to me not because I felt sorry for them (I did feel sorry for them, but that’s not why I cried).  I wept because I wondered if maybe I was next.

And when I think about it, it doesn’t not make sense.

not all of you know owen had surgery yesterday for removal of the intrathecal baclofen pump; in case news traveled (and also of course to update you), the surgery went well and owen is doing fine.  it was good timing to remove it – there was a large amount of spinal fluid accumulating around the pump and through the abdomen (from where exactly no one is sure yet) and so he may have needed surgery anyway.

the pump was removed because of owen’s health complications in the spring – origins are still unknown but most likely culprit was the pump itself.  we found out some weeks afterwards that owen’s pump’s serial number was one of a batch recalled by medtronic for potential problems in medication regulation.  we’ll find out in a few weeks of his pump was indeed faulty.  and no, we are not getting another one!

we’ve embarked on a series of medical tests that may shed some light on things, or at least rule things out.  tests include skin and muscle biopsy, MRI, lumbar puncture, host of blood tests.  they’re looking for indicators for rare metabolic diseases and muscle disorders.  some genetic, some not.  some degenerative, some not.  owen is an unusual child on many fronts – we’ve always known that! – but recent changes in his function and comfort have prompted me to finally say ok to these invasive tests, if for nothing else than a benchmark.

anyway, likely owen will stay at sick kids in toronto for another day or two, then home to convalesce.  i’ll update when there’s something new to report.

much love,
jen

A happy post for a change: Owen was at summer camp for the past two weeks at a joyful little place called Adventure Valley. AV is not specifically a camp for children with disabilities; it’s a private, non-religious day program in Thornhill, at Leslie and Steeles (here in Toronto), run by a lovely woman named Lynda Fishman.

Lynda is a friend of a friend who believes in the benefits (for all children) of integrating typically-developing children with children with disabilities. (Note to self: why is this still unusual?) She also holds dear the notion of families doing activities together – in this case, siblings attending summer camp together. So, after introductions, and despite the fact that the camp was full for July, she invited Owen and Angus to attend.

I was deeply impressed for a number of reasons. To start, Owen himself is a lot to get one’s head around. He has complex medical needs, requires significant physical accommodation and extensive alternative programming. Lynda knew all this going in, and without asking how or what or why, she just said “come. we’ll figure it out”.

The camp is also expensive. It’s a beautiful private facility on manicured grounds with 2 swimming pools and regulation tennis courts. Full meals provided daily, extensive programming, 3-to-1 staff/camper ratio. 4 x more costly than the local community center camp, and I can see why. (Sending 2 children to camp for 2 weeks (including transportation) costs about $2000.) So here’s the other reason why I was impressed: Lynda asked for funding on HER end – I didn’t have to do it! AV is connected with an organization called Chai Lifeline, which provides programming funding to organizations who seek to include children with illnesses and disabilities and their siblings. Chai Lifeline generously funded Owen’s full camp fee.

There’s much to say about Owen’s experiences at camp, which I will cover in another post. This post is more about Adventure Valley itself. I’ll detail a few things though, so that readers are not making assumptions about what AV does and doesn’t do:

• There were maybe 3 or 4 other children at the camp with 1-to-1 facilitators. None had extensive physical disabilities. I believe there were a couple of other children with learning and/or cognitive disabilities who did not require 1-to-1 support, but who were followed closely by AV’s 2 Integration Coordinators.
• I sent Owen with his new facilitator, Sallyanne. I, not AV, paid her. She was responsible for all of his physical care, his integration into activities and his overall wellbeing. Staff at AV was very helpful when called upon, but Sallyanne did the bulk of the work.
• Owen was placed in his age-appropriate group and participated in the activities that made sense for him. Not all activities could be adapted to include him, although efforts were always made.
• AV is not completely wheelchair-accessible – there is a 2nd floor activity room where many gatherings occur. Often Sallyanne would corral a strapping lad (staff) to help her carry Owen and his chair up the stairs; other times they would opt out of the activity. And yet other times, if the activity didn’t have to happen upstairs, the group would relocate downstairs.
• Sallyanne is a CODA (Child of a Deaf Adult – 2 Deaf parents, in fact). Her ASL is improving, but primarily she signs SEE (Signed Exact English). She is hard-of-hearing and completely functional in an oral/hearing setting. Because of all of this, she was able to interact/communicate with everyone at the camp, and still provide Owen with a quality interpreted, facilitated experience. Some staff knew a few signs, but not enough to communicate well.
• There was not a gender-neutral change room, so ad hoc arrangements had to be made for diapering, changing, rest-times etc.

So all of this to say that AV facilities and programming were not designed with Owen’s particular requirements in mind and several less-than-ideal-but-certainly-good-enough accommodations had to be made. Which of course is fair enough, and makes Lynda’s openness to including Owen all the more fantastic. I will undoubtedly send Owen again. Lynda and I have each identified opportunities for improvements and we will figure them out together for next time.

After Owen’s brutal spring with such a lengthy hospitalization, what a wonderful start to the summer.

Photos of Owen, Sallyanne and AV staff below. (I have photos of him with other campers, but I hesitate to post pictures of children without permission.)