YES or NO | big decisions

September 17th, 2009 | 5 Comments »

I attended a fabulous un-conference*  yesterday about healthcare.

I knew in advance I would want to lead a session (anyone can if they like) and I mulled over 4 topics:

1. finding ways to extract and package parent knowledge to better inform healthcare practices
2. finding ways, through opt-in social networking strategies, to connect people with similar diagnoses (or other health-related commonalities)
3. finding ways to make healthcare data and patterns available to patients and their families, for the purposes of personal long-term planning, risk management and decision support
4. finding ways to build compassion and transparency into institutional communication, workflow and process

I went with number 3.  The session was well-attended with lots of great conversation and ideas.

This was my favourite:

Imagine this: a website, for parents like me, to map empirical research data against ACTUAL PATIENT EXPERIENCE.  A chart that shows long-range, longitudinal effects of medical, surgical and therapeutic decisions.  Including a Quality of Life measure that indicates patient/family satisfaction.  For example, cochlear implant surgeries are highly successful from a medical/surgical perspective.  But how happy are the children?  The parents?  What about children with multiple disabilities?  Do these numbers paint a different picture and how would those results influence other families’ future decisions?

So great to brainstorm with smart, engaged, interesting people.

I’m thinking about starting a CareCamp – an un-conference for caregivers to share ideas and stimulate change.  Anyone could come with the intention of supporting those who support our most vulnerable population.

Would you come?  Can you help?

* Do you know about un-conferences?  The camp model of un-conferences came out of the tech industry and has oozed to other sectors.  Basically, anyone can come and sign-up with the understanding that you are interested in the topic and are prepared to engage about it.  There is no agenda;  instead, after the groundrules are established, the attendees decide what they want to talk about.  Anyone can post a topic on the Grid (there was a big, taped grid on the wall, with rooms labelled across the top and timeslots down the side).  Once all topics are posted, attendees can decide where they want to go for the next session.  Popular topics have more people, less popular topics have fewer.  People can come and go.  Sessions expand and collapse.  At the end of the day, everyone gathers to determine actionable items and who needs help with what.

Healthcamp Toronto was sold out with 75 people, and attended by doctors, patients, Ministry employees, software developers, patient advocates, hospital administrators…  thought leaders in healthcare from many areas.   Cost?  $25.  It’s organic, open source and fabulous.  The only real rule is that someone has to take notes and post them to the website/wiki.  Here are our collective notes:  http://healthcamp.ca )

Filed under: carecamp, ideas, musings

September 15th, 2009 | No Comments »

(Wild Water Kingdom.  Last few days of summer holiday.)

I was told a few weeks ago that Owen’s hip was completely dislocated, as evidenced by an x-ray.  (He’s been getting x-rays every 9-12 months for the past few years, to keep an eye on his pelvis and legs.)   One leg  has become progressively shorter than the other by about an inch, and on the same side, his hip protrudes to the side in an odd way.  I was not surprised to hear these results and was equally not surprised when we were referred to an orthopedic surgeon for a consult.

Well, imagine my surprise when just last week the surgeon said no, it is not dislocated.  It’s still about 40% ‘covered’ and we’ll just need to keep an eye on it.  See?  (gestures to x-ray hanging on lightbox) Look here.  And here.  Nothing to do about it now.  Next!  (He didn’t really say that last one.   Just illustrating how obviously NOT dislocated the surgeon thought Owen’s hip was.)

I said, hold up.  The report clearly stated it was dislocated.

He said I always look at the x-ray itself.  I never read those reports.  They’re almost always wrong.

Filed under: medical, musings

September 10th, 2009 | 1 Comment »

(Great Wolf Lodge – Owen, Angus, M and T)

When Owen was younger, my biggest wish for him was to have friends.    I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers and spoke positively to other children about how Owen was really just like them underneath.  I bought into this notion that if only other kids could see the ‘real’ Owen they would want to be his friend and spent time with him.  They would learn how to sign and use his communication method of the current day (“pick a method, any method…”) – oh, and even use his switch to play turn-taking games!

There is value in these endeavours and in hindsight all were worthwhile, for a whole slew of reasons.

But what about friendship?

I ask myself now, even if this idyllic scene came to fruition, how is this even close?  Sure, Owen has clear facial expressions to indicate his overall likes and dislikes, but nowhere near the nuance of language and/or communication required to establish an independent relationship with someone.  I guess we can define ‘friendship’ any which way, but even the most simple definition of friendship must include the requirements of being reciprocal and voluntary.

Based on this, I can say now with confidence that Owen does not have a single friend.  He does not choose who he spends time with, he does not remember birthdays and he does not lend a helping hand in times of crisis.  And there is not a single person who comes by the house to see Owen who isn’t family or a paid caregiver or from a social services agency.

Here’s what makes this all ok:

Owen experiences moments of connection throughout his day that seem to make him glow from head to toe.    When his brother holds his hands walking down the street.  When Sallyanne or any of his other caregivers arrive for the day and he nearly jumps out of his seat with joy.  When Angus’ friend, D, makes faces at Owen to get a laugh, and announces ‘Owen’s cool!’.

I love and appreciate these moments for what they are – and I don’t pretend they’re something they’re not.  Calling anybody his friend does a disservice to Owen and these experiences because it’s simply not real.  It’s an attribution of qualities that only serves to demonstrate the ‘generosity of spirit’ of the person saying it.  Or, only serves to mask the discomfort of reality.

Filed under: social

August 20th, 2009 | 4 Comments »

(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.

Filed under: family, musings

August 15th, 2009 | 1 Comment »

(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.

Filed under: family, musings

August 4th, 2009 | No Comments »

(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.

Filed under: family, musings

July 15th, 2009 | No Comments »

(another random image: Owen in the rain)

Thank you to everyone who wrote to me after seeing my and Owen’s story on CTV.  Whether linking through the station’s website or by Googling my name, many of you took the time to seek me out and share your thoughts.  I think about what it must take to actually send someone a message after seeing them on television…  clearly, a strong motivation to connect!

I had the best of intentions when I decided to do the TV shows – to show that it’s ok to live without a diagnosis, and to suggest that there may be benefits to not knowing.  What came across was perhaps something else entirely.  I thought the late-evening news clip made our story sensational – Owen has a mystery illness that doctors are scrambling to figure out, and Jennifer is a worried parent trying to do everything to solve the puzzle (presumably so I can fix him). The Canada AM segment was better – no introduction by anchorman (who got a bunch of stuff wrong), and a chance for me to give my unedited comments.

Emails I’ve received this week fall into, more or less, 3 categories:

• “I know what is wrong with your son.”
• “I know which treatments will help your son.”
• “Your son reminds me of my child, who passed away.”

This last one was a very moving response I was not expecting at all.  I will write another post about that specifically.

The first two were, well, also not what I was expecting. I find myself wondering how I invited these responses.  I could partly credit the editing of the footage.  But maybe there’s something else.  It speaks to the nature of disability and our collective desire to help/fix/support.

Can I say something outrageous?  I believe that Owen is meant to be who he is – disabilities, vulnerabilities, discomfort and all.  That’s not to say that I won’t look for ways to improve his quality of life or try to ease pain and suffering.   It’s only right.  And humane.  But I also acknowledge that the motivation to help isn’t necessarily pure human instinct; it can be driven by my desire to be a good mother, to feel like I’m doing something useful from the pit of helplessness.  And my decisions can sometimes depend entirely on my own threshold for abiding Owen’s pain (real and perceived).   WHICH, I must add, isn’t a bad thing. My own perspective is all I have – I can guess what Owen wants, but that’s purely a guess.  Fiction.

So, I understand the desire to help and fix.  And I sense that the email responses I’ve received are from a genuine, heartfelt desire to connect.  So again, thank you. I haven’t responded to every email, but I did read each one and came away feeling that the world is a good place.

Filed under: media appearances

July 6th, 2009 | No Comments »

Click on the image above to see the full segment, including live interview.

July 16 – seems the links have moved – link to Canada AM (above) is correct. Link to CTV News segment is here.

Filed under: media appearances

July 5th, 2009 | No Comments »

I didn’t think an article would be written after all, but it was…  Click on the image to read the full article.  It mostly captures the telephone interview; only 1 or 2 quotes made me cringe :) I suppose they were accurately recorded, but the subtle ’spin’ doesn’t feel exactly right.  Oh well.  Good news is that the overall story is positive and well-portrayed.

Filed under: media appearances

July 4th, 2009 | No Comments »

• Sunday July 5, 11:00 pm – CTV News, Health report (taped segment, reported by Avis Favaro)
• Monday July 6, 8:00 am – Canada AM (live interview)

After being quoted in a recent edition of Bloom, a Bloorview publication for families, I was contacted by CTV.  They were interested in interviewing me on the topic of kids (with special needs) who don’t have diagnoses.  The story was supposed to appear in the online weekend edition of CTV News.

The interview went well – so well in fact, that the reporter forwarded the story idea to the medical producer for the broadcast edition of CTV News!  After another phone interview, CTV sent a crew to film an on-camera interview.   I was interviewed directly, and they also shot lots of footage of Owen and Sallyanne playing, Owen and I communicating and going for a walk, and Owen and I at Bloorview.  They also interviewed Golda Milo-Manson, Owen’s physician at Bloorview.  What a crazy adventure!  This story will air tomorrow night on CTV National News.

The footage must have turned out well; Avis Favaro, the Health Reporter for this story, passed along the script to Canada AM.  A few more phone calls later and I am now scheduled to appear on Canada AM on Monday morning!  There was also a suggestion that W-Five may be interested in following up with a longer story.

I will publish the links to the stories after they air.  Wish me luck!

Filed under: media appearances