part of a recent painting of mine - the dolphin is a woodcarving, a posthumous gift for Owen from our trip to the Dominican

I made a decision over the holidays:  no more promotion of my book (even though I hadn’t really even started yet!)  I decided: I will speak to groups when invited, but for now I will lay low and stop shopping around my box of books and PowerPoint presentation.  Seems like a step backwards, I know.  I wrote the darn thing so I should be out there selling it.  But there’s something kind of awful about shilling my own story.  It’s draining and slightly embarrassing. I needed to regroup and figure out what felt right for me.

However, this new direction notwithstanding, I still had some January commitments to fulfill–specifically, a talk to some medical students and the book signing.  I’m glad these were booked previously.  Important events that each taught me something:

• Speaking to the medical students helped me realize that I really don’t like the ‘presentation’ format for this (my) subject matter.  Too much of a show-and-tell, tug-at-the-heartstrings, here-is-my-disabled-boy-now-deceased performance that feels icky.  Especially since this particular audience didn’t know my story ahead of time and hadn’t read the book.  They were receptive and friendly and attentive–this has nothing to do with their reactions–but I don’t think I want to do this exact kind of thing again.
• The book signing was fun!  I loved meeting people and feeling the buzz of the event.  I didn’t expect to enjoy it but it was a very special day.

So read into this what you will:  pretty much the same moment I decided to stop, opportunities started appearing.  I was asked by Holland Bloorview to kick-off a speaker series (Feb 15), then came a request to speak to the staff of a special-needs preschool (Feb 9), then after following up on an email trail with the CBC from back in the fall, I was invited as a guest on CBC Radio One’s Ontario Today (Jan 19), which then lead to booking 2 upcoming interviews on the equivalent lunchtime shows in Saskatchewan and Alberta (Feb 6, ‘Blue Sky‘ and ‘Alberta at Noon‘).

I’m learning to roll with it–maybe even enjoy it?– and see what unfolds. I am so happy that the book is sparking conversation and that Owen continues to live on in others’ imaginations.   There is clearly an appetite for more conversation, and I am humbled and honoured to be part of it.

Photos courtesy of Diana Renelli Photography.

I was worried that I wouldn’t have enough interesting things to say, or that I would be misinterpreted, or that a caller would challenge me on something I said and I would stumble on a response.  If you tuned in, you would know that none of that happened.  A positive experience all round and I would do it again in a heartbeat.  You can download the podcast here.

I cringed only once.  It was when the host, as a lead-in, characterized my message in a way I was uncomfortable with–reducing my message to ‘everything is fake and hope is snake oil’.  I had a chance to explain myself, to say “Well, not quite…” and explain that I thought the healthcare system required us to engage in fake work and cheerful pretend and wishful thinking.   But I felt defensive.  I thought, “Oh no!  Parents are going to think I’m saying that what they’re doing is useless!”

But in the end, it was the callers, parents and therapists alike, who called to say that they also felt that there was too much work, too much pretend, too much hope that leads us down garden paths going nowhere.  I think we could have taken calls all afternoon and chatted away for many more hours–there was no shortage of stories.

I was nervous before the show and made some notes, included below.  These were the things that I absolutely wanted to say before the call ended.  I think I got most of them in.  And I think I now have my next few blog posts planned out . . . !

• I am sharing my story for others to take from it what they will.
• I don’t have specific advice about actions. My own learning was about self-discovery, creating intention, uncovering motivations – asking the hard questions of what really matters. The outcomes will be different for every family.
• There are many heart-warming and inspirational stories in the media, online, other memoirs. Overcoming odds, disabilities. Even miracles. No one I know experiences life this way. Ian Brown’s book “Boy in the Moon” is a good example of an alternate voice. I wanted to do the same – add another perspective.
• The system is a well-oiled machine with many moving parts. Parents with disabled children are, by comparison, naïve and inexperienced. It’s easy to adopt the prevailing perspectives. It’s important to maintain agency and intentional choice.
• Efforts to support a child are certainly an expression of love, but they are not a measure of love. Parents don’t have to prove anything. We all understand the depth of love a parent has for a child.
• No one else is better positioned to make decisions on behalf of your child. Take the responsibility seriously, make decisions with intention.
• Be flexible, agile, become a skeptic.
• My message is not about individual therapies or interventions or specific decisions – it’s about what perspective you bring and the way you regard your child. To honour their humanity, meet them where they are.
• Protect childhood.
• We are critical of parents who overschedule or over-parent their children. Why doesn’t this apply to disability as well? We are praised for overworking and it is assumed this is required.
• No wonder parents can be distraught when they learn their child is going to have a disability. Not surprising physicians might counsel a family to consider terminating a pregnancy – it is assumed to be a grueling life full of disappointments. I suggest it doesn’t have to be.
• Imagine being on the receiving end of this amount of effort and work. Imagine being a child with no real awareness that there is something wrong with you, and being taken to appointment after appointment, made to work, perform, take off your clothes, pushed through your tears, assessed, monitored, tracked—then experiencing the angst and tears and worry of your parents. I wonder how that must feel.

The article refers to my book, which is a great plug!  The website for the book (not quite yet finished) is here:  NoOrdinaryBoy.com

(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.