(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.

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.

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!