My grandmother died recently.  I met her once or twice when I was a young girl, but only knew her through photos and rare stories through my parents.  She was elderly when she died and while her death was certainly mourned by her children, grandchildren and great-grandchildren, I don’t believe anyone thought it a tragedy.  She was very old and it was clearly time.

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.



  1. This is beautiful and sad.
    I often wish that no one had to gain wisdom of this sort.

    • Truly you never wish anyone to gain this type of wisdom. Yet through sharing her wisdom, she brings us into a world few travel with honest and transparency.

      Jen did not know her grandmother, I am her Aunt. I do not know here either other than reading her blogs and an occasional email. Through her blogs I have come to know a bit about her amazing strength.

  2. I came here from severedisabilitykid (Claire’s recommendations are always bang-on!).

    This is thoughtfully written and expressive and clear – simple and all the more powerful for its simplicity and brevity.

    I concur, life’s meaning, any life, is about love, and experience, and definitely sensation!

    Cheers to you this Monday morning,

  3. Thank you Claire, Lisa, Elizabeth, Mary – and others who commented but only to themselves :) I appreciate the acknowledgment and connection…

  4. I tell myself some of these things all the time and i cherish the moments and time i have with my daughter, because a child with special needs is always here for a reason; and possibly to teach us to not take things for granted. Among all the other things our children teach us this is one of the most important to me. That was avery great read keep them coming parents sometimes know the bitter sweet truth but dont always know how to face them.

    • Hi Ken – Yes, so much beneath the surface that never gets said! Thanks for the encouragement.

  5. Jen, thank you for for sharing this. The words and images are beautifully paired. I do believe that at death it is love and connection that is all that matters. My Dad died a year ago and that was so clear to me. I was talking with another mom and she described something called reverse parenting — how all of her friend’s children were growing up and moving out into the world and independence, and in her case she was anticipating having her child, who would no longer be at school, back at home with her 24/7. I think a lot about that with Ben. I also went through similar stages of adjusting my dreams for him over time. Everything you said, and all the ambiguity, makes so much sense. I can only imagine the degree of physical care and mental vigilance needed to keep Owen safe round the clock.

    • Your comment just made me think of something: life’s challenges are often bearable because we know they will end. Or that something will give at some point. And so we soldier on, keeping our eye on that end-point.

      For me, Claire and others, we know there really is only one ending. And it’s so unspeakable to wish for it come faster! Or at least, look forward to it. But, there it is. It’s real and we should not be ashamed or feel guilty.

      Not sure this response speaks directly to your comment! Thanks for sharing Louise.


  6. I lost my brother in July, he was 26 years old, he was 3 months away from his 27th birthday, he was multiply disabled, cerebral palsy, hydrocephalus, Grade 4 bleed on and on. On July 13th I lost my best friend in the whole world. I know how your feeling, I understand you. I know my brother was a gift to our home and we received the blessings of unconditional love from him, my heart has been forever broken and I cry SO much during the day- I miss him SO much. It’s hard to go from (all of my Family) really loving and taking care of someone to have them pass on and try and figure out now what you do with yourself. Being used to the daily routine’s and now those routine’s are gone.
    Please know how Thankful I am for your post- I have had such a hard time with the loss of my brother, and I am a mother myself to 2 beautiful girls. It’s really hard to pick myself up each day.
    Thanks again

    • @Shalise Thank you for sharing your story. I often think about Owen’s younger brother, Angus, who has never known life without him. I wrote about it here: http://johannesen.ca/yesorno/2009/family/good-enough/ Perhaps you can relate.

      I am so sorry for your loss. However much we expect it, it doesn’t minimize the pain or grief. I often hear from parents who have lost a child, but rarely from siblings. Of course the loss is felt through the whole family, and beyond.

  7. This is so beautifully written. I am just weeping now because to an extent I totally relate and understand. My daughter’s disabilities are not AS severe as your Owens, particularly in the physical sense, but I worry about her young death (due to seizures or accident) daily. She does into status epileptus often, mostly at night, and Im quite aware of the fact that she could never wake up from one of these episodes should it occur at 2 am. Anyway, lesser extent, but my heart related to all of your words and I loved my first visit to your amazing blog and cant wait to return :)

    • Hi Alicia,

      Doesn’t matter what the level of disability is – the stress/fear/guilt (you name it!) are real. And so complex and difficult to process!

      I sometimes think that all I blog about are the really big weighty issues around disability – and then I think, well, yes – it’s ALL big and weighty! I’m glad I’m not alone.

      Thanks for writing…

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