(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.
I feel so bad…I hope you know my initial intent on writing you was never to make you feel bad or wave the possibility of death at you, only to say just cherish Owen for who he is.
I don’t think any mother can prepare for the loss of her child, I know even when there were red flags for me (and there were many over the course of 17 years…he shouldn’t have lived past 2, but he did…then 9, then 12….) I couldn’t let my heart go there or I couldn’t have kept moving on, and I don’t think that should be what our days are about. (but maybe it was that unspoken, unacknowledged possiblity that pushed me to keep pursuing every possiblity I could for Shane)… Rather, just do what you are doing…give Owen all the opportunities and experiences you can in the time that’s here, just exactly as you are.
Know also, that your writings are helping those of us with questions that still linger…”did I do all I could have for my child, did I make the right decisions on behalf of a child who can’t truly tell me what he needs/wants/feels/knows, did I read him correctly….are there things I should have done differently….” your writings confirm for us we are not alone with those questions. We are all just doing our best.
What continues to come back to me are that there are no handbooks for raising typical children, let alone children who live with the kinds of special needs that ours do. We are the pioneers…,previous generations of parents were never supported to keep thier own children at home when the challenges were this significant, and for those that did, the medical technology wasn’t even available to keep them with them for long. We can only follow our hearts and our maternal instincts trusting that they are leading us to do our best for these precious beings in our care. There are things I know that had he been in the hands of a ‘medical model’ (and institutional setting, or under medical care other than my own)…I know there are things that would have been done differently, choices that might have prolonged his time on earth (or not who can ever truly say)…but many of the things suggested raised other issues and concerns that as his mother I was not comfortable with, I was never convinced that those things were a benefit to his quality of life…and my heart told me quality trumped quantitiy, and I live with that, but I live content with the fact that through my choices there was a quality to his life he might not otherwise have experienced, he was happy, he was loved and he knew it, and he was part of a family that cherished him….just like Owen.
Looking back, as much as I miss him every minute of my days, I have no regrets…I followed my heart, and did what felt right for my child, and my pictures are testimony that in the end he lived a great life that he loved living, in spite of the many struggles…just like Owen’s pictures say of him.