I had brunch with Lisa the other day. We hadn’t met in person before but we’d shared not a few laughs and commiserations online. Lisa is a fellow ‘disability mom’ – shorthand I use around the house when Carsten asks, “Now who is this again?” “Oh you know. A disability mom.” Say no more.
I’m not sure how it started but we’re friends on facebook. We occasionally message back and forth or acknowledge each other with a quick comment or thumbs-up or haha. Her son is approximately the same age as Owen would have been. Their issues are quite different in many ways but of course she and I share an experience that allows us to connect quickly. With an obvious exception: her son is very much alive and the things she worries about are current.
The worries we would have shared seem long in the past for me now – 7 years this fall since Owen died – and I rarely give voice to the simultaneous relief and anxiety I feel bubbling up when I occasionally think what my life would be like now if he hadn’t. Hanging out with Lisa was a stark but comforting reminder – it really is as hard as I remember, and disability parents develop a special kind of resilience. They – we – can handle it.
The conversation turned to how she’s facing that horrific precipice every disability parent knows is coming: when your child ages out of high school at 21. We talked about options (variously: “not entirely sure” “still looking into it” “no idea what other people do” “maybe start my own thing” – indications of how much support there is for ‘transitions’), and at one point Lisa paused and said, “So, what do you think?” I don’t know what she meant exactly, but I’d been quiet for a while and she was probably simply curious, looking to see if I had any ideas.
I didn’t. Nothing helpful, anyway. Just thinking about it though made me remember something – a memory lodged so deeply in my gut it was kind of physical. I can only explain it this way: I would sometimes be going about my business with Owen – changing his diaper, feeding him, moving him from floor to chair and back again – and I would think, “JFC I will literally be doing this forever. No, actually. Forever. Like, literally. Forever. Seriously.” It would always be a stunning moment. Time would stop, if briefly. Despair was avoided only by staying busy, which was easy to do.
We all know that didn’t turn out to be the case, but I didn’t know it at the time. It was an unsolveable, intractable problem. No amount of support or planning would have changed that. The relentless emotional labour of having a child like Owen can be a prison of its own kind, regardless of what kind of help is available, or how much money you have.
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When I tell our story now I’m aware of my revisionist tendencies – the way I cherry-pick anecdotes to turn into poignant teaching moments. The way I present the wisdom of today as though I knew it back then. I give disclaimers in my talks but at some level it’s all kind of an unavoidable elaborate lie. Tales spun for entertainment, to soothe, to convince it wasn’t all for nothing. A way to take an experience so truly indescribable and turn it into words so others can catch the barest of glimpses into that strange and lonely world – one which, frankly, grows increasingly hazy in my mind. It’s doomed to fail as an exercise in accuracy. It’s maybe more an exercise of creativity, even fiction.
Anyway, with Lisa I said this: what got me through (inasmuch as you can say I got through something), was that I decided not to be imprisoned by my responsibility. Which meant more than just ‘taking breaks’ and allowing others to care for Owen – it meant accepting whatever consequences would come of that decision. Meaning, it likely wouldn’t always work out the best for him. He would have great moments, sad moments, painful moments, many of which I would know nothing about – and I was alright with that. I didn’t want his fate solely in my hands anymore, because otherwise I couldn’t breathe.
Owen’s death was devastating for me. It’s not at all what I wanted. But I’m okay that I wasn’t with him when he died, and I don’t fret about whether I could have prevented it. I had already relinquished a power I never really had in the first place (to save Owen from his own frailty), and was prepared to accept any outcome.
So while I didn’t have any helpful suggestions for Lisa, I could access that old terrible feeling and share what new insights I could muster – all while chowing down on a hearty breakfast, laughing about the bothersome waitress and thinking about the homemade butter tarts she had generously brought for me.
I don’t know about Lisa, but here’s what I got out of it: connection with a hilarious and kind disability mom (say no more), and, through the side door of revisionist story-telling, I got to hold Owen close and forgive myself all over again.
Lisa brought me butter tarts!
This is so beautiful and poignant and ultimately sad. I know Lisa very well and I love her heart and soul and compassion. She is an angel on earth to more than just her `boy`with a disability, she is a ray of hope for those in despair.
Thank you for this, Jennifer. I remember stumbling upon your blog five or six years ago, when Andrew was still going through the tumultuous early years of NICU/PICU/EMU hell. I hungrily read through each blog post; your perspective was refreshing and unlike what I was finding on other special needs blogs. I felt imprisoned by our circumstances but you pointed me in a direction to think about how to be “free” and not *as* weighed down by the heaviness of the weight we carry with us. And then I arrived at your post about Owen’s death (I was reading in reverse chronology), and I cried and grieved with you. Has it really been seven years??
Like you, I have also arrived at the “decision not to be imprisoned by my responsibility” to get me through this extraordinary journey.
I have no idea what the future holds for Andrew. And at this point, I don’t think about it *too* much. For now, it’s day by day; I will continue to be his mom, love him fiercely, and hope for the best – whatever that may be.
Hi Jennifer! I remember you well :) Thanks for stopping by again!
I just popped over to your blog and oh my goodness, those videos!! And your kids! If something I said planted a seed that influenced where you are now, I’m so pleased and humbled to have played a small part. You all look so wonderful. Having said that, I can certainly imagine what ‘behind-the-scenes’ must occasionally look like… would be hard to put that to music :D
Look forward to staying in touch.
Oh yeah, and thank you for sharing your wisdom and perspective with the world!
“…was that I decided not to be imprisoned by my responsibility. Which meant more than just ‘taking breaks’ and allowing others to care for Owen – it meant accepting whatever consequences would come of that decision. Meaning, it likely wouldn’t always work out the best for him. He would have great moments, sad moments, painful moments, many of which I would know nothing about – and I was alright with that. I didn’t want his fate solely in my hands anymore, because otherwise I couldn’t breathe.”
This post and the above arrived at the right time. My 21 year old son with autism moved into a group home last month and I’ve been struggling with this huge change in my world. I have felt for many, many years that I was the one holding it all together — keeping our heads just barely above water. Near the end, it was obvious it was falling apart (my son has big behavior/aggression issues) and I find it hard to believe I could hand over the responsibility. And why wouldn’t I think that? I was keeping him home some days from school due to his behavior and picking him up as he wouldn’t get on the bus. They called 911 multiple times and tried to get him admitted to a psych ward. I know that I am no longer able to be solely responsible for him anymore, but I feel guilty for it at the same time. I wonder too, Jennifer, if it’s harder to not be imprisoned by it if you believe you played some part in causing the disability. Thank you for this post — it is very helpful.
Genowefa,
Thank you for taking the time to read and post. I totally get the contradictory feelings. Seems like there’s no good option and never a good time. And yet, there’s only one reasonable course of action. I wish I had something wonderful to say. Perhaps I can offer you this, for whatever it’s worth: my ‘decision to not be imprisoned’ did not happen overnight, and did not happen without a considerable amount of pain. The guilt doesn’t really go away, but I’m used to it now, and have decided that it just comes with the territory. Anyway, I hope every day gets easier for you. xo
I met you today for the first time . You mentioned to us that the anniversary of Owens passing is two days away. I will keep you in my thoughts while I give thanks that you are with us sharing Owen and your reflections and your path forward – thanks you
Thank you Kari, much appreciated.
Hi Jennifer,
Love everything you write! Our son is 4 1/2 years, very much like Owen, and we are thisclose to ditching traditional school in favor of alternate life experiences, much like you discuss in your book. My question is this…do you ever find other parents are pretty indifferent to their child’s condition? Just, to us, it’s neither inspiring nor difficult. Not fully of trudgery but not full of life affirming experiences and emotional/spiritual evolution. In short, it’s all of that and none of that, much like parenting a typical child presents. At least for us. We find that viewpoint has alienated us in both groups to a certain extent, but it’s the truth. I’m wondering why.
We have some aspirations to give our son an Owen-inspired life, so we thank you for that!
We love watching your career grow and evolve. You are bringing such a valuable voice to the discussion, thank you! Take care.
Hi Allyssa!
Thanks for commenting, and for giving me a peek into your life. It sounds like you have a sane and balanced outlook on things, which is an achievement with any sort of 4 1/2 year old :) To answer your question – no, not at the time Owen was alive. I didn’t connect much with other ‘realist parents’ except for one or two exceptional people who had children much older than Owen. I too found it hard to connect with people – or perhaps people had a hard time connecting with me. I simply wasn’t interested in talking about the things people in our situation wanted to talk about… and like you, I found our lives just carried on with a different normal – Owen’s disabilities were just part of him, and we figured it out as we went.
I will say though, that the more people I’ve met over time, the more I’ve come to understand how finances, health insurance, relationships, family, employment, access to services, etc etc all play a part in how parents experience their child, and how equipped they feel to provide care. I was in a bit of a bubble – I didn’t have financial stress, I had a caring partner who was a good parent, I had a typically-developing 2nd child who balanced everything out, and too many other privileges to count. In hindsight I see that it wasn’t just my realistic attitude, but also the vast supports we had that allowed me to hold certain perspectives. Of course none of that helped the lack of sleep and all the to-ing-and fro-ing to appointments! But perhaps you get the gist :) I guess the short story is that I’m very grateful I was able to love and care for Owen the way I did.
Thank you again for coming by and commenting – I’d love to hear more about your journey as you sort things out. I get lots of comments and emails from readers wondering about how they might homeschool or construct something different. My own experiences were so long ago it would be great to point readers to another family’s journey that is more current. If you don’t have a blog I’d be happy to share your story here. Either way, would love to get an update from time to time :)
All the best,
Jennifer