On meeting my younger self

10daysI have been thinking a lot about my recent interview with Christine and have decided to write about it. Please read this brief post first.

In previous interviews, each of the subjects has had the luxury and benefit of time. Their ‘coming to terms’ happened long ago, and now each of them are able to discuss the evolution of their focus from medical issues to social issues to access issues and beyond. Their concerns now are more broad, and in many ways more simple.

The hustle required to meet the complex demands of early childhood seems to give way to a realization that they’re running a marathon, not a sprint. Older parents move a little more slowly, respond in a more measured way and have more context in which to assess their current situation.

Christine hasn’t had that distance yet and is still working hard to figure out her new life. Her daughters’ challenges are largely medical, although their hearing loss brings the question of language delay. And their extreme prematurity (born at 24 weeks, less than 2 pounds each) means she’ll need to watch for developmental delay. Combine this with everyday financial concerns, preexisting health issues, busy family life. . . I really felt for her.


Owen has been gone for 4 years and as I’ve said before I feel grateful that I was able to witness his complete life, from beginning to end. The part of our journey that resembled Christine’s felt very long at the time – 5 years or more of not only having to do all that shit but also a time in which I felt boxed in by a particular identity and way of being, which deep down I knew I didn’t want and certainly hadn’t signed up for. “Look at how hard this is,” I would say out loud, as I reeled off the number of appointments we had per week, how much weight he’d gained, whether he was bringing his hands to mid-line. “But I wouldn’t change a thing!”

Wouldn’t change a thing? I’m not sure I was convincing anybody but myself.

Now, that period of time seems so short. In fact I rarely think about it. I don’t connect to that time as being anything other than the time before I started to figure stuff out. (Even though of course I thought that what I was doing at the time was figuring stuff out.)

I feel compassion for my old myself, and for Owen, who had to look at my worried, exhausted but determinedly over-achieving face day after day – and who had to perform meaningless therapy-related tasks to my endless encouragement and clapping. I’m so very glad he stuck around long enough for me to emerge from this stage and work on transforming our lives into something else.


My visit with Christine triggered a flood of memories and feelings. In light of these reflections, I am reevaluating my own position on whether or not new families would benefit from mentors, an idea I have written about here at various times. Are new parents ready or are they in too much shock? What experiences do they need to have before they can be open to questioning everything? Is this early stage I’ve described a prerequisite, like a summer course or boot camp?

I suppose I’m coming to terms with the idea you can’t teach experience, or help someone skip stages by simply explaining. I should know better than to think otherwise – this approach never worked on me.



  1. I would have benefited greatly from having someone to talk to when my daughter was first diagnosed, but when I looked at online support forums I found people who were struggling as much, and people who were beyond struggling didn’t want to look back. It isn’t easy to see the lists of things to do – i.e., take care of yourself, do the best you can, find and accept a little help, when my experience was, there is help, but help on the terms of others which isn’t always helpful, or help based on someone elses’s definition of the situation which is stressful to rise up and change everything to accept. Sure, I need to take care of myself but I am too tired to figure out how to do it and I cannot slow down to sort it out without creating more stress, AND, anything I do for myself brands me as selfish in the face of what my child is going through, everyone wants to help a martyr.

    • This sounds so whiney to me, and I have wonderful friends and do have help. At the same time, when you look at mentorship, there are so many stages a caregiving parent goes through initially, and it isn’t easy to match that emerging realization with well intentioned help… a mentor who has the patience to hang in there through those stages would be a blessing.

      • Shana – thanks for your response. You clearly articulate the problem with ‘helpful advice’, which sometimes isn’t really helpful at all :)

        One of the most irritating experiences I had as a young mother was in group therapy. I would talk about all the stuff that you and I know so well – the hard work, the worry, the appointments, the social isolation. The response of the group members was to reassure me that my own presence was enough, that I didn’t have to out-perform everyone else, that Owen wouldn’t benefit if I burned out – I think someone even said that none of it (the hard work) would matter in the end as much as my love for him. It was immensely compassionate and loving advice, and they were right. But, I was resistant to hearing it. Obviously no one understood what I was going through because “look at all the things I have to do”! Deaf ears, as they say.

        So maybe young moms just need a witness – someone who is a companion on the journey and who won’t fall into the pit with you, and who will watch for signs of readiness for new awareness and acceptance, and help explore new ways of being. And until those signs emerge, just be an observer and occasional mirror.

        Thanks again for writing Shana. Perhaps I won’t give up on the mentorship idea too soon…

  2. Do not give up on your idea of mentorship! The simple presence of a companion; not someone offering unsolicited advice- to provide active listening and who has some sort of understanding of the daily challenges of caring for a child with special needs is so critical. Forget any of the psycho-babble (this coming from a mental health nurse, no less) or seemingly harmless ‘advice.’ At the end of the day, I would have benefited from a proverbial ‘shoulder to cry on,’ as I am sure that many other parents would agree!

  3. What to write? I snorted in recognition when I read your stripped down, oh so true post. “Now, that period of time seems so short. In fact I rarely think about it. I don’t connect to that time as being anything other than the time before I started to figure stuff out. (Even though of course I thought that what I was doing at the time was figuring stuff out.)” That’s me all over. Your words struck such a chord with me because, as it happens, I’m on a train home from a Dravet Syndrome conference of families where I spoke this weekend. At the conference, I felt a mixture of emotions – the families were mostly young and in crisis – some just blinking with shock at their unbelievable circumstances of emergencies and sorrow. I would love to talk more about mentoring with you, Jennifer. Are we worthy? Are younger families ready? HOW CAN I HELP is the burning question in my mind – I want to protect these gorgeous and loving families from the pain we suffered. Is it even possible?

  4. It’s important for older parents to refrain from being prescriptive or too self-referential, IMO. If I’m asked about something particular, that’s different—of course I’ll respond with whatever I’ve learned. But specificity matters a great deal, I think, and should be attended to with care. I liked both Christine’s and Shana’s feedback; seems
    spot on. And not to worry, Shana, not whiny. Just real.

  5. I love the mentorship idea. We are youngish parents of a girl with what is so far only diagnosed as a rare genetic disease that has resulted in a global development delay. We’re grateful in many ways – she’s not confined to a wheelchair, in fact she’s showing signs of wanting to walk if her body will allow it; she *shouldn’t* die young; we don’t have regular urgent visits to the hospital but still plenty of appointments. But she’ll need constant care for the rest of her life. I cherish spending time with her but still feel lost most days, and just go from one week to another. Not sure where to turn for help, who to talk to. I’ve tried to find other parents but with no success. I know my wife is just as overwhelmed – probably much more. Don’t get me wrong she’s happy and being around her is a joy. Still, as mentioned it would be nice to have someone to email or call to just shoot the sh*t when it gets frustrating, and share whatever knowledge or wisdom they have.

    • Hi Glen, thanks for your comment… I’ve been thinking more about this idea since I wrote the post and am swinging back around again :)

      I’m curious: what support have you been offered (if any) by any of your daughter’s healthcare specialists or community supports?

  6. I’m also conscious of whining here, but will share a few thoughts in response…

    We haven’t been offered a lot really (and aren’t expecting a lot – or maybe don’t know any better?). As long as your child is not deathly ill the system seems designed to just get you from one appointment to the next.

    That said, we feel very fortunate that our daughter found a spot at the preschool at the Ottawa Children’s Treatment Centre, run out of the children’s hospital. She gets her physio and other therapy taken care of there, and there are specialized teachers who work with the kids on school-type activities targeted to their abilities. But the biggest benefit seems to be the social aspect. She spends time with other kids, which she can’t do anywhere else as most kids her age are doing “normal” things.

    As far as personal support, there’s not a lot it seems. People have their own problems and I try not to burden them with ours. I know that compared to a lot of parents with sick kids we have it easy.

    A family member recently told us about “service coordination” so we might get some benefit from that once we go through the process. I think that’s where we’ll find out more about respite and other programs like that.

    I only recently discovered your blog (via Donna Thomson site) but have read it in depth, and just want to say how moving it has been to read about Owen and your experiences and thoughts. You have such a gift for getting your points across, and your pictures are brilliant – joyful and heartbreaking.

    • Thank you for your kind words Glen, and very nice to meet a new visitor :)

      I have to apologize for asking you a trick question! I suspected the answer of course, because I know there is very little out there. Best that most places can offer is earnest psycho-social support – groups for sharing and comfort. Which has a place, but not as the only thing offered.

      I would have benefited from an occasional reality check (from someone who knows) as well as companionable silence (because sometimes that’s all there is, not because the person doesn’t know what to say). When the role is more as mentor instead of pretend-friend, the whining might feel less self-conscious. (When I say pretend-friend I don’t really mean it disparagingly – I mean the sort of relationships we have with people merely on the basis of disability. This doesn’t always provide enough foundation for lasting connection, or make one feel safe enough to really say what’s on one’s mind!) Anyway, the mentor is (or should be) well beyond the same stage, and will likely be less triggered and have more attention to give.

      Service coordination sounds promising. Hopefully you’ll get people who actually know more than the parents :)

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