My Theory of Relativity


Sometimes I cheer people up.   Not because I try to, but because sometimes people will compare their own stresses to what they assume are mine and will be drawn to ‘count their blessings’.  I suppose I should live and let live, but I am drawn to comment…

(I find this type of post hard to write, so I will adopt the literary device of speaking to you, the reader, as though you are the one who was stressed out and – after being inspired and counting your blessings – is now feeling better.)

It’s All Relative

My experiences with my child are extraordinary.  Uncommon.  And have evolved to this point over many many years.  No one handed to me a diapered, tube-fed 11-year-old boy who – despite what well-meaning people want to think – is not improving or getting better.

Rather, I had a complicated pregnancy.  Which required surgery in utero. And then I had a sick baby.   Who turned out to be deaf.  Who then turned out to have multiple significant disabilities, revealed excruciatingly slowly over a long decade – revealed not by things happening, but by things NOT happening.   The only actual shock was the first one – the moment I understood the routine ultrasound was abnormal.  My capacity to absorb information and alter course has increased a million times over since that first shocker, and yours would have too.

Your own experience is your own experience.  You might find it distressing that your child is not doing well in school, or that your baby is colicky, or that your child says she hates you.  And I can fully understand why you might feel like I’m the last person you would want to complain to about it.   (And honestly, I’m too tired to really give you support anyway.)  But you should not dismiss your completely normal stress response because you think I’m worse off.

It’s Disconnecting

People often tell me I’m inspiring.  When it’s other parents in similar circumstances, I can appreciate the sentiment.  And there are occasionally other situations when it feels appropriate and authentic.  But when you said it just now, it made me wince.  Because it was followed by ‘when I face (insert difficulty here), I think of all you have to endure and I count my blessings’.  (Those darned blessings again!)  So what does that mean exactly?  What are you trying to say?  And how do you suppose I might feel, hearing that?  Should I feel good?  Would you?

This might feel unfair, I know, but I’ll say this anyway:  It’s a little like showing up in a soup kitchen, ladling out a meagre portion to a starved, beaten-down man and saying “You’re so inspiring!  Look at what you have to deal with!  I am grateful I’m not like you!”  (Did I just call myself a starved, beaten-down man?)

I suppose what I’m saying is that, even if you’re feeling and thinking it, it’s really not necessary to share it with me.  In this case, the spoken admiration is just your swallowed fear.  If you’re thinking it makes me feel good – it doesn’t.

It’s Not Actually True.  Maybe.  If You Asked You Would Know For Sure.

Please don’t get me wrong – I know that you care for my family and me and are doing your best to express it.  But your statement reveals that you think I have a really hard life – and that always invites pity.  What you fail to realize is that again, it’s all relative.  You, stepping into my life, would certainly take some time to adjust and for sure it would feel like a very hard life.   But that is not the case.  I’m not you and I never was.  I don’t think I have ever thought I have a hard life – but I do have deep joy and sorrow and fulfillment and grief that make for a very full life and I would tell you all about it – if you simply asked.

Maybe you do want to know, but instead you say ‘I just can’t imagine! It must be so hard.”  (followed by “You’re so inspiring!”)

There is no room in this exchange for me to tell you that most times I don’t actually wish my son was different, only that the world was more accommodating.  That my hopes for my son used to revolve around achievements like walking and talking but over time devolved to improved sitting and swallowing and now are simply about not choking or aspirating.  And that actually, the lowered bar brings so much more peace than all that pursuit of progress. There is no opportunity in this conversation to say that I live every day wondering if he is going to live until tomorrow and that if he doesn’t, the depth of my sadness will only be matched by the enormity of my relief.   You haven’t asked me what I’m going to do when he’s adult because maybe you don’t want to hear me say I don’t know, I really don’t know and maybe he won’t even live that long.

It’s not hard to say any of this because it’s all so very true and I live it every day.  Hard would be denying it.

Maybe We’re Not That Different

“Look for the similarities.”  I had a therapist say that to me once.  Many times actually.  Look for the similarities, not the differences.  That’s where you’ll find the healing.  I tend to agree.

The world is full of disappointment, excitement, pain, passion, beauty.  I feel all of it, and I’m quite sure you do too.   Let’s talk about that instead.



  1. What an excellent post! You are so inspiring! (ha…ooops) No, I do really love it. It’s right on. Right there with you. The most difficult thing to explain…”There is no opportunity in this conversation to say that I live every day wondering if he is going to live until tomorrow and that if he doesn’t, the depth of my sadness will only be matched by the enormity of my relief. ”
    Beautifully done. I am not a writer…and I so enjoy those people who can put these things into words for me. Thanks.

  2. I love this post. I’ve said the words a lot of times before, I’ve said the I’m sorry, the you’re inspiring and just about everything you’ve talked about but it’s only now that I see it’s not helping anybody. You’re on a journey with your son that you share with us, but you’re a lot more than a mother who has a sick child. You’re a person, you’re woman, you have hobbies and so much more.

    • Hey Silindile,

      Thanks so much for taking the time to read my blog and then post a comment! I just read your blog through and appreciate the energy it must take to record your journey. I’ll definitely keep checking in.

      Just to add briefly to the dialogue: sometimes heartfelt appreciation is very welcome, and I don’t think that every time (or even any time) you’ve said those words that it’s necessarily a bad thing. it’s all in the delivery, timing and authenticity. and perhaps you’re coming from a place where you can relate, or are trying to…and that counts for everything.

  3. I came over here from Claire’s blog. You’ve written this so well, and it is such a difficult thing to articulate. (I usually just mutter to myself, “I’m tired of being inspirational”.)

    Lovely. Thank you.

  4. I guess I always think about intention.

    Some people can whip off “You’re so inspiring” in a flip or dismissive way, or in a way that really separates your experience from theirs (like you’re a freak). Or by talking about how “hard” your life is, it’s like they think your life is a tragedy — they don’t get the richness and how joy and pain can be all mixed up together.

    But often times, I think people say something like that because they’re reaching for some kind of connection, and they truly don’t know what to say, because they just haven’t had any experience with life with disability.

    I think about how I’ve felt before in certain situations I haven’t experienced — like the death of a spouse — and I realize that I’ve said stupid things before — just because I wanted to say something, anything, as a way of reaching out.

    And I would hate for people who have good intentions to feel like there’s a “right” and “wrong” way of talking with me. I feel that would put an even bigger barrier between us.

    But I do understand the frustration.

    • Hey Louise,

      Sure – I don’t think you’re wrong. Well-meaning people say awkward, regrettable stuff all the time. Myself included :) In this post I am simply exploring how I feel when I hear it… I would also say that while there’s not necessarily a single right way to connect with me, there is most definitely a wrong way: an inauthentic attribution of superhero qualities on to me that only serves to mask fear underneath. Don’t get me wrong – nothing wrong with fear! But I’d rather connect about what’s real, not what ‘sounds right’ (which in the end only gives comfort to the person saying it).

  5. Hi, I’ve been reading you for a while and wanted to comment on this post. You’re such a beautiful writer and it just pulled me right in. I often have people say “I don’t know how you do it.” and other such nonesense. The one that gets to me the most is “you must have been chosen to be his mother because you can handle it.” Often I respond to that by saying, “if he was your son, you’d handle it too!” and some people get what I’m saying then.

    My son is autistic. I hope I’m never caught saying to a parent with a child who has a different difficulty, “I feel lucky because my child doesn’t have…”

    I, too, want to have, am open to having, an indepth conversation with anyone who’s curious. I try to appear open to honest questions. Instead of telling me how I feel or what I face I really, really, want people to ask me!

    Sorry for the ramble. I go on and on like this IRL too!

  6. I have to respond by saying… you know how to shoot from the hip… and say it like it is! I find it is the same well meaning person who says “You’re so inspiring” in one breath, then turns their nose up when six year old soils his diaper in church, or does not want to take his hand when offered because he drools too much on it.

  7. This is a great post. I especially like the “It’s Not Actually True. Maybe. If You Asked You Would Know For Sure.” That speaks so truly to the life of disabilty on all levels. Thanks

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