Saturday, June 20, 2009


Buddha, in full lotus posture, calling Earth to witness: interpretation of 12th cent. gilt bronze, Pagan, Burma, in Hornton Blue Limestone, 24 inches high, 18 inches wide, 12 inches deep. Commission. Photography, Tom Foxall

When people, including some of my closest, dearest friends, see Sophie, they always say, Oh, she looks so good! They comment on her beautiful hair, her beautiful face, her "fashionable" clothes.

She looks so good! They exclaim, always, she's so thin but she looks so good!

A couple have even said, You know, she looks so good! I've never even seen her have a seizure! While I know, perfectly well, that they're being gracious, that they're expressing incredulity that someone so beautiful could actually have such a hard time of it, it also always strikes me in a curious way that there might be the tiniest implication that maybe, just maybe it isn't so bad? Because certainly they hear it from me, they read it from me, they know that something is bad because Sophie can't talk or go to the bathroom or eat by herself or really do anything by herself so it's got to be at least that bad. But I think, too, that most people want things to be better and they often want me to reassure them that things are all right. The alternative is just too much, I imagine, for them to consider.

But she always looks so good!

Tonight, I was at a party and children were invited. Generally, I don't bring along Sophie to these things because she's really not so great in a crowd. She is uncomfortable and, frankly, I'm uncomfortable. I can't really relax, enjoy myself, eat or drink and I feel vigilant. The way one might feel with a small toddler at a pool party. That kind of on-edge, distracted vigilance. Tonight, though, I brought Sophie along with the boys because she had been having an exceptionally good day. In fact, she's had a really good week. Dramatically reduced seizures, good nights and a spring in her step. I told a friend that I hated to jinx it, but I thought the homeopathic remedy might actually be working again. Too early to tell, I hedged, but it seems good. And then I knocked wood three times.

I was talking to a friend at the party who knows me, knows Sophie but has probably never really seen a big seizure before. And probably right after I had whispered that she hadn't had a seizure all day and I was so pleased with that, well, Sophie had a really big seizure. My friend stood up as I stood up and asked me what she could do. I told her nothing, just stand here and sort of block the whole thing for me. So she stood on one side of the stroller and I stood on the other, bent over Sophie as she seized. It was a big, long, ugly one, with groans and stiffening and jerking arms and legs. Sophie's face twists to the side and her eyes roll up and blink monotonously. I always go into a sort of protective crouch over her, almost like filling up the space around her so that she is shielded -- from eyes and sounds and enquiries. I think that I am probably really good at this because people were coming and going around me, drinking their margaritas and calling to one another. I've done this in so many public places that I'm almost certain that no one actually sees it. And in case you didn't know, there's really nothing one can do during a seizure but make the person comfortable as best as you can, make sure they are not choking and wait.

Wait until it's finished and she stops and then it's just some twitching and an exhausted sigh and her eyes flutter and she slumps to the side.

So that's what we did and when it was over, I calmly rolled Sophie's chair into the house and lay her down on the couch in the dimly lit living room. My friend followed me inside after a few minutes and murmured comforting things to Sophie and stroked her hair back from her forehead. And then she looked at me with tears in her eyes and I knew that it was tough for her. That it's horrible to see a seizure and very upsetting. I think she said something about how amazing I am as a mother, something that I brush off because really, it's what I do, what I've done, what I'll continue to do until God knows when.

But what my friend didn't realize is that I am grateful less for those words than for her witness. I am grateful that what she saw made her cry a bit, and as silly as it sounds, that those tears affirmed just how difficult it all is for Sophie, for the boys, for my husband, for me.

It's a kind of release to have a witness, someone who knows in some small way what it's like to watch helplessly as a seizure occurs. And then to realize that this is what we do, every day and sometimes multiple times a day, year upon year. I feel, then, that I don't need to reassure this person that it's not that bad because they've witnessed that it is. I feel, too, that they know, on some level, that while she may look good, there is This, too.


  1. I think what you probably hear a lot is an overcompensation a lot of people (like me) tend to lean toward when we encounter a special needs child. I think (and I hope I don't offend anyone or sound like too big an idiot in saying this) that for those of us who have no experience, we think that when a child doesn't have any visible signs that she's different from other children, that maybe it's reassuring to the child's mother to hear the positive compliments and observations to indicate that we don't find the situation uncomfortable. Maybe in our well meaning way we think we're helping but maybe all we're really doing is reassuring ourselves. The truth is I suppose a lot of us have no idea how to act. This sounds really stupid, but I'll post it anyway because it's the truth. I guess the logical question for me to ask you is, what is the response that you're the most comfortable with? I've been reading about you and Sophie for months, but if I were to meet you and Sophie tomorrow I still probably would have no idea what to do or say.

  2. What a moving story.

    When my parents visited recently I made them go to every single one of Marielle's doctor/speech/OT/audiology/chiropractor/ENT appointments, 1-3/day. In a selfish way I wanted them to see just how much work is involved and that it IS a big deal in our lives, no matter how normal she appears.

  3. Even though my daughter's disabilities are obvious, I still get the same thing...and I know about the "jinx" feeling too...once you say something positive...BANG! What a good post.

    Lisa, I am just speaking for myself, but, thanks for your perspective. You don't sound stupid at all. For me, the response would be.."Sophie (that's my girl's name too!) looks good...I hope she's having a good day." I imagine it's different for every parent. In any case, I rarely talk about any details with anyone. I just say..she has good days and bad days...and change the subject.

    Guess what today's word verification is? apill. "Sometimes, life's apill".

  4. Hey Monica...I so relate to that! My sister once got stuck staying over night in our home because of an ice storm...she saw all the icky details and my daughter even threw up at the dinner table...which we were so used to, we just hold out the k-basin, wipe up and carry on eating! She flew out of the house, next morning, like a bat out of hell, and the storm was still raging! I know I shouldn't have enjoyed that, but I did! Then there's my mom...not with rose coloured glasses, but with rose coloured eyeball implants. Our lives just don't fit in with that! I can write this here because I know no one in my family will ever find it! Thanks for the space Elizabeth!

  5. I know what you mean about looks -- it sometimes feels like people are trying to diminish something that is so hard that happens relentlessly. Where E-Niner's concerned, I usually hear things like, "He's so good right now." And like your toddler at the pool analogy, he's so good because I'm on that kid like glue. So I can TOTALLY relate.

    Totally on the same page with the witness thing, too. Intellectually grasping something versus living it are too extraordinarily different beasts.

  6. Lisa -- "Stupid" is the last word I would ever think regarding you. Your comments over all these months have always been intelligent and I have a sense from your own blog, your thoughts, dislikes and likes, that you probably say the "right" thing nearly always. When I wrote that post I was mainly thinking how important and grateful it is for my friends to witness what Sophie and we go through on a daily basis. It helps us to survive, really. I don't expect anyone but those who are in similar situations to really, really understand what it all means and is -- my writing is really just bare bones observations and rarely do I feel judgemental -- on what should or shouldn't happen. I like to think that I'm observing (and I generally save my judgements for things that are obviously awful). My friends -- both virtual and "real" -- sustain me, unequivocally.

  7. I'm coming on the tail end of this post, but I must echo Lisa's comment. I know I've probably made the same gaffes - trying reassure that WE aren't uncomfortable. But, it seems that it could make the situation even worse - which is the furthest thing I could want.

    My sincerest hope is that you continue to find the support your friends/family offer to you!

  8. This is a piece for your book, I think--if you haven't already covered it. I think one of the things that makes your writing so potent is to put yourself in your friend's shoes, the shoes for others not so friendly even, Sophie's shoes, your sons' & husband's shoes and to really look at the shoes that you yourself are standing in. Your have the ability to delve into what's going on around you.
    Good post.

  9. T--Thank you for your comments. I want to apologize, though, if I implied that people's comments about Sophie are in some way "gaffes," as you put it. I don't mean that at all -- it's really not what people say that makes a difference, actually -- better or worse. It's the sharing of, the witnessing of a moment. I know that that can't happen all the time, but it did yesterday and I wanted to convey to that friend my gratitude for it.

  10. I'm so glad you wrote this post. Understanding that it's also important that your friends sometimes see and know how hard it all is is something I'd never even considered. I think the culture I grew up in was very attuned to pretending everything is fine even when it's definitely not fine has led us to believe that it's the kind thing to do and there's clearly another side to that coin. This was a real eye opener for me and I really appreciate it.

  11. I love love love your ability to put into words something I can totally get. I get it. I get what you mean here.

    And I've always hated it when people comment on how good other people are looking - I want to say (when it's directed toward me) - "you're right, I've been a complete haggy crone for a while and now I'm fixing myself up better."

  12. your writing, honesty, and love just oozes from the page into my heart. Thanks for the grace of sharing in yours.

  13. I can so relate to this post on so many levels. Your thoughts and emotions, definately I share. Yes, there are days I want a witness too. Though i cant remember a time it has happened (only once when CB was 3 and had a grand mal seizure in front of 15 good friends at a xmas party). I wish it, but then i feel guilty for wishing it. Maybe everyone's better for not knowing. but it feels kinda lonely for me, ya know?

  14. Man, I love this post. I'm gon'na print it out and tape it in my journal. So the next time my daughter's health falters ( the drop in lung function, the diabetes diagnosis, more surgery, etc.) and my in-laws lone response is to state loudly, SHE LOOKS SO GOOD, I won't feel so crazy and alone.

    P.S. This post is a mustard-seed experience for me - when the buddha sent the grieving mother to search for the mustard-seeds. The worse mistake is to think we are alone in our suffering.

  15. I have chronic illness and people are always telling me how good I look in the same type of way that you describe. I can relate to this post. It is affirming to have people realize a bit of your reality on a firsthand level.

    1. Thank you for visiting and for your kind words. It makes me happy that you can relate to something that I've written. I do hope you find relief from your chronic illness.



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