Beautifully expressed.

I don't know if I feel happy or sad after that. Perhaps just something else to ponder.

you express yourself with such beauty. thank you for sharing.

I'm often witnessing profound little interactions throughout my week, but I never know how to blog about them. You've done it perfectly.

Beautiful post.

Hi! I am new to your site, and I love your writing! This was such a beautiful entry. Thanks!!

I'm with All Adither - one of your great strengths is that you regularly look into the minutae of life and out of it you pull some vignette that you are then able to articulate in a way that resonates with your readers and makes us think and feel. I even doubt that the recognition of the event is a conscious act on your part. But the articulation is a clear demonstration of your talent as a writer.

That was amazing, Kate. You continue to inspire me to take time and learn from the life that surrounds me. You are a gentle soul.

much love,ashley

powerful post. there really are more than two sides to every situation we encounter....you know how to remind us of that.love to you.xoxo

When my daugher was prepped for surgery last summer, they gave her Versed to make it easier to mask her.

Seeing her under its affects - loopy, sweet, unitelligible yet clearly intelligent in her attempts to communicate - was the most horrible part of the surgery for me.

It gave me a glimpse of what could have been, had she be born with any sort of mental disablity.

To you post, love always finds the unique life hidden inside those who are trapped by their minds or bodies.

And thank God it does.

Oh my. And thank you.

beatiful insight. and also a little heartbreaking.

Kate, that must have wrenched your heart and seemed like a sort of window into an alternate universe, a could have been...

the emptiness and yet the love, the constancy. all that Ben has lost with Liam's death, blessing and perhaps burden, both. oh my friend...a beautiful and profoundly sad window, that.

This made me cry a little bit.

What a beautiful entry. I think you've got me hooked on your blog.

I guess I'm the only one who feels the description of the one twin as a shell likely to register little may have been a tiny bit insensitive. And perhaps, maybe, not even accurate? Clearly your post is coming from a good place, and my comment isn't meant to criticize as much as it is to raise the possibility that even severely handicapped individuals might be registering a whole lot more than we typically give them credit for. I still love your writing and insightful perspectives, Kate, but this post was heartbreaking to me for reasons different from your other commenters.

love. that's all it's really about, isn't it? i love how you let it flow from you uninhibited, and let yourself see an invisible thread that always was and always will be between your sons.

Jennie, I hadn't considered that perspective. Point taken.

I'm still grieving the loss of Liam twofold - first, that he was born so severely injured (the loss of what I'd assumed would be an ordinary, healthy kid), and second, that he died (the loss of him as a son I would have loved no matter what).

So when I saw those brothers on the ferry I saw one version of Liam and Ben and I didn't know whether to smile or cry. I still despair at my body's betrayal of Liam, that because of what happened he was given the prognosis of being like a shell (compared to his uninjured identical twin). And what I saw in front of me was that stark comparison.

That's not to say that anyone on the spectrum of different abilities is somehow less feeling or less human or less deserving. I would have gladly run myself into the ground for him.

I know that people with severe handicaps give and receive love. I felt it with Liam - he took care of me more than I ever was able to take care of him.

I chose the word 'shell' and assumed the disabled brother would register little in the context of my own hurt and anger. He was a healthy baby who was catastrophically damaged by my faulty placenta, and it's left me having some very bitter, fatalistic days.

Thanks for your comment, and I'm sorry that came off as insensitive. You're absolutely right.

It's just that I never got to the stage of finding peace despite his injuries as other parents do, of adapting, accepting, seeing his heart and personality through a different sort of filter. There just wasn't time.

"There just wasn't time." My heart aches for you, Kate.

You have nothing to apologize for. Before my life as a mother I worked with so many children with varying disabilities. I have never read your blog and thought you to be insensitive to those with disabilities. No doubt you are a wonderful mother and took care of Liam like nobody else could. I don't know that any mother who has lost a child ever finds "peace", but I do hope that you will be kind to yourself and your body. You didn't fail Liam in any sort of way. You were strong for him and in the end asked for him to be taken.....I can't imagine having that sort of strength. You are beautiful and wonderful, sensitive and full of love. I feel so blessed to "know" you.

Much love,ashley

By the way and way off topic....I am in Seattle and each time I see an interstate sign for Vancouver I think of you:)

Kate,

I know that my experience is just mine and things aren't the same for others, but I still haven't found a sense of total acceptance about my son's diagnosis. I sometimes wish I could, but then I wonder if it is this piece of hope that I carry in my heart that helps me to advocate for him. Could I really push for what he needs and what might help him learn more and go even farther if I accepted 100%? I think that a tiny seed of not accepting is what keeps me hoping. I don't mean that I stand around all day thinking that he's being lazy when it takes a long time to learn something; I'm not in denial. I just don't want to set the bar too low, so I keep expecting more.

Ack, it's hard to explain. I just don't think that if I, living with a T21 son, can't seem to get to a place where my heart is calm and accepting how can you expect to get there about the possiblities that you were never allowed to see? You may never get that particular sense of peace, but don't sweat it because I don't get it either. We can each find peace in other ways. I find some by reading your blog.

Hugs.

Kate it must have been so difficult to be faced with this image of what could have been for your boys. I think you answer Jennie beautifully but at the same time I think, based on your experience, you are entitled to draw whatever meaning you want from this coincidence of seeing these men on the ferry.It is as difficult for those of us who struggle with children who did survive but are not 'perfect' to imagine the world sees them as 'shells' as it is for us to understand how we might have had to make meaning of them not being with us.This is your space and your journey and I imagine it would not be difficult for you to fill pages with the thoughts that ran through your mind on seeing those two men.

these are windows in and windows out, kate. many alternate worlds brushing up against each other, witnessing, loving, hurting, remembering loss, living with loss. it's like you are an open vessel to this, it's beautiful and overwhelming. this reminds me of the fictious novel 'I Know This Much Is True' by Wally Lamb written from one grown man's perspective of being a twin to his mentally disabled brother.

So much here Kate. But mostly for me tonight a juncture to say hugs as others do. It is not so much something I tend to say but when you talk of the 'fault' of your body I have the urge. In my mother-woman ego I want to pursue every avenue of unconditional support that can be spread about our kind.

It pains me when you take that responsibility like that. I've meant to say it before but now seemed the time I guess.

give yourself a break in that regard -- its too much to ask.

I had you in mind for part of this.. btw.

she says shylyhttp://motherwoman.blogspot.com/2008/02/waiting-room.html

ps. of course it meant it's

This made me cry. I had to come back and read it a couple of times before I could even think of commenting.

Is this what people see when they see my children? My 'normal' daughters with there very much disabled brother. Holding his hand and staring at him with love and he, looking off into space with the odd squeal, following along?

I don't think that your post was insensitive or uncaring. Just observation. Seeing the love from an outsiders perspective.

Thankyou for the insight. Honestly.

Kate, thank you for your response to my comment. No apology necessary, really. I hesitated to even post it, because I could imagine how you were seeing that scene through the lens of your own experiences. My point was just to add, to the string of comments, the possibility of seeing severely handicapped people in a different way. Because so many genuine and caring people are part of this community that you've created through your writing, and I just felt like I didn't want them to leave without a glimmer of an alternative point of view. That was selfish of me, it's your space, and you're absolutely right to feel whatever it is you feel without somebody (me) adding their two cents.

And of course you are still grieving. I desperately hope that someday soon you'll be able to see what is so clear to the rest of us; neither you nor your body are at fault for what happened to Liam. So many millions of things completely beyond our control have to happen in just the right way for a small group of cells to develop into a healthy child. It truly is a miracle every single time that it happens, and it's surely something no individual can assume responsibility for when it doesn't.

I usually lurk but have been trying to come forward more often. You and your commenters are amazingly insightful, and you express yourself so very beautifully.

I cannot imagine what you are going through, but your writing is so very heart-breakingly poignant. Thank you for opening your soul up like that - you are very brave.

They way you see things and put them to "paper" makes me ache in two ways: 1) with the same emotions and shared experiences as a fellow human, 2) that your searching, not-satisfied-with-nothingness as described in a newer post will be brought to fulfillment.