Friday, June 17, 2011


I had a great conversation with a pretty amazing doctor today about "hope," and it made me realize how often that concept has come up through our journey with Gabrielle. I agree with Stephen King in that "hope is a good thing." In fact, I think hope is a wonderful thing because it provides us with a belief that the magnificent is possible. But hope is also a loaded word. It's full of expectations. And while some expectations are good and potential-challenging, some hopes set us up for anguish and frustration.

When Gabrielle was born and we first learned of her I-Cell diagnosis, it quickly became apparent that a "miracle cure" just wasn't in the cards, at least not for her in her lifetime. It's just not realistic. That reality was a tough pill to swallow (still is). What do you hope for if your baby girl will likely die long before you will?

Knowing that, what was also difficult (when she was born) were the well-intended messages from people talking about "the power of hope and miracles" ... as if the hoping for the miracles would cure Gabrielle's incurable diagnosis. I totally get the sentiment, and I do believe in the power of miracles, but the ones people were reminding us to hope for just weren't going to happen. There was no "hope" for Gabrielle ... at least in the traditional sense of the word.

Only a month ago I was out walking with my boys along the beach when I bumped into a good friend's mother. We had a great conversation, and she mentioned how much she enjoyed our "message." I said something to her that really crystallized my new view of hope. Something like,
"You know, hope's not about a cure. It's not about a magic bullet. It's not about touchdowns. Hope is real, no doubt, but in order for it to be real, it has to encompass certain realities. Realities like we're all going to die. You and I are going to die, and our children too. To think that hope can overcome realities like these isn't right. It's false hope. It's foolish, in fact. I think real hope is about our being able to appreciate the magnificent in light of these realities."
 – A quick aside: You know, I just looked up the word "hope" in our world's most populated encyclopedia, and I'm astonished by how little is written about it. Like seriously! Considering how much we use the word, how ubiquitous it is in our day-to-day ethos, can you believe it?! You'd think there'd be pages of writing like there is for anger. Very interesting. –

So this brings me back to my conversation today with our most amazing doctor (who came down to the ICU from oncology just to see how we're doing). We were talking about hope, and she was sharing how "hope-driven" she believes medical work is, and how it's really tough when things don't work out for their patients (i.e. working out meaning saving lives).

And that's the amazing thing, I said, about Gabrielle: despite the tragedy, she's opened entire cities worth of perceptual doors for Amy and I and our family members. And somehow, given who we are and what we're experiencing with her, we've refused to give up on "hope," but our understanding of it has had to change in order to encompass the realities of her circumstances. "Oh yes, hope is real," I was saying, "but it's more than just the future, and it cannot deny the inevitable, and it cannot deny reality."

I liked what our doctor said next, "Yes, and it's like our attachments to our hopes, to our expectations of how the future will unfold, deny us from seeing and appreciating all the beautiful things on the periphery." I couldn't have agreed with her more, and I shared how I think this happens because living life is something like wearing a miner's cap (see this earlier post for more on that idea).

Which reminds me of the conversation I had with the emergency nurse 4 nights ago when we were ambulanced back to Children's. We got to talking about death because I wanted to know what death from a lack of oxygen would look like. I'll spare you the details, but she did talk about how her time nursing in Ethiopia made her realize how beautiful death can be, and how much she learned from the Ethiopians in their acceptance of death as a part of the life cycle, and how our culture denies, denies, denies it! And how wrong this denial is. And how much heartache it causes us when we're finally faced with it and its reality.

This denial makes me wonder if, in our Western culture, when reach "the point of no return," that's why we consider the situation to be hopeless. That way of looking at it seems so wrong to me now.

And here we are with Gabrielle. There's no "hope" for her in the traditional sense, because the traditional sense entails a cure ... a remedy. And this fact always reminds me of what our paediatrician (who's as much a philosopher as he is a doctor) said about our culture:
"So much of the adjustment has to do with how we all expect our children to live a 75 year life ... but that's not always the case ... and it's especially not the case throughout the pages of human history. But when that doesn't happen, it's really, really tragic in our culture today, because everything's perfect."
So yeah, Gabrielle isn't going to live a 75-year life. In fact, she's struggling with this respiratory set-back in the ICU, and we're just hoping she gets better really soon ... so we can go home and have a few more weeks, and months, and maybe years with her as a family. But that's using "hope" in the expectational sense. And that's exactly why it's a loaded word. Not a bad word, it's just loaded.

So what am I saying?

Well, I think hope is a beautiful word. I really do. But I don't think we should use it like Stephen King uses it in Shawshank Redemption. I mean, let's face it, Andy (Tim Robbins) was a very patient genius, and the story worked because his hope of escape was matched by his genius ability to patiently escape. So while I agree that hope is essential, I – and quite paradoxically – also agree with 'Red' (Morgan Freeman) in that hope can be a dangerous word too ... especially when we hope for things that aren't attainable and/or grounded in reality.

So what can we hope for?

Truthfully, we can hope for anything we want. It's just that sometimes our unquestioned hopes can cause us to 'fall hard' when they don't materialize. And I think that's why it can be a dangerous word. Does that mean we should quit hoping in this sense altogether? No! That's not at all what I'm saying.

But can we hope without that embedded danger?

And I think this is what I'm talking about, because we're learning you definitely can, but it's a different kind of hope, and the answer is paradoxical: On the one hand I think we can hope for what we can control, but on the other hand I think we need to accept the uncontrollable. And if there's one thing we can control in spite of the uncontrollable ... well ... it's right now. 

As silly as that sounds, I think our "future hopes" sometimes rob us of the wonderful moments that are passing us by. Like what's more realistic and beautiful? To hope for magnificence in the moments we're presently in and can control? Or to hope for magnificence that future moments may or may not bring?

Ultimately I think we can hope for both, but I think we would do well to consider how "future-loaded" our hopes are, whether or not they're realistic, and whether or not our future-loaded hopes are preventing us from appreciating the "periphery magnificence," as our doctor put it, that each day brings along the way.


  1. With Ethan, I always said...we are "hopeful"...not that he will be miraculously cured, because this condition is so imbued into his DNA that it simply is who he is....but that he would live as long and as he was supposed to live, with as high a quality of life as possible...Every night when I kissed him before tucking him into bed I asked myself .."has it been enough time?"..and of course the answer was both yes and's never enough time with your child, your spouse, your parent, anyone you any time. But I knew that we lived in the moment and enjoyed each day so that if that night was his last....I was able to accept that had to have been enough time. Our hopes for our boy were met....he lived a quality life....98% of it at home ....and "healthy" for an I-cell kid.....Hope is's just that sometimes we need to re-define it's traditional meaning, or western meaning to truly understand it's implications. My hopes for Gabrielle are the same as they were for Ethan....that she live a quality life, with her family....feeling, giving and receiving love....and guess what.....that is exactly what she is doing....and what you are doing for her. When all of us reach the end of our lives what will really matter?......were we loved?....did we love in return?...if we can say "yes" we have truly lived and can ask for nothing more....Ethan truly Gabrielle is truly living.

    Sorry for the long was wonderful to talk to Amy to you both.

  2. Tara, don't every apologize for a long post again ... this was the best, and I especially love your three questions at the end. So true! And so consoling.

  3. Oh Tara. Thank you for this. I have read it over and over and I couldn't agree more. xxoooxx