On Hope

Written on
Watching the Delhi Christmas parade

Watching the Delhi Christmas parade

As we’ve gotten through the holidays, and all the chaos and happiness and sadness that brought, I’ve been thinking a lot about hope, and about words. Vanessa says both more and less these days, compared to weeks/months/years past. On one hand, when we are out in public with friends or strangers, she can be incredibly chatty (way more so than Vanessa 1.0 who was more shy and introverted!), handing out Live Sincerely buttons and magnets to everyone in a restaurant, and loving to tell stories of her life to anyone willing to listen. On the other hand, when we are with her at her home, it feels like she is retreating more and more into herself and her own world. She’s still up and about and working on projects all day, but while working on that, she no longer pays much attention to the conversations around her, unless you expressly pull her in or engage her.

However, what occurred to me recently were the exact words she does say, when she does. They are, quite often, one of the following phrases:

  • I hope so!
  • I am trying!

Even when she doesn’t seem to follow what we are saying, she seems to sense the gist of it – and if it’s something we mention that could generally go well for us, she says “I hope so!”, and if we comment on something she has done well, she says “I am trying!”  Examples…

Me: “I have a meeting 11-12 today. So I can leave with you for lunch at 12. But if my meeting gets out early, we can eat earlier!”
Vanessa: “OK, I hope so!”

Billy: “Wow, you already scanned 745 pictures today. Good job!”
Vanessa: “Thanks! I’m trying!”

Christina, opening gift: “Yay! Thank you for these colored pencils, Vaness!”
Vanessa: “I didn’t get you that.”
Christina: “Oh, well you told me yesterday you picked them ou….  Billy was saying how you bought me more Christmas pres… Oh, well, I really like these! Thanks if you helped get them maybe.”
Vanessa: “OK!”    {this is not one of the above sayings, but still an OK said in the same uncomprehending-but-hopeful tone}

These words are less as expression of an actual, exact hope – she’s not really super hoping we can eat lunch earlier, or whatever it may be. She might not even say them appropriately in the conversation, like me saying I think my kids might be sick, and her replying I hope so! :P  It seems more a general vague statement, from Vanessa, as she tries to keep up with our words, and her life, and her own thoughts….. all I know is I am hopeful. And, I am trying.

Sorting M&Ms into decorative bowls at a Christmas party - a job right up her alley!

Sorting M&Ms into decorative bowls at a Christmas party – a job right up her alley!

How powerful to think that even as comprehension fades, as memories leave, as confusion lingers, her strongest urges that still remain are of hope, and of always continuing to try. I find that when I feel like quitting, stopping, sitting, giving up, not starting, not changing, not trying….  I think of Vanessa, stripped of so much, yet STILL TRYING. What is my excuse, truly? Granted, she is not really also dealing with emotions and complicated schedules and thoughts like the lot of us are – but that drive, that is missing in me often, she has in spades. It’s something I aspire to be more like.

As for the hope… I struggle with that. Well not exactly – hope is my truest, biggest emotion, the one that defines my soul and my outlook, the one I have even when all else fails in a moment. I am nothing if not hopeful. Hope is featured in the pledge Christina and I wrote for this project. Hope comes easy for me.

But as Vanessa struggles, as this journey progresses, it’s  been hard for me to define my hope, direct it. What am I hopeful for, exactly? I am currently losing my sister, one of my best friends, my companion on this road for as long as I can remember (I was 13 months old when she was born, so yeah, I don’t remember life without her!). She has an incurable, deadly disease, that is taking away her vital physical and mental functions. I miss her already, and I hate that she is confused and alone bearing this disease in her body. I think daily of the upcoming future where she will be gone from my life, and grieve the thought. None of this is particularly…  hopeful, eh.

Supporting Max at his preschool Christmas program

Supporting Max at his preschool Christmas program

Sure, I could be hopeful for a cure….  and I am, for future generations of women, and men, and children, who will find their lives intruded on by this disease.  I am absolutely hopeful that one day breast cancer will no longer kill people to the tune of 40,000+ a year. I participate in research (women – you can join me in the Army of Women!) in as many ways as I can find (our sister design company donates to a local research lab, too). If someone wants to swoop in with a miracle and “cure” Vanessa, restoring her to her previous smarts and health and beauty and happiness – I won’t say no! But to say I’m hopeful my own Vanessa will be “cured” or fixed or brought back to health…. it’s just not true. I don’t spend any time on hoping for that, because I know the reality of her situation, and spending my efforts and time pining away for that  particular miracle seems downright wasteful, robbing us of our time together now, that can be spent working towards things that actually make a real difference, now.

Vanessa giving the boys the first of the 63 ornaments... They loved the cinnamon smell! :)

Vanessa giving the boys the first of the 63 ornaments… They loved the cinnamon smell! :)

However realistic/(some might say pessimistic?) that may seem, I’m really not without hope! I’m hopeful that our global society will make good collective choices to work together on the big things that really matter. I have hope in humanity – that overall, goodness will win and evil will be snuffed in a world that won’t stand for it. I have hope in the power of “us”, of the world raising good kids to have empathy and compassion and be smart and use that smart to help someone else. I have hope we will eradicate diseases that steal lives today. I have hope we can get along, and look beyond the differences of our neighbors to form bonds and friendships, and build bridges and communities and solutions. I believe in people, even when they are flipping me off in traffic, cutting me in line, or pushing around my kids at the playground. I feel hurt and pain and see horrible suffering, but I am hopeful that the good in the world outweighs the bad, in the end.

Vanessa recently went to Alabama for an opening of the SCAR Project exhibit. She was so excited to see her other “sisters”, these other ladies who know too-well the journey she is on. Vanessa had a great time, and one of her SCAR sisters Sara has written about spending time there with Vanessa and Billy. I encourage you to read it in full yourself (her blog post is here), to hear her musings on living sincerely, Vanessa’s current symptoms and mannerisms, and exploring the concept of hope to her. I greatly enjoyed reading someone else’s perspectives on seeing, loving, knowing Vanessa.

“…. At one of the breakfast dates, I asked Vanessa if I could look through her camera. After watching her at dinner, I knew her card must be overflowing. I wanted to get a glimpse at what she is thinking about, what is catching her eye. She graciously allowed me to look. It was fairly remarkable. I got to see the last several weeks of her life…some pictures that reminded me of the tag project but there were so many others that, well, they kind of took my breath away. What I saw must be what day to day life looks like when you actually pay attention. The details of a room…the artwork, the flower arrangements, the colors. The things we do to “finish” a look but then never pay attention to them again. Vanessa and Billy had gone to a restaurant called the Mellow Mushroom. Vanessa took all these photos of all these things in the restaurant. I went to the restaurant later in the weekend and it took me a bit to realize, I am sitting among Vanessa’s photos. She also had photos of an iron, standing up, laying down. Pictures like that. But I enjoyed the opportunity to see where her brain is at right now and watching it unfold in her pictures. …..

At the gala event in Alabama, Vanessa had been invited to speak for a bit. She wrote her “speech” all by herself, consisting of an introduction, the Live Sincerely Pledge, and then a wrap up. She was so worried about it, but also so hopeful (there it is again) that people would embrace her message. I’d say they did – in her brief minutes reading what she had written, Vanessa mentioned the “fact” that she “didn’t have a lot of time left”, and said it very matter of fact and devoid of emotion in her current state!, but all around her lots of tears were shed and I know of 2 more “Live Sincerely  tattoos that were inked after that day. If you’d like to see her talk, you can find her at about minute 8 of this video from our friend Joules, for a very good example of how she is these days.

Vanessa holding her nephew Leo

Vanessa holding her nephew Leo

My struggle, in the end, is trying to reconcile my hope, with my pain. It’s one thing to be hopeful for a future cure…  but my sister is dying, now. I will, for as far as I can see, lose her to this. Hooray for all future people who are hopefully helped…. but it won’t bring back my sister, the cousins my kids should have had, the life Vanessa & Billy should have had. I’m hopeful to have a good life ahead of me…  but how unfair to have to live it without Vanessa. And yet, so many people in this world with horrible problems, pain, suffering – even if I feel hopeful myself, how to feel hopeful about the world when there is so much bad going on?

What I’ve settled on is that, for me, having hope is NOT having a naive belief that “with enough __ (vague “hope”, wishful thinking, prayers, faith, likes, optimism, smiles) all will be perfect/fixed/wonderful”. I believe hope can mean remaining open to all kinds of possibilities, all of which have some amount of good to be found in them. Hope, to me, means knowing everything will NOT be great, could be ugly, and may be downright hard/stressful/sad – but being still sure that there is meaning and beauty to be found there, too. In this light, hope can include feeling sad, feeling worried, and not counting on a miracle (while also not counting one out in the corners of our heart). It encourages being realistic and present in the moment. It reminds us to look around and see that we likely have something right now that someone else is hoping to have, or find. That we are the bringers of miracles, and can be the bearers of hope for others when they have to set it down for a time. Hope means making miracles, ourselves, not just wishing for them. Hope is seeing the bad truthfully but making sure we still see the good – and maybe even finding good INSIDE the bad. Hope is agreeing that every day won’t be perfect, and being at peace with that. I don’t believe hope is feeling happy and blissfully ignorant all the time, and wishing really hard for the future to improve things – I think it’s being realistic, and seeing the good that IS there, already. And striving to make good in places where it can’t be found now.

We have to own our part to creating the good we want, the change we want, the world we want, from the life we have – not just blindly “hoping” something improves. Hoping passively, quietly, internally, is certainly real. Sometimes when I am most tired, my most sad, that’s all of hope I have left, and that is ok. But when I’m at my best self, ready to fully be, I see real hope as a precursor to action. I intend to hope loudly, outwardly, passionately, through my words and my actions and my plans. I’m sure I’ll mess up, and have to dial the hope up and down as life happens…  but I want to, and do believe I can, remain a hopeful person, through anything life has in store yet.

I hope so! I am trying!

Every year we have a themed Christmas party, and this year it seemed right to go with glamorous/fancy! We got all dressed up and V even wore her curly wig. Then we did our usual family portrait technique - set the camera timer for rapid fire, and I shout out "moods" or directions between takes - happy! mad! tired! switch places! ;) We send love from our family to yours.

Every year we have a themed Christmas party, and this year it seemed right to go with glamorous/fancy! We got all dressed up and V even wore her curly wig. Then we did our usual family portrait technique – set the camera timer, for multiple shots, and I shout out “moods” or directions between takes – now happy! mad! tired! switch places! ;) This GIF makes me insanely happy: highlights if you watch long enough include the baby picking his nose and then with a mustache, my Dad remaining the same shot to shot, Billy’s clock “bling”, and us all thinking it’s done and starting to leave while it takes one more shot.  :) We send love from our family to yours.


  1. slbarto says:

    Jess~ That has got to be the coolest thing ever – I have never seen anything like that and have been staring at it for a few minutes trying to catch it all ;)

  2. Christina says:

    One of my favorite V comments was when she didn’t believe me that it was January (she was convinced Christmas hadn’t happened yet). I said, “I’m sorry, V, I’m pretty sure it’s January,” and she replied, “UGH! Okay, I’ll try!” :)

  3. Zann Carter says:

    Jessica, you are such a fine writer and have much wisdom. And, oh, you had me in tears, not with sadness but with the beauty of your words and thoughts…tears and then, bless you, you wiped them right away with the family photographs. Always such a nourishing experience to read these entries. Thank you!

  4. Tami Boehmer says:

    I agree with Zann, you are an amazing writer and you should write a book about all this someday. Thanks so much for sharing such personal, heartfelt thoughts and facts with us. I can so relate to your discussion about hope. Staying in the moment is key. Like Vanessa would say, I’m trying.

  5. this was so cool jess!! i have never seen the moving pictures at the end and kind thought is was funny that dad never really moved and lots picked his nose & then put on a mustache!!!!!!! :-)

  6. whoops! ignore the one above i didn’t refer to leo. so this is what it should have said: it was so cool jess!! i have never seen the moving pictures at the end and kind thought is was funny that dad never really moved and leo picked his nose & then put on a mustache!!!!!!! :-)

  7. Linda Haywood says:

    Wow! I am always speechless after reading your posts. I want to respond and yet my words seem inadequate and trite . . . and I find it hard to get past the tears. Thank you for taking the time to share. I am so amazed and thankful that you are “being in the present.” You, Christina, Billy and others have been the “bearers of hope”–not just for Vanessa, but for others as well. Such a difficult painfull road, walked with grace and humbleness. Vanessa and your entire family remain in my prayers daily.

    And oh, the photo is absolutely amazing!!! I so enjoyed it! What fun!

  8. dear jessica,

    you write about hope with such eloquence and truth. one of the most profound things i witnessed in carrring for those who were dying while i was a hospice nurse was that “hope” is a living entity, capable of enfolding us in its arms, speaking softly into our hearts and souls that it will not abandon us. the human spirit that drives us to hope cannot be extinguished; but it can morph to be what we need it to be through each step of our journey. such tender mercies and grace, falling upon weary shoulders, and into the sadness of our hearts, to be a balm to comfort and reassure us that hope will never die, a beautiful and wondrous chameleon, changes it colors in just the way we need it to – it’s still there, but morphs throughout our journey, knowing full well that we need to cling to it, and gracioously allowing that need to be fulfilled, however changed it may be.

    i love all the photos of vanessa, and i love her two favorite phrases and how they inspire you and your family to take joy from their meaning. please know i keep you all close to my heart. keep writing, jessica, keep telling vanessa’s and your family’s story.

    much love XO

    karen, TC

  9. Lisa Cohen says:

    Beautifully written Jessica and the photo portrait is amazing!
    Vanessa looks fabulous…and having so much fun.
    I think Hope is the tiny light that can be found when everything is dark…!
    Love you all.

  10. LISA says:

    You are in my thoughts and prayers!!

    Part of me living sincerely is focused on the way I treat each person I know at meet. I will look for their individual beauty and share my smiles and kindness. Simple acts of kindness can greatly impact those around us.

  11. I found you V, by landing on The Scar Project page, and watched the video from SCAR BAMA exhibition. A few clicks later I found your Live Sincerely Project. Life is indeed big…. Big events – good, bad, indifferent. I find wonder in the life of our earth, our galaxy, the universe. When I read your HOME page listing all the various things life can be, I read it again. I couldn’t agree more! If there’s one thing we need to learn, its acceptance of how our lives have evolved. It can be the hardest frickin thing to do. It’s incredibly awesome how this website can, and has, touched lives and moved our individual humanity forward….. Made us all stop and think. Live Sincerely.

    I make the pledge Vanessa.

    Jessica, thank you for your updates on V, and your ability to put into words ‘hope’.

    I hope, that when Vanessa reads this message, she says ‘I hope so’…. Because I say ‘I am trying’.

    “If there is one thing to learn from our own mortality, it’s how important it is to live sincerely.”

    Stay strong,
    Cindy – Cincerely

    PS – I have been using the screen name of Cincerely for 20 +/- years…. Funny, eh? :)

  12. Dana says:

    I got a friend request yesterday from a girl named Vanessa. I was cautious, and then looked at other friends that were friends with her and accepted. I have spent my whole Saturday, reading the whole blog. I started in the morning and ended with 1/25/2013 at 7pm, I was addicted and could not stop reading. I spent my whole day reading this. No one else in my my life cares that I spent my day reading , and if I mention what I read, they say “why do you always read about or think about bad things?” This is not a bad thing, this makes people stronger and more accepting of change, good or bad. This blog has made me think differently about everything.

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