Thursday, July 16, 2015

The Cora Era and the Passage of Time

In case you didn't know, I had an amazing girl we called Cora Lionheart, who entered this world on a ribbon of grace, and who then quietly left it on July 16, 2013. She was eight-and-a-half months old.

And what a girl she was! Just this tiny thing who radiated goodness, peacefulness and a feeling of acceptance. A girl who was less like a child and more like a great choreographer, bringing people together at the right times, moving us easily toward those we needed.

She was my light. She was our light.

One evening, when I was about eight months pregnant with Cora, I remember sitting on the couch with my husband, Jason, and feeling a very strange sensation radiating from my baby. "Do you think it's possible for a baby to hum?" I asked. We agreed that it would be impossible, but it was the only way I could explain the clear vibration I could feel within me. It wasn't a kick or a movement. It was a feeling, a sound. I felt it a handful of other times in the next weeks, and I remember clearly thinking, no other way to explain it, than that I have a magic baby.

I had more or less forgotten about the magical humming when it was drowned out by a traumatic beginning of life, an intensive care unit, and a mountain of fear. But one evening, as Cora was recovering from her first open-heart surgery, relying on a breathing machine, and littered with more tubes and lines than you could imagine, I held her hand. And all of a sudden, out of her arm and down her fingers, straight through to mine, I felt that old vibration, clear as could be.

I don't care if there is some scientific explanation for the humming. Maybe there is, and maybe it happens all the time. But for me, that feeling just assured me that Cora was a powerful girl. I will always believe that she is the oldest person I've ever met; a deeply spiritual being who came from another place, which I believe is the place of pure and limitless love from where we all came. And that she was here to remind us of that place.

Delicious being of light that she was, it was ever darker after she left.

It's true what they say, and when Cora died, a part of me died too. In the months immediately following, I literally felt as though my chest had been beaten with a baseball bat, and my hips were as sore as someone's who had carried a two hundred-pound load for a very long time. As time passed I began to wish that I lived in a country where the bereaved wear black, visibly in mourning, so that those I met wouldn't ever look to me expecting anything but sadness. I more or less stopped sleeping, because to go to bed was to wake up the next morning and face the reality that it was a Monday or a Thursday, or any day that was somehow carrying on in its same old way, blind to the absence of my most precious, most important girl. Selfish life, just pushing on, day after day. 

That's the thing about life: no matter what, it goes on.

In my heart, as I believe exists in all the broken hearts of all the mothers who have ever lost a child, there is a deep box of an unspeakable sadness. This box contains the most sacred pieces. The overwhelming love I felt for my daughter as I looked into her clear eyes. The fear in my heart as I tried my best to care for her each day. The decision to eventually let her go, to stop fighting, to accept. The memory of her suffering as she worked to leave life, and of my powerlessness to make it any easier. The feeling of holding her quiet, but very warm, little body in my arms for hours after she died. The sound of my shoes as we made that hopeless walk away from her hospital room that very last time. My guilt over the fact that I ever left.

Despite two years having passed, this box in my heart remains unmoved.

For a while after Cora died we were surrounded by Everyone. Our mailbox was filled with cards; our home, with gifts and flowers. There were touching stories of how Cora had changed lives. There were things to eat and things to plant. And with each thing I thought, There now, the world has stopped for a moment, and someone else has recognized that my girl is gone. We passed what would have been her one-year birthday and a giant burst of Cora Love surrounded us. We passed Christmas, Easter, Mother's Day, and all the holidays as they marched on. And finally we passed the first anniversary of Cora's death. On each of these occasions there would be new bursts of Cora Love, but then life would resume its pace, eventually becoming quieter.

The passage of time has been a hard gift for me to receive. I liked it better when I had seen Cora a week or a month before. I missed her less, because I had so recently seen her whole, real self. I could still feel her soft little hands or the exact weight of her in my arms. Her chubby knees. Her adorable toe that forever crossed over the other one.  And her beautiful eyes that seemed to contain within them all the depth, all the love and all the sadness of the whole world. I liked it better when letters about Cora spilled into my inbox, and when I saw pictures of her wherever I went. When everyone I saw brought the subject of Cora up with urgency and importance. It was all, to me, the Cora Era, and even though we were grieving, life made sense in the Cora Era. It was about Love. 

But the more time passes, the longer it's been since I've seen her. Some of my memories are leaving me. The beautiful Cora Era is moving away.

There are many analogies to explain the passing of time, but one that makes sense for me is to imagine myself standing on a very high overlook, surrounded by a warm wind that keeps coming. With it, the wind brings a relentless chain of experiences -- some beautiful, some frustrating, some painful, some unremarkable. But no matter what the experience, the wind, the time, just keeps coming, without pause. It is a constant experience. As soon as it's there, it's gone.

I've struggled to hold on to my beloved Cora memories. To the Cora Era. I've wanted you to hold on too. But I am learning, and I am, in a small way, letting go, and watching, in awe, as the wind goes by. When I think of Cora's grace, I feel that I can. I must respect and appreciate the things that have happened in the Cora Era -- profound, beautiful things. I must regard them with great adoration, while also waving them goodbye.

I believe that in order to live through tragedy, or even through the irritating or ridiculous parts of life, you have to practice radical acceptance. You have to look your life square in the face and say, "can I live with this?" Can I accept this, exactly as it is, with absolutely no footnotes and no conditions? Cora, during her life, and during her death, showed us how to do that brilliantly.

I've never wavered from that place of acceptance.

I have accepted that Cora's life was the life, the perfect life, she was meant to lead. I have to believe that. It's like putting everything I know about anything -- all the colorful small bits -- putting them into my hands like a pile of confetti, taking a deep breath, and blowing them into the wind. I am willing to let it all go, and to accept life, not as I believe it should be, but as it exactly is. That's been, for me, an act of true freedom.

If I do this, if I accept that life goes on, then I believe that the very deep box within my heart, while never going away, will become covered with many new things. These things may be joyous moments or complicated moments or happy/sad moments or grateful moments. These moments will respect the sacredness of that box beneath, while using it as the foundation for new happiness and new beauty. For unpredictable, magnificent life. 

And there are so many beautiful things that have already laid down roots.

As I write this, Cora's deep, magical eyes are staring out at me from the several pictures I have of her around my desk. Hi, sweet girl. You were, and will always be, incredible. You left a true and beautiful (and toe-crossed) footprint in the world, and I love you forever.

Wednesday, November 6, 2013

To my sweet Cora, on her birthday

To close Cora’s funeral we chose to sing the famous gospel hymn, This Little Light of Mine. I’ve been thinking about those words in the weeks and months since that day. From the moment Cora was born, we were presented with very few true choices; none of the good ones at least. But there was one choice I could make, and I made it a couple of months into our journey: Cora was my little light, and I chose to let her shine.

In the space since her death there is nothing to do but remember. And in remembering, there is rehashing, reconsidering, doubting, regretting, praising, being grateful, being filled with despair. And I can see that as I meticulously comb over each memory I have, what I’m really trying to do is manufacture more time. For all the ways that I feel Cora’s life was perfect, exactly as it should have been, I will remain soulfully disappointed for the rest of my life that, no matter what I do, I can’t create more time.

I’ve often questioned our decision to let her go, that Thursday surrender when we changed our course from trying to heal Cora to deciding that she had been through enough. I don’t doubt the decision itself. When I look at the facts, the undeniable facts, things are rational and clear. Our girl faced challenges that were beyond human power; they could not be fixed, and they were piling up on each other and the pile became so overwhelmingly large that it snuffed out all the hope. Throughout Cora's life and everything we went through, we endured it because we lived with the hope that one day life would become easier for Cora, we dreamed that the troubles would pass, we dreamed she would live. And so when those two doctors we know, trust and love sat down with us on that Thursday to say the hope was over, we surrendered easily and out of deep respect for the girl we loved so fiercely.

But of course I rehash that decision every day. I toy with it like a rubik’s cube, endlessly fiddling with it to try to make all the squares line up, to see how it could have worked out otherwise – to end up in whatever universe would have allowed the chips to fall in the way I wanted them to.

As a parent, your primary job is to take care of your children. You’re handed these little beings, with really no one supervising, and you’re tasked with growing them and showing them this beautiful life. I know I loved her, and I know I showed her as much of life as I possibly could. But to me, those eight and a half months will always be too short. I wanted more.

Another thing that I do in the time since Cora has passed is replay the night of her death over and over in my head. Not to drown in morbid misery, but because ironically, it was a time of great peace and comfort. There was laughter in the room, the presence of dear friends, and the very clear knowledge that this life here on earth is actually the much smaller part of what’s going on in the spiritual world at large.

I could see that very clearly.

Cora walked us through that night, modeling grace, acceptance, and profound love, just as she walked us through every day before. With her in my arms it was impossible not to feel that the universe was a divinely compassionate place, that all was exactly as it should be, and that I was loved implicitly, exactly as I was. After she died and my friends and I all passed her around, spreading that amazing feeling from one of us to another, long after that, I held her naked little body on my chest like a koala. I put my cheek on her head, one hand holding hers, and the other on her back, which stayed very warm for quite a long time. I sat like that for hours.

It was one of the most beautiful experiences of my life.

When sadness hits me hard, I think of that. Of the peace that washed my heart that night. The feeling that I had succeeded as a mom, that I had lovingly shepherded that fierce little spiritual warrior through her life. It didn’t look like what I expected or what I wanted. But I had this one job, to love Cora through life, and I had started and finished that job well. What a thing to watch your child enter the world, and to watch her leave. And to have an integral role in both.

In the world since Cora died I am left with many feelings, too many feelings most of the time. But by far the biggest feeling is that of great pride.

I’m so proud of you, Cora, for the way you changed the world by changing, one at a time, the people around you. You showed me just how big life is. How love is at the core of everything. How important it is that I try to pass that love around to others, as much as I possibly can. How it’s the inside of things and the heart of it all that make life worthwhile. Because you were you – your beautiful and true self – I hardly noticed how sick you were. Your body was such a small part of who you were and are.

How I wish you could be here with us still, yet somehow free from pain and struggle, just lying on the bedroom floor next to Dominic and Cosette, or dressing up with them for Halloween. They were Peter Pan and Wendy Darling, and they desperately missed their Tinker Bell. Every experience, no matter how joyful, is somehow just short of its best without you.

But life goes on, in all its brave glory.

Dom still sleeps with the five pictures of Cora taped to the wall where he sleeps. We still ring a bell every night and say goodnight to our angel, our missing piece. The other day Cosette said, "Cora died, and that's okay except that I really miss her." That probably sums up how we all feel, arguably better than anything I could write here.

Sweet Cora, I accept that you had a special kind of lifetime. That you lived your life, that you weren’t gypped, that we didn’t get wronged. We were in fact, all of us, righted.

Happy birthday beautiful baby. I’m so glad you were my little light, and that I let you shine.

For those who knew you, you lit up the whole world.

Tuesday, July 23, 2013

Thank you, world

This will be my last post. Some people have asked me if I will continue writing this blog now that Cora is gone, and I'm afraid the answer is no. It has been an honor to introduce you to our little lionheart, and to have you behind us, and with us, on this incredible journey. But this was Cora's blog, this was the story of her lovely life here on earth, and today that story came to an end.

Don't get me wrong, I know for certain that Cora is with us. I and so many other people see her everywhere. And the imprint she left on the world is strong and, I hope, permanent. I know it will be permanent for me, and for all of us who loved her dearly.

Today's sendoff party for Cora was amazing. A line of people spilled a hundred yards out the door, everyone dressed in beautiful bright colors, and the gorgeousness of the day itself with a patchy cloud-covered sky provided quite a backdrop for the whole scene. Every single person that came to celebrate with us left their own individual mark; it was the perfect grouping of people. Our family, our friends, some people we had never before met but who Cora had touched, many of her beloved nurses and doctors. Even though there were five or six hundred people squeezed in the church, there was a feeling of intimacy, friendship and togetherness.

Dom cried silently in the front row throughout the entire ceremony. He is missing his little soul mate. At least three or four times he said, "I wish Cora was here." Of course I agreed. It would have been such a fine thing to have been able to hold Cora in my arms during all of it. If only it were just a party to celebrate her life and to introduce her to everyone she had not yet met. But of course, it wasn't that.

Still, she really did create quite a feeling; I believe she changed everyone who participated today.

And after the ceremony people stayed for a long, long time to pay their respects at a beautiful reception. Our dear friends came to our house after that, and they cooked for us and just sat with us. Some are still here now. This evening we all walked to the park, and it was amazing to watch them throw their whole selves into entertaining Dom and Cosie at the park. We all ran Dom's circuit, which involved running to the slide, going down the slide, climbing through a tunnel, and sliding down a fireman's pole. Everyone did it with their whole hearts. True friendship; we are so rich in it.

If you have read this blog, even if only a few times, I want to thank you sincerely, and from the bottom of my heart. Cora lived an amazing life, with enough love for ten lifetimes, and it was my pleasure to share her story with you.

I hope my little girl will live in your heart, I hope she will encourage you to be brave, to be loving, and to be kinder to and more understanding of people, when the opportunity presents. I hope you will see things, and that you will think of her. And I hope that if and when you see us, you will talk to us about Cora, and then I can tell you not only how much she meant to us, but also how much you meant to us. That you were part of her journey, and of what made her life so remarkable. Thank you.


My Eulogy from Cora's Service Today

I want to thank you all for being here and helping us to celebrate Cora’s life. There isn’t a tremendous amount I can tell you that I haven’t already told you through my blog over these past several months. But because in a way I have been Cora’s voice throughout her life, I wanted to take the opportunity today to share a bit more with you.

As you know, Cora was born on November 6th. We didn’t have any indication that there would be anything wrong, and I approached her birth with a sort of cavalier attitude, thinking number three would be a slam dunk. But as you all know, I went into the hospital that day to have her, and our life was never the same. When she was about a day and a half old, we learned of her first heart conditions, and we were transported to UCSF in a complete fog, and filled with fear.

Those early days were some of the hardest. I’ll never forget that first night at UC when it felt like a scary and ominous place, and Jay and I clung to each other as we tried to sleep for an hour or two in a dreary waiting room on the 15th floor. It felt so unnatural to have concrete walls separating me from my child. She was intubated then, as we waited for her first surgery date to arrive, and so I had to ask for permission to touch my child in certain ways; and I was hardly ever be able to hold her. At that point Cora was my baby, but I didn’t know her at all yet. She was a tiny thing – just 5 pounds, and I saw her as very fragile and delicate. But one night, about four nights in, I got a nurse who asked me if I’d like to hold her. I’ll never forget the feeling of having her in my arms that night. That’s when I knew for the first time that Cora was a magic baby. There she was, with central lines and a breathing tube, very sedated. And yet when I held her in my arms, all my problems fell away.

It was around that time that a friend from junior high school who I had completely lost touch with for about twenty years re-entered my life. She came as part of a procession of people, thanks to Facebook and the short blurbs I would post there. But this friend wrote me a note I will never forget. A note of great love and compassion. And she signed off with the last line, “I will pray for you and your husband to have strength, your surgeon to have steady, confident hands and for little Cora to have the heart of a lion.” And as you know, that line stuck around, and Cora became from then on, our little lionheart.

We made it through the very dark and tenuous weeks following that first surgery, and then one day the doctors saw Cora fit to be extubated, and then, one by one she came off the medications, she started eating, and sure enough, we reached the happy day when we were given the green light to finally bring our baby home, and we were discharged on a Saturday in mid-December. It would be the first of eight times we were discharged in Cora’s life, and that time we stayed home for six days.

Thank god we didn’t know at any point what lay ahead on our road. I feel like we lived in each day, and we took it as it came. That was the only way to live, and by doing that, we stayed sane and mostly happy.

But I can remember being so scared a lot of the time. All I could see in those early months was fear and difficulty. I looked around at my friends who had children at the same time as I had, and they were healthy and “normal” and I felt that life had handed out the cards, and that our sweet Cora had drawn the short stack. That we got gypped. I desperately loved Cora and wanted the best for her, but I was afraid and terribly lonely. I shared things with my close friends and family, but I withdrew from people outside that circle, and I was angry and annoyed by almost everything people said to try to comfort me.

We went in and out of the hospital a few times during the month of December until we finally landed inpatient for what became a five month stay. The road became rockier, the things we saw became more intense, the news became worse.

But then something miraculous happened. I had the intuitive thought one day that I should write a blog about Cora. I know this wasn’t my own thought. My natural state is to protect myself and my family. To guard against harm. To be very private. And yet, here I was putting it all out there for anyone in the world who wanted to read it. I know that was all Cora.

You see, I believe that Cora has always been, and will always be, a spiritual being. I believe that she lived the life she was meant to live, and I believe she was the only one – besides perhaps god – who knew what that life would be. Everyone who visited her was affected by her, in the same way that I was when I held her that night up in the NICU. She made me feel better. She saw me. She didn’t ask anything of me. She was an absolutely beautiful spirit. And I will never know whether it was Cora or god or whatever or whoever that led me to write that blog. But doing so gave her a voice, and it let that peaceful feeling, that Cora feeling, spread farther than it ever would have been able to if I wouldn’t have written. Cora was a gift to me, and my gift to her was to share her with the world.

After I started writing the blog, I guess the fear that I had felt all her life until then, just fell away. We walked a terrible and scary road, but with each day, what we mostly saw was beauty. Cora made things beautiful. I took great pride in decorating her hospital rooms and giving her beautiful blankets and beautiful things. It’s what she deserved; it’s what I could do for her. We surrounded her with lions, we dressed her up in clothes each day that we could. I bought her fancy baby soaps and lotions. I always tried to give her the best of everything I could, because there was so painfully little that I could actually control.

During the times when we were privileged enough to have Cora at home with us, we lived life to the fullest. We swam with Cora, we went to the park, we went on a mini-hike, we went to the zoo. I fed her chocolate ice cream. She didn’t know quite what to do with it, but it made me feel good. I can honestly say we never wasted our time feeling sad about what was to come. We loved Cora as hard as we could, we made her a concrete part of our family, Dom and Cosie adored her. And if given the chance to relive every moment of the past eight and a half months, I can say there isn’t a single thing I would do differently. That in itself is a profound gift.

What I want to say more than anything, is that I feel extremely privileged and extremely proud to be Cora’s mother. I know the things we walked her through were among life’s heaviest and most difficult. But if you only saw the duration of Cora’s life, and if you saw it to be a great tragedy, then you would have dramatically missed the much larger picture. I don’t know what one specific message is Cora’s message. Some people tell me that she helped them be more deliberate, more connected to their kids, or to have more perspective. One person told me Cora helped her have faith when she couldn’t find any. Above and beyond any specific message, I think the beauty of Cora’s life was a shared experience. A period where time literally stood still, and we all, everyone who visited her or loved us or read about Cora, banded together and shared an experience, and felt love.

Cora reached a large army of people.  On the day of her passing, ten thousand people read her story. Imagine a little girl, touching ten thousand people. Imagine any of us doing that! And I don’t believe it was merely because it was tragic or because Cora had gone too soon. I believe Cora touched people because she was a spiritual being, a master of relationships and communication. I believe she spoke to people’s souls. I know she spoke to mine. So imagine this magical little girl who touched everyone she ever met, and many thousands of people she never did, and then imagine getting to mother that person, and to feel that connected and that grounded and that loved every single day. That was me. For as long as we live, Jason and I will never believe it was anything but a profound and overwhelming privilege to parent Cora.

There were so many times over the past months where I felt grossly inadequate. I fumbled my way through very unfamiliar territories, I felt extremely powerless. I cried during rounds. One afternoon, feeling particularly beaten, I laid my head down right next to Cora, as I so often did. And without saying a word, I told her how sorry I was for all the ways I may have ever let her down. And I just remember her starting right into my eyes, and right then just washing it all away. She worked her magic on me one more time. She gave me pure love, and she raised me to my best self. She just had that amazing quality.

The last generous act Cora gave us was the night of her death. She walked us through it perfectly, she made things easy, right to the end. Jason and I had the extreme privilege that so few parents get – to watch their child come into the world, and to watch her leave it. It was a thing of such beauty there are hardly words to describe it. But we were all left there standing, admiring our girl, her stunning life, the impact she made, the beauty she brought to every minute. It was like watching a dazzling performance – and we, the audience, just silently stood by in awe for a very long time afterward. I think we will all be doing that for a very long time.

And that’s what it felt to parent Cora. On the whole, it didn’t feel hard or painful or tragic at all. It really just felt beautiful.

If you would like to receive one of the beautiful keepsake cards from Cora's service today, please email me at and give me your address. I would be so happy to mail you one.


Sunday, July 21, 2013

A large hole in the world

These last couple of days have been hard. Well, they've all been hard. But these last ones have felt particularly so.

As we approach Cora's service on Tuesday, I have a heaviness in my heart. It's natural for things to reach a sort of crescendo in the days following someone's death, and then after a while, to have things calm down a bit, and in some way, to have life go on. It's just that, for us of course, it can't ever just "go on" again. We will do normal things as we always have, as we have even during these past few dark days, but there is a very large hole in the world where Cora used to be and very much should be, and we are left staring it, not really knowing which way is up.

Our life feels oddly quiet.

I got a photo today from one of our beloved nurses -- she was just telling me that they were thinking of us and of our little Lionheart. It came at a nice time, just as I was reading Cora's obitutary. Those two words together are so fundamentally wrong; no unnatural. Insert child's name here: ____'s obituary. I just believe having to say my child's name, and then the word, obituary, is cruel. At the same time I hated having to read it, I admit that seeing her beautiful face shining back at me from the newspaper made me feel the slightest bit better. Cora's eyes always work their magic.

Dom and Cosie have been weaving Cora into their regular conversation. Poor Dom is trying to make his way through how to grapple with it, vacillating between deep grief and a kind of nonchalance. And Cosie is mostly just trying out a new vocabulary. A conversation in our house today went:

Dom: That's Cora's stuffed animal.
Cosie: Yeah, but Cora died.
Me: Yes, that's true.
Dom: Yeah, but that's okay, right mama? It's okay that she died, right?

It's either that upbeat tone, or his big sad and begging questions, like, "Who will be Cora's daddy where she went?" or, "We haven't been to see Cora at the hospital in a while, won't she be getting lonely?" We do end up repeating the same information over and over again, and we probably will for a long time.

Fortunately there are still some more humorous conversations, like this:

Cosie: I'm gonna marry Wyatt.
Dom: I lost the person I was gonna marry.
Cosie: You should marry someone else, Dom.
Dom: Yeah, I think I'll marry Joaquin (our friend). Because boys can marry boys, right Mama? That's possible, right?
Me: Yep. That is possible.

Dom participated in a quarter-mile running race today. He sprinted the whole way; he was so proud. He got a medal. It was a bright spot. And later at Grammie and Papa's we swam with the kids, dove for things on the bottom of the pool, and watched them spin in circles in a post-ice cream sandwich frenzy.

It's all very normal, only it's not at all.

I am spending a lot of time looking at pictures and watching videos. Never was a child, especially a third child, more photographed than Cora. And thank god. I treasure every single video we took, every picture. I've considered wallpapering my house with them so I could look at her sweet angel face every minute of every day.

One photo in particular, I love. Well, I love so many. But in this one, my Mom had come to visit and I'll never forget, she was putting so much energy into doing this puppet show for Cora. She was practically breaking out in a sweat. But her efforts were worthwhile, because Cora was delighted. She was so, so happy that day. And the picture makes me smile, but of course, it also makes my cry.

Little Shebs, one of the four loves of my life. I'm missing you very deeply tonight.

Friday, July 19, 2013

Happy Noise

We're still living the surreal post-loss-of-a-child life, proofing death certificates, making arrangements, and fielding the kids' tough questions about where Cora is now, and why we don't visit her anymore at UCSF.

Our life is so, so weird. Because all of those things are going on in a household where we are still laughing, still playing, and in many ways still living the same life we always do.

As an example, I offer the fact that yesterday Dom and Cosie both dressed up as Snow White.

We are in the car right now driving home from my sister's house (Jay is driving) and laughter is ringing. Dom says, "Did you bring any milk for me?" To which Cosie replies, "I'm sorry, we didn't buddy!" And then, "It's just too bad, Dynamite." And when Dom cried, "Don't call me Dynamite!," she replied, "Oh, should I call you Dada?"

Cosie has always been funny but she seems absolutely intent on making us laugh, and she succeeds at it most of the time.

There is this delicious chatter and happy noise in the back seat. But with it, also the very sad remembrance that Cora's voice will never contribute to this sweet noise. And it makes me so very sad. I wanted our life to get crazier before it got easier. I wanted the chaos to get ever more chaotic, as it absolutely should by adding that third child. I so wanted Cora one day to yell, "Dom's hitting me!," or even to cry the tears of a three-year-old from the desperately whiny pit that all toddlers seem to enter. There are so many "nevers" that are falling through my mind tonight.

All my life I wanted three children. When Cora came along, I felt our life was complete. Despite all of the ideas I had to shift having been given a child with special needs -- like accepting that we may never go camping or on scuba dive trips (we don't scuba dive, by the way) -- I always felt happy and complete. And for as wonderful and rich as it was with Cora, and as beautiful as it still is today, I just don't know that I'll ever feel that complete again. These are some of the shifts and shocks I'm experiencing over these past days. A feeling of joy and laughter and gratitude, followed by a sinking feeling of the life we will never have again.

As long as we had Cora here, there was always the hope that she would get better. And now of course that hope has sailed away. And that's just another thing for me to let go of.

Those are the scary circular pits I can go into. But then there is Cosette to pull me back. In the back seat she is whispering, "Dom got stung on his bottom, so get out of my car mister! I wanted pink glasses like that, but now I don't have pink glasses like that. Look at! She got wet on her wet!"...What?

I know I have my three children, my three perfect littles, and I always will. I got the ones I wanted, absolutely, 100%, and without a regret or a reservation. And although it doesn't at all look like what I had hoped, I feel in so many ways I got the best of everything.


Many of you have asked about donations, and we finally have some information on that. We sincerely thank all of you for your continued love and support.

We request that all donations in Cora's memory be directed to Pediatric Intensive Care at UCSF Benioff Children's Hospital.

To make a donation, please make your check payable to UCSF Benioff Children's Hospital and note on the memo line or separate correspondence that the gift should be directed to Pediatric Intensive Care - B1333 in memory of Cora Vivienne Bousquet.

Mailing address:
UCSF Benioff Children's Hospital
PO Box 45339
San Francisco, CA 94145-0339

Thursday, July 18, 2013

Her Mark

I just finished writing Cora's obituary. I'm sitting here accumulating experiences I never dreamed of having. Such strange times. Meetings at funeral homes, talks about funeral services, surreal and sad discussions.

But there is a tangible state of grace around everything.

I know Cora is in my heart because although she's no longer here, she's still making me and everyone else around me feel better. Sometimes I get so overwhelmed with the void her tiny little chubby body left behind, with the need to snuggle her face, pet her hair, or get those head pats I was just experiencing and writing about a few days ago. The need to see and be seen by those eyes.

To not be able to feel her little perfectness is a sad and sinking reality.

But Cora won't let me stay there for long. Each time I feel those aches acutely, she works her way in by sending me a comment, a call, a card or a story shared from a friend. Tonight someone sent me this:

I just watched the most beautiful sight of mist and fog rolling across the sky lit up by the moon.      Cora is everywhere I look. She's part of god. I feel her.

These comments, to me, aren't just condolences. They are confirmations that Cora, a child from the spiritual world, touched and changed people, and she profoundly made her mark. They say to me that her life was large, and that it still is. That it can't be measured by normal scales like time and fairness; that her sweet soul will extend far beyond her imperfect body and its painfully limited time here.

If I could string together every comment and every sentiment that essentially said, "Cora changed me," or, "Cora made me better," I feel I could wrap the earth more than once. And each one I read makes me cry.

What a tremendous gift to have been able to stand beside a person who had that kind of impact on the world. She was such a smart little baby, she knew so much more than most of us. I can only pray she carries on using her magic on me to keep making me better, and to help me learn to live in a world that is somehow still turning without her.

I keep hearing about, and I completely agree with, the idea that happiness and sadness are the two most closely related emotions. How true it is. There has been so much joy in this entire experience. Not always laughing, happy joy, but deep and primary joy. The kind that comes from profound respect for life and the quality of beauty for which our limited language has so few words to describe.

Everyone knows what it feels like to have a moment when you teeter on the fine balance between happiness and sadness. Time stops. You feel both things leaning in on you. And in our limited human capacity, we can't stay there for long before wanting to tip the scales in one direction and just decide. Is it a happy thing? Or is it a sad thing?

But I hope one day to reach a more evolved place where I can exist in those moments with everything. All the happy, all the sad; all the pain and all the heart-bursting joy.

That's the place where Cora spent her whole life.

Soul Mates

Trying to explain to the kids, especially to Dominic, that Cora is gone has been one of the hardest aspects of all of this. Tonight we read from two beautiful children's books that attempt to explain some part of what happens after life. Dom listened intently, but in the end he fell to pieces and just wailed out question after question, like, "How will we ever see Cora again?" and, "Who will take care of her now? She's too little to be on her own!" The questions were torture to him, and they certainly were to me.

Sometimes there are so painfully few answers.

I have tried to tell Dominic that Cora is no longer sick, that she's so free and so happy now, and that she is always around us even though we can never see her again. But all I feel is helpless. These concepts are basically inconceivable to me, a grown woman. How could my four-and-a-half-year-old possibly understand and accept these ideas, ideas which really are so fundamentally unacceptable?

So mostly I just say, "I know buddy. It's just so very, very sad."

Dominic and Cora were a perfect pair. Dom used to tell me he was going to marry Cora. Cosette was going to marry a more socially acceptable choice -- her little friend, Wyatt -- but Dom was going to marry Cora. That way, he said, they could always be together. One night a month or so ago, he suddenly burst into tears and said, "Mama, I'm afraid Cora is going to die before I can marry her." That memory hurts me tonight.

I remember the first night Dominic came to visit Cora at UCSF. He had met her before, but this time she was a couple of days old, and she was already intubated and had central lines and all other manner of tubes and cords. He leaned up over her little bed, touched her forehead, and said before anything else, "She's so beautiful."

I've always feared that if something happened to Cora, Dominic would take it the hardest. They are my two oldest souls, so deeply feeling, so deeply connected. But I absolutely must believe that he will be okay. That they both will be. That their wise old souls will have some way to make sense of this, a way that supersedes my limited abilities.

Monday when the kids came to see Cora for what was the last time, Dominic and Cosette both crawled up in her crib and laid next to her. Cosie did what she always did: tried to bury Cora, one stuffed animal at a time, repeating, "She wants this one!" over and over again. And Dom did what he always did. He looked Cora right in the eyes, and he saw her completely and fully, beyond her body's failures, and he adored her.

One of the children's books we read tonight speaks about how when people love each other, an invisible string runs between them. That those people are connected, no matter how far apart they may travel, and it even connects them in death. It says that if you think of a person connected to the people she loves, and then everyone that those people love being connected to even more people that they love, and on and on, it becomes easy to see that none of us is alone.

How beautifully true in the world as I see it tonight. Cora has left the world with so many invisible strings -- far more than I could have ever dreamed -- that there must be a fine and intricate web stretching far across this earth. And I see that strong web just inches beneath Dom's feet, a gift from Cora, ready to catch him if need be.

I am asking Cora tonight to work her magic on Dom's soul, to do what she always did, which was to make people feel better. I know she can do that from wherever she may be tonight.