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.

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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 6^th. 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 15^th 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.

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