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 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.

***
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.

                 

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.

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

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.

Those very last moments

I sit here living in an absolute state of grace, being carried along by the words of so many friends and strangers, and by the physical presence of so many people who have come to our home today to be with us. To remember, to cry, to plan, and to laugh.

I want to tell you about what happened in between the blog I had written last night and the last paragraph. I want to tell you how sweet and perfectly Cora completed her life.

As I had written, she was struggling and I sensed she was laboring toward the end. She really did fairly well all day, well enough to interact so lovingly with her siblings, and to still reach for my face when I held her.

But as the night went on, she was working. We patted her chest and suctioned her to try to help, but she seemed weak.

Earlier in the day I had asked Jason to bring in Cora's bathtub from home. It's one of those rather large baby baths, and Cora always loved sitting in it and splashing her little arms and legs. Watching her struggle I thought maybe she would feel better in her bath. So we filled it with warm water and we sat her sweet little body in the tub. It broke my heart to see her so frail. She didn't kick or splash, but it seemed in an indescribable way to be the right thing. Jason and I washed her from head to toe, and I don't have to tell you that I poured onto her every ounce of love that I had accumulated over the past eight months.

When we finished her bath we laid her in blankets fresh out of the warmer, and I put her in Jason's arms. The moment I did, she stopped working so hard to breathe. It was as though, so comfortable and safe, life finally became easy for her, and she rested comfortably in Jason's care.

After the longest time, he called me over. Her breathing had changed and we both knew the end was near. So he sat in a rocking chair and I kneeled over his lap, and we had the beautiful opportunity to just tell Cora every single thing we wanted to tell her, and to thank her for the pure blessing she gave us, and to kiss and encourage her as she journeyed away.

She spaced her breaths out and ever so peacefully, she just slipped away.

She was so, so very smart, and so very wise. She so generously chose the perfect time to leave this earth, a time when we could both enfold her in love, on a night when one of her very favorite nurses could watch over her.

She chose this moment, and then she just left this life as beautifully as the moment she entered it.

After her death, my eight or so girlfriends re-entered the room and together with Jason, we sat on the floor and took turns holding Cora, and we sobbed the tears of the brokenhearted as we touched her perfect body, finally free, and thanked her for her graceful life.

Several magical and mysterious things happened last night. One was that at 1am, about a half an hour after she died, her cardiologist walked into the room. He had come over to check on Cora and hadn't known that she had just passed. He just had the intuition to come by. Another magical thing was that one of Cora's other beloved nurses texted last night's nurse, just ten or so minutes after she passed, to say that she had just mysteriously woken up and was glad Cora was in good care tonight. I've heard so many accounts of people today who woke up last night for no known reason, only to find that Cora had gone.

I believe, as I have written before, that Cora is a child who lived in the spiritual world. I believe she understood the course of her life far better than I ever did. I believe she lived to inspire love in people, to ground them, and to move them into considering a better, more deliberately loving way of life.

And I also believe that at the moment she died, a wave of pure love was released from her, and that wave was so strong and so powerful that it spread over a great distance. And I believe, awake or not, we felt that love, and that we are all truly better for having shared the earth with such a magical being.

We will remember Cora's life at 10am next Tuesday, July 23rd at Saint Anselm Church in Ross, California. We are deeply grateful to all of you and welcome anyone who loved Cora to join us, wearing colorful clothing and with joyful hearts, as we celebrate the beautiful life of our little lionheart.

Thank You, Cora

As I write this, three of my friends are singing Bob Marley's, "Three Little Birds," to Cora, rocking her and surrounding her with love. She is getting so tired now; her body is working so hard. I can see that she is far along her journey.

We are all settled now, having moved into a permanent room back on 7 east. We had planned to move into one of the palliative care suites, but in the end the PCICU doctors wanted us with them, cared for by the same nurses who have loved her every day of her life. The doctors told us it would be their privilege to care for Cora, and they are doing it fiercely and with deep compassion and respect. She is the little angel of 7 east, and they are protective over her and I feel in my heart that they have given all of themselves to her care.

Cora's day has been full of love. Of course her life has been full of love, but especially the day. We had a continuous stream of visitors, family members, family friends, friends of Cora's, friends of mine. Our dear friends, the parents of Cora's little pen pal, drove from Sacramento to see us. My college friends arrived, one by one. There are seven people in the room right now, besides Cora, and it is so silent and graceful. She has hands on her and hearts with her, leading her through her life.

Today we stopped the last of Cora's medications. She is receiving meds to make her more comfortable, but no more twelve medications given at eight different times a day. No more upset tummy. And there are no more monitors at all. Just Cora in her beautifully made bed in her beautifully decorated room.

A friend that came tonight brought a beautiful garland she made that says, "thank you cora."

Over the months, I have often feared the future. I had no idea where our road would lead, what would be around the corner or what more Cora would have to endure. So I am deeply relieved to say with complete confidence to Cora, you will never be intubated again. You will never get another chest x-ray. You will never have another surgery. You will never get another lab drawn. All you have to do is be peaceful.

All Cora's life she has helped others. My friends would write me to ask if they could come see Cora, because they were feeling down and they wanted her to cheer them up. She makes people better and she always has. So tonight I've been telling her that she doesn't have to give anything else. That there isn't a single thing she hasn't already given to me or to the world.

What a beautiful thing to behold. Her life: so complete, so full. I watch in awe as she moves through, inspiring love.

***

I walked away from writing this, and now it all has changed.

Cora Vivienne, Little Lionheart, the finest baby girl I ever knew, passed from this life, very peacefully in our arms and covered in kisses, at 12:25am.

Sweet, sweet baby. I love you so.

Snoozing Beauty

I am so tired tonight so I will keep it very brief.

I find myself not wanting to reflect on anything other than this moment. This perfect moment, where my little Cora bear is sleeping soundly in a beautifully decorated bed, surrounded by lions. She looks about as adorable as any baby ever could. I will stay here tonight and I wish for us both a peaceful night.

When I think outside this room,

I immediately think of the other kids, the joyful time we had with all of their cousins today but my sharp sadness in not being with them tonight, my fear at how we will ever explain to them if Cora doesn't come home, my desire to protect them from the sorrow ahead. I think of tomorrow, when we will move to a palliative care room, the last room that Cora will likely ever live in. These things feel horrible and far, far too heavy.

And writing too much on this blog requires thinking and feeling, and I just don't feel like doing either. I just feel like being.

Just for tonight I want to stay in this room where Cora makes me feel light. Her chubby thighs and her soft little hands being the answer to all the world's problems. This is a place I can be. This is a moment I will savor.

This Perfect Universe

I am having trouble sleeping. I find myself not wanting to go to bed because I know it means waking up to another day and I wonder how I will have the strength to face it.

When I looked into Cora's eyes today, I saw a little girl who is very tired. I think there is a real chance that we will not be able to live that dream of coming home again. We had a long and very painful conversation with Cora's primary cardiologist, who came to the hospital this afternoon, on a Saturday, for the sole purpose of talking with us. It is his sincere belief that Cora will likely not be able to make that journey.

It was a crushing blow to hear those words.

And when I went back to her room and held her in my arms, I felt in my heart that she is making her way out of this life. I think for so long I saw that she was struggling, but I believed that if she could just grow, could just get a little stronger, maybe she would pass through this phase into one without so many problems.

But when I look at her now, I have to painfully admit that she isn't going to see that freedom in this lifetime. I see the difficult pictures in my mind of all that she has endured, and I just don't want her to endure any more. And I think she feels that release, and she accepts it, and she is at peace with it.

I feel very much that I am living a master class in spirituality. In trust, in love, in letting go. The most impossible mandates of our human condition, but the ones that I must strive to achieve in order to be the best mom I possibly can be to Cora and to my other children.

This afternoon the kids visited Cora. We put them in her crib with her. (Cosie desperately wanted to put Desitin on Cora's bottom, despite the fact that she was wearing clothes at the time.) Dom looked at her with the adoring eyes he always has for her. Their connection is limitless. The three of them were absolutely meant to be together, and it has been my great privilege to make that happen, even if only for this short time.

A very wise book I know well says, "we had to fearlessly face the proposition that either God is everything, or He is nothing. What was our choice to be?" If I choose "nothing," then this experience would mean nothing but a painful and cruel reality, and it would crush me. But if I choose "everything," than I am forced to believe that this is all a beautiful part of a loving god's perfect universe, and that even though I may never understand it, I can strive to accept it.

I am in awe of how my tiny ten-pound girl has changed the world. She has elicited love from the farthest corners of the world. She has made people better. She has made me infinitely better.

When Cora's time here is done, I promise I will not feel as though she was jipped or that her life was cut short. I will believe, as I do now, that she lived the life she was meant to live from the stunning moment she was born. A life spent gathering and spreading love. I feel very blessed that some benevolent being found me, imperfect and fearful, fit to walk her through her beautiful course.

Fear and Beauty

I had, all things considered, a very beautiful day.

Of course when my alarm went off at 4am, the first thought I had was, we are going to lose Cora, and I cried for the first of what seemed like three thousand times today. My heart continues to be very, very heavy. But when I arrived at the hospital this morning, something beautiful happened. Cora was sleeping, and her nurse told me she had seemed overly groggy overnight. However, the moment I walked in the room, she woke up and looked me in the eye in that very earnest Cora way. Then she started kicking and smiling and over the next hour she looked happier to me than I'd seen her in weeks.

It was the most pure and reassuring feeling that we have made the right decision. She seemed relieved. And she seemed free.

As I always do, I treasured my time with her today. We had so many nose to nose chats, so many face grabs (her grabbing mine, that is), so many lip smacking kisses, and so many times of me putting my cheek on her tummy and her patting my head like a drum.

The best things in life.

Grammie and Papa came for a long visit. Honestly, I could hardly watch them interact with her, feeling so sorry for what Cora will miss in that priceless relationship. And what they will miss in her.

I spent much of today on the sad, bitter side of things -- being walked through and signing a Physician's Order for Life Sustaining Treatment wherein we legally opted out of interventions, meeting with the Palliative Care service, calling to inform our wonderful pediatrician of the decision we've made. We have a meeting arranged with the Hospice pediatric nursing supervisor, and our insurance company has been informed that we have shifted from curative care to, as they call it, end of life care.

Those words clang around in the deepest part of my heart. An awful, unnatural feeling; a panic. But at the same time, the road we're walking feels deeply true and right.

All day I kept waiting for someone, anyone -- a doctor or a nurse or a specialist -- to come in and say, "don't you think you're being a bit dramatic?" Or, "Give her the benefit of the doubt! She will recover." But of course they never did. Instead all they said was that they deeply respect us and will support us in whatever lies ahead.

So I guess we are really here.

After the hospital today we had the very carefree, very wonderful opportunity to meet up with my sister and her family and our dear family friends for swimming and barbecuing. It felt a thousand miles away. There weren't any forms to sign or talks to have; just the feeling of family and of watching the kids play with their cousins -- for those hours, so free from all the burdens of this grownup life. My niece read the kids their bedtime story. I sorely wished Cora could have been there too. (And my other niece and nephew for that matter.) If I could have them all there on that one couch, I feel I could protect them forever.

And the only thing was that every few minutes I had the profound feeling that I was forgetting something, or that something was missing, or that I had lost my child.  Like one of those terrible dreams. And then I would get the stab underneath, that there is much truth in that dream for me. For us.

What I can tell you is that the mountain of love and support that came our way today deeply and profoundly moved me. Each email, each call, each comment. This love has changed our life.

If I feel anything, it is that I am not alone. And alone is the scariest of all human conditions, in my opinion. I can say with some certainty that I will never be free from fear or sadness and heartbreak, but I do feel safe in this universe that remains overwhelmingly generous.

The heaviest boots I've ever had

I'm feeling very heavy tonight and it doesn't feel like there is a lot to say.

We had a long talk with two physicians who know us and know Cora very well. They are about the kindest, most intelligent, most compassionate doctors you could ever meet. These doctors talked to us humbly and genuinely about Cora's situation -- not just the pulmonary hypertension, but the confluence of conditions that have piled up upon one another leading her on a terrible trajectory. And it is their very sad opinion, and ours too, that Cora has had enough procedures and medications and interventions, and that the time has come to just let her be as happy and comfortable as she can be, for however long she can go on.


No one of us, no doctor, no person, and certainly not me, can say how long Cora will be with us. They've never cared for a child quite like her and therefore it's very difficult for them to predict her course. But they do know that her heart is very sick and her sweet little body is tired.

In a very early blog post I wrote that, as a parent, you just want to know that there are more roads to try, no matter how long or uncertain those roads may be. I think the painful reality is that there really are no more roads that are worthwhile to try, and that the most loving, most generous thing we can do for Cora is to accept that.

Although nothing is fundamentally different than it was yesterday, we feel that our world has changed.

We will work on trying to come home, even if only for a short time. I will be building a little bucket list for Cora and I hope we can accomplish some of those things.

Precious Cora, you incredibly fine baby girl, we will let you show us the road from here.

A Concert and a Cath

Shebs made it through today's procedure with very little drama. After about three and a half hours in the cath lab she went down, still sedated, to get a CT scan of her chest, and then she was able to be extubated fairly quickly after getting back to her room. As she sits now she is breathing fairly well on high flow oxygen (which is a bit more respiratory support than she usually has), but hopefully that will only be temporary.

We've had a conversation with the cardiologist who performed the cath, so we have an idea of the findings. As usual however, there are no clear pictures. We really only know a little and we will likely learn more over the coming days about what it all means after we've had discussions with the doctors who know Cora best. We will also have a consultation with the Pulmonary Hypertension specialty team tomorrow.

What we know for sure (I think) is that the pressures in the right side of Cora's heart are elevated. We know that this is most likely attributed to her cardiomyopathy, and that her heart function, while improved from where it was when she was listed for transplant, has never been great. We also know for certain that Cora has a fundamental problem within her lungs, and that this affects her ability to effectively oxygenate her blood. We know that her liver continues to back up, and that she has a persistent problem getting fluid off her lungs. We know that overall, her heart is getting worse.

These are the few things we know. It's a small pile of information that is dwarfed by the large mountain of things that we don't know. Things that we may never know.

As I said, we will have conversations over the coming days wherein doctors, who are very educated and have a wealth of experience, will give us opinions on what is happening (a confluence of crappy things) and what can be done about it (very little). But in my experience, the only thing that matters is not what people think will happen, but what really does. It matters where we are and what we have today.

We were playing with Cora this morning before the cath. The nurses, my sister and I were dressing Cora up and posing her for photos. Our nurse laid blankets around her to hide the cords and tubes, and so that she could just be a baby in a blanket. There was lots of laughter and a warm and good feeling that was impossible to miss.

Our friend Liz came by to play violin for Cora and the other children on the unit. Cora kicked around and stared, fascinated, at Liz. Even though she may not be able to hear the music Liz was playing, it was obvious that she could feel it.

These are the beautiful moments that are much more definitive for me than predictions or prognoses.

All anyone can ever tell us is that they doubt our sweet and beautiful daughter can live easily or long in the state that she's in. They've been telling us that for months, and today's news was no different. The bottom line is that, of course that may and might be true. But I guess I'm not sure what exactly I can do with that information tonight, in this room at 9:00pm on a Wednesday, except just to go on alongside her, perfect little chubster that she is, and marvel at her, and love her, and help her to live life as fully and as fearlessly and as wonderfully as we can.

Cora is the perfect fifth member of our family. She has been since the moment she was born, and she will always be. And for whatever reason when I'm around her, no matter how much crappy news I hear, all I can feel is love.

Three Little People

Today Cora was about the same from a medical standpoint but she seemed a little more content. It felt like a relief for me to talk to her and pet her and do all the normal baby things, instead of just consoling her all day.

This morning a couple of the nurses stood talking to me and just admiring Cora. They weren't discussing her problems; they were just there to love her. I felt so proud.

Nonetheless, we had some scary episodes today; the scariest one being something that happened this afternoon. The attending physician had ordered a CT scan of her lungs, which today were even worse than yesterday. The fluid on her lungs is actually a separate issue from the pulmonary hypertension, but together the problems have Cora really struggling. Because of how fragile she has been, the charge nurse who was arranging for transport had the good sense to have two nurses to accompany Cora down to the radiology room where the CT would be performed. I went too. As soon as we set Cora on the bed for the scan she just fell apart. Her oxygen saturations went very, very low and she turned a terrible color. Despite trying different things to help her, Cora stayed that way for the better part of ten or fifteen minutes. I wondered if we would end up calling a code. Once she came back a little she was whisked back upstairs and the CT scan was called off. It was no longer as important as just keeping Cora stable.

Anyway, after that drama Cora got an expedient upgrade to 7 East, the PCICU (pediatric cardiac ICU). She's spent much of her life there and it always feels a reassuring place to be, even though that may sound strange. It should be telling that when I walked in, one of the nurses who has worked there for over 25 years said, "welcome home," and I felt glad.

Overall Cora is stable tonight, and she's in very good hands. Back to having her own dedicated nurse to watch out for her and grab her should she try to fall off of any cliffs. Tomorrow she will go for her cath procedure, and that's when we hope to get many answers to the questions of the past several days. Right now there's just a general sense of the spooky unknown, and my desire to keep Cora happy and comfortable through everything.

I should mention that in addition to the spooky unknown, there is one lovely, tremendous little girl who spent today wearing her pink "Miracle" t-shirt, and who casted her peaceful little spell on everyone she encountered. There is also one very sensitive, very wise little boy, and his sidekick, a very loving, outspoken and spicy little meatball.

They each and all fill out the parts of me that were unfinished before they arrived.

Each of them is so much, and like all children they can suck the life out of you and put the life back in, all within a three minute period. But they're the only way I can get through this life. I see them as little bundles of grace, and they spill light over every place they go.

Knowing what you have

Cora is still struggling away. She was about the same today, which meant not that great, but I felt progressively more worried for some reason. There seems to be an intensity in the air or something.

Not helping mitigate that feeling was a conversation I had with the attending physician who came by to say that, while he is hopeful that the cath will reveal a cause for the pulmonary hypertension that would be reversible or helped by medication, we should be prepared the the possibility that this could all be "very bad." In my understanding, they are concerned about the rapid pace at which the condition has presented, and they just don't know that there will be an easy answer. 

There never seems to be one.

Tonight Cora has a fever for some unknown reason. It could be that it's due to her working hard to breathe (which I believe to be the case), but out of precaution they have to send the full viral and infectious panels. Hopefully it won't result in a delay of her cath.

But enough about Cora and our medical labyrinth.

A while ago I wrote about "Cora's pen pal," a beautiful little girl who was born on the day before Cora, and whose parents became our dear friends as we, side-by-side, navigated the cardiac world. These two girls were very linked. One would have surgery; the other would have surgery the next day. One would get some scary news; the other would get news shortly after. But there was one step they didn't follow: Cora got to leave the hospital, and this little girl never did.

Last Thursday she passed away, having fought a very brave fight until the day before her eight month birthday. And today I had the privilege of attending her funeral and of saying goodbye.

I can't craft many words about this, except to say that by watching her family over the past eight months, and today, we learned something of grace and dignity and acceptance. And that they have found a way to gratitude despite the most unfair of outcomes.

I never imagined I would live in this world where the day to day problems just fade away, and the problems of your life become the very serious ones. But there is such truth around it all, and so little time wasted worrying about whether or not one of my children has developed a bad habit, or about what someone (who I may not even like) thinks of me. 

We are living life in it's brutal and glorious technicolor. 

I was thinking of the expression, you don't know what you have until it's gone. How untrue for this little girl's family, and for us. We haven't missed many minutes of it all, and we very much know what we have.

Unhappy Day

Today was one of those harder days. We didn't get discharged, and now we know we won't be discharged before the cath.

Cora struggled, beginning in the early hours of the morning. When I called from home for an update, I could tell the mood was tense and it sounded like she'd kept the overnight staff running a bit. She was desaturating and was working hard to breathe. When I got there early this morning it was easy to see something was off.

They were still talking about possibly sending her home, but agreed to do an echo to make sure, even though her saturations weren't good, that she was otherwise stable. Well, the echo showed that she isn't doing as well as they had hoped. The pressures in the right side of her heart appear to be elevated, and she now has pulmonary hypertension, which in my understanding means that the pressure is very high in the vessels in her lungs. She also has an open hole in her heart, which we knew (two holes were already closed in her surgery back in November), but it appears now that she is shunting across that hole. In other words, oxygenated and unoxygenated blood is mixing through that hole, and that's giving her additional trouble. 

These things all together make a fairly serious problem. Just how serious remains to be seen, but it will certainly mean more medications and possibly more future procedures. If the pulmonary hypertension worsens, it will be a very bad thing. More than anything it means that her trajectory is heading in the wrong direction.

All day, Cora was uncomfortable, fussy, desaturating, and unhappy. It took the nurse and I both trying to help her to keep her somewhat calm. I didn't get any of those good, happy Cora moments.

I just called for an update and as of tonight she is now requiring triple her normal amount of oxygen just to remain stable. I can feel us slipping on the slippery slope that leads back to the ICU and back to the more difficult times.

Maybe she will turn and show improvement in the next couple of days. I pray she does.

In the meantime we have the cath scheduled for Wednesday, and now we need that information more than ever.

It feels like a hard night to go to sleep, here with our two children who very much need mommy, but away from our one who is struggling. But yet I have to go to sleep so I can go to work and go see Cora and do the business of life.

I wish I could clone myself. I wish none of them ever had to do without me.

Blerg.

I'm praying for happier times.

In the spiritual world

Cora is getting ready to go home, most likely tomorrow. I wish I could say she is much better, but she really is not. She has developed quite a cough as a result of her heart congestion, and I would say, just overall, she is quite a distance from her best.

The reason they are letting her go is because there really aren't any new actions they can take to help her until they take a closer look at her during the heart catheterization, which is scheduled for Wednesday. Our hope continues to be that they will gain some answers to why Cora continues to struggle, why her oxygen level so rapidly desaturates, why she has the persistent cough, why her liver continues to be enlarged, and other questions. Knowing we have that procedure on the books gives me great relief. I don't know why exactly, but I suppose because it is some action; some plan. And I like plans.

As usual, we've just been trying to live life simultaneous to our hospital odyssey. We took Dom and Cosie to the fair on the Fourth and they loved it. They are more and more becoming each other's best friend and I love to watch it unfold. At the fair their favorite part was riding a tandem motorcycle with Dom on the front, and Cosie on the back. They laughed and screamed as the thing went around and around, and they acted as though they were daringly cruising the open road, tackling each loop with fearlessness and determination.

They are absolutely stronger and happier together than they are apart.

While watching the fireworks, Dominic was on Jason's shoulders and Cosette was on mine. I looked up at one point and the kids were holding hands. Just staring at the spectacle, and absent-mindedly holding onto each other for no particular reason, except maybe that their lives are better when shared.

Cora Shabora turned eight months old today. It was also, as it turns out, her 200th day spent in a hospital. The cardiac ICU nurses, angels that they are, dropped off a cupcake to celebrate.

I'm telling you, I am learning from Cora everyday. I don't think she is a Buddha or some larger than life creature. But I do think she is a little person from the spiritual world, whatever that may mean. I think she speaks, soul to soul, to everyone she meets, and it feels strange at first, but somewhat addicting, to communicate only in a language of love, and free from the crap with which we fill most our lives. Fear. Loneliness. Worry. Regret. Stress. She is a magic little baby in whose presence, these things just float away. 

I do not pretend to know why Cora drew the short straw when bodies were made and handed out. But I know that to see her life only in terms of the struggles she has faced would be to greatly miss the point.

In the spiritual world, Cora's world, I don't have to think in terms of what her life should be; I don't have to feel we were somehow robbed of a better, easier experience. I can simply believe that things are exactly as they should be. That it is only my limited pictures of what I think "okay" looks like, and my tendency toward fear, that make this experience seem, well, awful. 

There are awful aspects, of course. It's just that it's more than that. 

I never before experienced the volume of beauty that's surrounded me during the past eight months.

In so many ways, lucky

My thinking isn't quite right.

Having just put Dominic and Cosette to bed, I was considering what I should do next. I thought about writing a blog post, but then I thought, no, I'll go for a run. That sounds so great! So I went to get ready, only I remembered after a minute that Jay isn't home, and last I checked, it wasn't too cool to leave your house with two children in it. I thought for a minute about the fact that they are likely down for the night. Would it be okay in that instance? But some small shred of logic kicked in and I decided that, leaving children -- sleeping or not -- is an activity that is generally frowned upon. So no run tonight.

Let's just say, I know I have lost some neurons and synapses through this ordeal.

It was a hard day for Cora. Today, even more of her electrolytes were depleted. That meant no real progress on drying out her lungs, because the focus continues to be on electrolyte replacement. Her breathing was very labored today, and she was grumpy. Then she spiked a fever, which is never a good thing, but especially not in a hospital setting and not when you already have so many complicating factors in play. Because of the fever they sent blood cultures to make sure she doesn't have an infection brewing. Yesterday they also sent panels which will show if Cora has a respiratory virus. My gut is that she doesn't have a bug, but of course my gut is not the deciding factor.

We'll see. A sickness right now would be a setback. It will be 48 or 72 hours until we have any definitive results from those tests. So in the meantime we just wait to see which way she is turning.

Today was another day of the juggling master class for me. I left the hospital late last night, came home and slept for a few hours, went to work, went to see Cora, then came home at dinner time because Jay needed to leave for an appointment. Luckily, even though I was only able to spend a couple of hours with Cora, she had a very full social calendar of friends and family who came to entertain her (one of whom is still there as I write this.)

If I haven't mentioned this lately, we are so very grateful for our extraordinary network of friends and family who are always there for us, and who seemingly never reach the bottom of selflessness.

I've been reflecting on how, in so many ways, Cora is the luckiest little girl on earth. If she would have been born a healthy child, she would have been just ours -- mine and Jason's. People would have admired her, and they would have loved her. But they wouldn't have known her any more than we know the true heart and soul of any of our friends' children.

But because she was born with these unique challenges, we have had to share her. Because I've tried to share her soul and her character, people have loved her. And because there have been complexities, I've kept writing about her. Because the logistics of our life have been so challenging, I've had to ask for help. And with every complicated turn in the road, more people come into her life and into her story. And each of those people give love that fuels her, and each person who adores her pushes her forward.

And though I get the extreme privilege of being Cora's mom, I feel like she is a lucky little girl who belongs to a thousand people.

A Tuesday

I'm just hanging here at the hospital with little Shebs, who is currently completely passed out on my lap. 

Today was, I guess you could say, a pretty decent day. I got a good night's sleep last night and went to work this morning. Jason got the kids up and ready and then went to work himself, and Cora stayed solo at the hospital until I could head over after work. 

Even though I hate to accept her being here during the day without one of us, I have to admit it's never really like she's alone -- she has all of her nurse friends and fans here. I ran into at least three nurses who we've become close with through our ordeal (none of whom were actually assigned as her nurse today) who said some variation of, "I stopped in to play with Cora today," or, "I was cuddling Cora today!" With those beautiful eyes and those delicious chubs, she's quite the little celebrity around here.

The plan when we arrived was to aggressively work to get fluid off Cora's lungs, which basically meant putting her on IV medications. However when her initial lab work came back it showed that her electrolytes were low. Therefore the plan has been placed on hold while they replace her electrolytes. Hopefully within the next day or so the electrolytes will get back to normal and then we can go back to working on the lungs.  After getting the lungs situated the next step will be the cath, which will most likely be early next week. Cora never being one to offer a straightforward picture, I'm doubtful that it will yield some silver bullet problem that could be easily solved. But still I am hopeful that it will at least provide more understanding than we have today.

In the meantime Cora is on additional oxygen and still breathing hard. She seems bummed about it all.

Meanwhile Jason, Grammie and Papa and took Dominic and Cosette out to dinner and to see Monsters University. The thought of them sitting there eating popcorn and M&Ms makes me happy. 

Oh, and Cora is currently wearing pink and white striped, very fashionable little bloomers. And that makes me happy too.

God, on the fly

Blaaahhhhh......

Cora is back in the hospital tonight. I knew it. I am getting good at predicting these things, if nothing else.

It was clear that she was struggling this week. She seemed to get progressively worse with each day -- and even more so in the nights. She had a few times of reprieve but overall she wasn't happy this week.

The nights have been out of control. Usually beginning at 11 or 12 she starts coughing, gagging, crying, and thrashing around. She has started breathing harder and faster, and even I, a person with no medical training (but who arguably could apply for an honorary degree in nursing) could tell that her liver was more enlarged than it had ever been.

Jason took her in to see her primary cardiologist at UCSF this afternoon and he confirmed what we both knew. That Cora is yet again (or still, depending on how you look at it) struggling. For whatever reason, despite the last few hospital interventions, she hasn't been able to change her trajectory. Over time, she's just getting worse.

So this time they will give her some IV medications which are much more effective than the oral ones at home. They will also keep her in the hospital until they can do the heart catheterization. Hopefully that will reveal the reason for Cora's continued difficulties. At this point her problems most likely are either attributable to her chronic lung disease, or they are a result of an open hole that Cora still has in her heart. I'm just hoping to get to the bottom of the cause, because I'm a type A, and life always feels better when there is a plan.

As sad as I am that she is not under this roof tonight. I can accept it. Really, the only thing worse than her being in the hospital is her struggling or suffering. And I felt that she was both struggling and suffering the past few nights. Especially last night when nothing I did could help her breathe easier or rest at all, and when finally at 2:30am Jason capably took over and told me to go sleep on the couch for an hour before I had to get up for work.

We are both dead tired, and I guess you could say that god intervened.

Speaking of god, Dominic asked me tonight, "what is god?" I am a spiritual person and I do pray, but I've never been much of a public pray-er and I'm not very good at knowing when the right time is to tell your kids things. I'm sure I'm supposed to be actively teaching them things (what though? Reading? Greek mythology?) It's just too hard to know how to be a professional parent, so I figure my kids will just pick things up when the time is right. Keep it mellow. That's my motto for life, as well as for parenting.

Anyway, Dom asked about god tonight. As a slacker parent, I had not prepared an answer to this question. (And by the way, how the heck am I supposed to know anyway?) On the fly, I told him god is a loving thing in the air around us, all the time, that does nothing but protect us and care for us and squeeze us, wherever we are, all the time. That that same power is loving and protecting daddy and Cora, even though they're at the hospital tonight. Just like it's loving us here in our house.

"Oh," Dom said. "But why does the squeezing not hurt us?"

I explained that it was good squeezing. A very wonderful feeling. "You know when something really happy happens, and you feel so good that your heart feels very big? That's god."

"Like when we're all together?"

"Yep. Yes. That's it."

And the other thing that feels like god is Cora swimming. I don't know what it is about it, but when she doesn't feel well and when I don't feel well, I take her in the pool. I swear, she floats her pain away.

Yesterday we had the good sense to take Cora in the pool. And both seeing her, content in the water, and having had the good sense to take her swimming the day before another hospital stay, both feel like a bit of god's grace.

The memory is a happy thing that's keeping me going today.