It’s almost been one year. The time has both flown and been so saturated with emotion, that every hour has sometimes seemed like a slog. More than once, I thought ‘the time has come to say What Happened at the end.’ To tell the whole story of our final days with Izzy, as either a kind of memorial to her on the anniversary, or as a purging of the most awful memories. I imagined writing every detail, every not-so-beautiful moment of those days in the hospital; every medical reality that had to be endured.

But I never wrote What Happened, I see now, not only because I wasn’t ready, but because I now feel all of those terrible details won’t help me. Those memories are not going anywhere. And moreover, they shouldn’t. They can’t be purged but I don’t need to re-endure them. We survived them–Bill and I–and they are part of us now. To relay the ugliest parts would only put those images in your minds now, and I don’t want that for you either.

What I want is to help. I want anyone who reads our story to feel that there is hope for the grieving because there is. There is peace. Honor. Grace. Beauty. Those aspects of our experience I want to relay, because they are why we are surviving and why our eyes have been opened.

I wish there was another word to go with grief. Grief, to me, implies crying, tears and sorrow. Lying on the floor and wailing. Grief washes over a person and they stop and weep for the lost. And they should. We should. Let it come and let it pass. But the loss of a child leaves a mother or father with a hole in their soul that is permanent and hollow and heavy. But it doesn’t mean crying, or even sadness every minute. It’s something deeper than sadness. You carry it forever. Grief comes and goes in waves–sometimes terrible tsunamis–but the hollow feeling, even in lighter moments, persists.

And what I want to say is that instead of learning to live with it, or ignoring it at times, or keeping myself occupied to avoid it, I’m embracing it. I’m taking it all. This life. These experiences. “There is honor in having loved someone so much that their leaving breaks you.” Elizabeth Gilbert said that, and I fully believe it. And that broken-ness is the hollow-yet-heavy shadow that exists in me for not having Izzy here in her physical body anymore. I choose to embrace that honor and take it.

But what I do want anyone who’s interested in our story is to know that the syncronicities and little miracles we talked so much about in the days after her passing are real, and I want to share a few with you, because THAT is the true story of What Happened. And that is what makes that burden of carrying that hollowness a little bit easier.

The first and foremost is that Isabel died on the morning of June 20th, 2018, not four days later, June 24, as her death certificate states. The amazing firefighters, our close proximity to Stanford, and the incredible staff at that hospital is the reason we had those days in the hospital with her. Without diminishing one thing they did for us, the fact remains, she was already gone. They put her on the ECMO life-support machine because of her youth, I think, more than any other reason, because generally speaking, no one can survive two hours of CPR. The brain is simply deprived of oxygen for too long and there is no way to survive without severe deficits. If the person even regains consciousness at all. Which Izzy did not. The little reactions and signs I reported on Facebook were only the most basic of brain reactions in a body that was being kept alive by a machine. Izzy’s pulse never came back on its own, not one time in those two hours of violent chest compressions, and defibrillator shocks, and in no time thereafter.

Bill and I knew, in our heart of hearts, that she left us that morning.

That morning.

I was set to fly to Rome for a book signing. The night before, Izzy asked if she could sleep in our bed since she would miss me too much. I said yes–the best decision I had or will ever make–and because Talia didn’t want to sleep alone in their room, she and Bill camped out in the living room. Izzy lay in bed next to me, and I kissed her face and said, “I love you, baby.” And she said, “I love you too.”

At 5:30 or so in the morning, I woke to the sounds of her last breaths leaving her body, and I thank the gods, Izzy, everyone and everything in the universe, that she was lying next to me and not in her room where I would have thought she was merely snoring–if I’d heard her at all. I would not have known. We would have come to her bed to find her already gone. But she woke up me up because she was gone but she wanted us to have time. This, I know.

I cried for Bill to come into the room with the phone pressed to my ear as I called 911, his first words were, “Izzy, where are you? Where did you go? Come back.”

Under the direction of the 911 operator, he began chest compressions until the fireman arrived. They tried defibrillating her and I sensed the confusion that it just wasn’t working in someone so young. They tried and tried, and eventually carried her out to the ambulance in one fire-fighter’s arms while another ran by his side, still doing chest compressions. They couldn’t use a gurney because of the stair situation in our condo complex. I’ll never forget that image as long as I live. These panicked, stoic men, doing their best.

I rode with a police officer in his car, while Bill stayed with Talia. He would get her situated with a friend and join me at the hospital later. In the ER, I watched as firemen and then hospital staff performed violent chest compressions on Izzy, taking turns because their arms grew tired, desperate to push oxygen into her brain. Her cardiologist, Dr. Ceresnak, arrived and I clung to him, a palpable sense of “why isn’t her pulse coming back?” permeating the air. One nurse glanced at her watch and grimly shook her head. Finally, they decided to put her on life-support.

This involves surgically inserting tubes into the heart via the neck to allow a machine to pump the heart for her, while a respirator breathed for her. One doctor, Dr. Maeda, performed this while a team continued CPR on Izzy. I can’t even fathom the level of skill it took to do that, but I’m forever grateful to this genius from Japan who moved to the States and was in this hospital when we needed him, and accomplished that feat.

It took hours to perform that surgery. In that time, Izzy’s brain had almost no oxygen. Bill and I prepared ourselves for a life in which if her heart recovered, she would be faced with rehab and accommodations and needs that would break us. No more piano playing, songwriting, acting, singing, walking, eating, breathing… We readied ourselves for that possibility and each silently vowed to fight that battle for her if necessary. (I did all of my vowing in hospital bathrooms).

But it became more and more apparent, not only with each neurological visit or brain scan, that she wasn’t there. But we didn’t even need the scans to feel it. Anytime we had to leave her room in the ICU for whatever reason–for one of those scans, for instance–it was completely apparent upon our return how NOT THERE she was. A therapy dog was brought in. A musician sang to her. A very Catholic friend baptized her and became her Godfather in that moment, because why not? Love is love, in all ways. But through all that, Izzy never woke up, her heart never beat on its own, and other complications were setting in.

The violent CPR chest compressions caused a bleed in her lungs that made itself known on Day 3. Dr. Maeda and the team of doctors called us in for a meeting. The Meeting. The one we had been dreading yet–even in our almost constant state of dazed shock–knew was coming.

Dr. Maeda sat at the end of the table, his accent thick and his voice choked with repressed emotion. He told us that in order to stop the bleed, he’d have to perform full open-heart surgery–rib cage open and left open–in order to find the source. He said the chances of that helping her in the long run, never mind her surviving it, were very slim. Then he banged his fist on the table and cried, “But I will do it! If you ask me to do it, I will do it!”

There are so many kinds of love in the world, but they all boil down to the same basic love that all humans have if only they could set aside the idea of stranger-ness and see how we’re connected. I loved Dr. Maeda in that moment, so much, and still do. I love Dr. Kwaitkowski, and Dr. Ceresnak, and every nurse, every RT, every EMT, and the firefighters who actually showed up in our parking lot last week to do a drill and happened to run into Bill. They knew what happened. They knew she left us that morning, but no one stopped fighting for her.

And neither would we, had there been any sign, medical or otherwise, that Izzy was still there. But she wasn’t. And so we went outside to the Stanford garden with our angelic social worker, Ellen, and walked the labyrinth and talked and sought to ‘decide.’ But there was no decision to make. We went back in and told Dr. Maeda and his team we weren’t going to put her little body through that. We would let her go.

We then had two more days there in order to sort out the organ donor situation. (Izzy’s kidneys would eventually save a woman’s life in Arizona). And in those two days we had more time to plan, to talk, to make promises to each other that we would not break apart. That we would see the miracles in front of us.

One of them being a quote from Maya Angelou appeared on Bill’s phone on Day 3.

I am grateful to have been loved and to be loved now and to be able to love, because that liberates. Love liberates. It doesn’t just hold—that’s ego. Love liberates. It doesn’t bind. Love says, ‘I love you. I love you if you’re in China. I love you if you’re across town. I love you if you’re in Harlem. I love you. I would like to be near you. I’d like to have your arms around me. I’d like to hear your voice in my ear. But that’s not possible now, so I love you. Go.–Maya Angelou

I don’t know how or why but it came, telling us to let her go.

Or how in the hospital Izzy came to Bill in a vision of pure joy. ‘Spinning and whirling’ he said, like sparks of pure light. And how weeks later, a dear friend who has always been connected to spirit but who never knew Izzy, said she saw Bill at a neighbor’s to pick up Talia from a playdate, and had a sudden image of Izzy as pure light and joy, “spinning and whirling.” The exact same words.

Or how in the six months before Izzy passed, Bill began a search for answers to questions we weren’t even asking yet. And so we had a wealth of resources in our house to land on when the floor dropped out and had to navigate how to survive our child dying.

Or how four months before she died, I was reading one of those books Bill brought to us that wasn’t even about death, and began crying with joy. Like a mental breakdown of happiness. I told Bill, out of nowhere, “Izzy is perfect.” From that moment on, all of our natural parental frustrations with the kids disappeared, and we flowed nothing but pure love and affection to Izzy and Talia, no matter if they bickered or whined or anything. And we still don’t.

Or how in the months before she died, Izzy wrote a song called “I’m Leaving.” And another, in which the lyrics say in part, “don’t be sad when I’m gone.” Or how she completed her best performance as Lumiere in Beauty and the Beast. She graduated 5th grade and performed at the assembly. She completed everything she had set out to do. To stay was too hard on her heart. To feel the injustices of the world so deeply was too much. As if she knew she could do more from the other side.

Or how pieces of this experience have appeared in every single one of my books since 2014 not the least of which are the books in which I wrote of a man dying of a heart condition (before I knew what Izzy had) and how those who loved him survived full of love after. How it was worth every second of the pain, because it is.

Or how months later, after Izzy left, I was texting my sister-in-law about something trivial after having a terrible night of grief. I didn’t tell Stephanie what was going on with me but the next day I woke up to a text of hers that said Izzy came to her and told her to tell me not to be sad. To be happy and that she’s with me, always. An hour later, I walked the dog and a hummingbird landed on a plant that was like a clump of long grass and–not inches from where the dog was sniffing. The dog never acknowledged the bird’s presence, but that hummingbird landed on that plant and folded its wings and stared at me for a good ten seconds. I’ve never seen a hummingbird that was not beating its wings, never mind land on a branchless plant with a dog inches away. I knew it was Izzy. Not in the bird, maybe, but a sign.

There are more. So many more, but the most obvious to us, is the day in which Izzy chose to leave.

She was born on August 20th, Bill’s birthday. Her official due date was Aug 24th. She passed away on June 20th, my birthday. Her death certificate says June 24th. We petitioned to get it changed but they could not. And again, in no way do I mean to diminish all that Stanford did for us. They gave us time. They gave us the contemplation we needed in the midst of so much shock and pain. She was born on his birthday and died on mine. How much more of a sign did we need?

On Sunday, June 24th, was the last day. Bill left the hospital the night before to be with Talia for one night. They said they’d shut the machines off around 9pm Sunday night. So Saturday night he left. I stayed. I slept in the family room down the hall, and on Sunday morning, I came into Izzy’s room and was struck immediately and again with how not in her body she was. A tremendous peace flooded me and lasted all day. I had a few hours before Bill returned, and spent it talking to the nurses and doctors and generally feeling that strange mix of absolute peace for doing the right thing, underneath the complete shock and horror that it had come to this.

That night, after Izzy’s friends and close parent friends came to visit (not in the room; only a few adults came in the room and never Talia; we didn’t want her last memory of Izzy to be as she was in that ICU, but as she had been) the time had come. That walk from the ICU to the OR waiting area where a team of doctors was waiting out of sight for the organ donation, was the worst, most horrifying, most surreal of my life. I held Bill’s hand in one of mine, Dr. Ceresnak’s in the other, as Dr. K walked with us, and the team of 12 people it took to move the ECMO and bed. I nearly fainted.

In the room, we sat holding her hand, as the team prepped for what felt like forever. A tear slid out from under Izzy’s closed eyes–a body reaction that had happened before, but this one I wanted. No one saw it but me and I grabbed it and it sank into the skin of my closed fist, absorbed into me forever.

When the machine was disconnected, we stood up, because you stand up in that moment. You stand up for her, and for yourself, to honor the body that held such a soul as Izzy’s.

And without the machine, her heart stopped almost at once. Peaceful. Never once did she suffer. Not that night–she was already gone–and not the morning in the bed with me. She went to sleep and her heart stopped and she left. All the rest of it was for us. Even as bad as it was, some of what we had to see in the hospital, the TIME was for us. Izzy gave us that.

I strongly feel/believe/know that Izzy and I and Bill had a pact before we came into this life. (And if this is where I lose some of you, I understand. Our journeys are different and it might be that some can’t hear this; and that’s okay.) But I know that I’ve known Izzy before. Even before she passed, I would look at her and say, “Yep, that’s Izzy.” She was ingrained in my soul, whereas Talia is brand new. I looked at her (and still do) and think “Where did you come from?” (I’ve asked her this a couple of times and she always, without fail, says, “Space.”)

Talia was/is a being I constantly marvel at, where Isabel has always been with me. My Best Buddy, now and forever. And if our purpose for being here is to grow as a soul, to take all of this life, its beauty and pain–unimaginable pain–then Izzy, Bill and I, in some nebulous time before, agreed that these were the lessons we were going to learn. That our eyes were going to be opened to what life’s purpose is, to what the true meaning of love is, to continue to seek answers, to know that all of this is impermanent and that what really matters cannot be found in ANY material thing. That loving one another is more important than being right. That we are not our thoughts, but are that which observes the thoughts. Our souls are not the flesh and blood we wear, for all that shall perish. We are forever, and when death opens your eyes to what is real, you never want to close them again. To do so, would be to dishonor her. She went first. We must follow our own paths to the end too.

Izzy taught us all of that. Her gifts to us. And our job is not to overthrow the grief and pretend like it doesn’t hurt like a motherf*cker, but to take that pain and make something of it. To help. To learn. To grow.

There is grief. There are times of crying (many, many) but if you look at me and think “she’s doing pretty good” this is why. ALL of this is why. And it’s not compartmentalizing, or rationalizing, or clinging to woo-woo beliefs in a desperate attempt to find meaning in all of this. I’ve been through all of those. I’ve put myself through that guilt of being “too okay.” But the inherent TRUTH of what we experienced is still there, and the truth cannot be rationalized or compartmentalized. You know it when you feel it. It’s not even a thought. That nattery voice in my head said a hundred times “It’s all coincidences. You’re in pain and don’t want to be.” To that I say, “No more.” The guilt. The shame. The self-consciousness of How Devastated Do I Need to Appear in Public? Or on Facebook. “Does that happy emoji indicate to them i’m okay? Am I sad enough? How can I be writing right now? They have to see how much I hurt, always.”

I’m done with torturing myself with that, and yes, many times I overdid it. I traveled when I shouldn’t have. I’ve had meltdowns. Breakdowns. The 20% of me you see on Facebook is not the 80% you don’t see because I never want to bombard people with grief. It’s there. And when it’s not, that hollow, no-word-invented-yet feeling is. Always. I don’t have to prove it, I don’t have to wear it as an identity, and I don’t have to thrust it on my dear friends and readers and followers on FB who have helped me survive this year more than I can ever express.

But what I always wanted, I think, was to post only that which might help. That TRUTH that we feel; that peace. It’s real. And it’s a reality keeps bleeding through so that when I thought I’d eventually write a blood-and-guts What Happened post, I’d include every horrifying detail. But the fact–the TRUTH–is that there was far more beauty in this experience than horror. And that you don’t need someone close to you to die to find it. All of the awakenings we felt our not ours alone. They are there for anyone to see, if they only look. Death just has a natural way of leapfrogging over so much static and dropping you straight into the heart of what is really real.

And the ONLY thing that is real, is love.

I used to think our situation is unique. That not everyone who’s lost someone had the blessings we do. But I’m learning in our quest to know, that our experience isn’t all that unique. That the same beauty, peace, and sense of fate is within every experience. This society will tell you how horrible death is. And it is. I’m not a superhuman (or a nutjob) who wouldn’t trade everything to have Izzy back for even a minute. But what society doesn’t tell us about death is louder than the pain. This I promise. You just have to wipe away the tears to see the signs.

And one of the signposts Izzy gave us is in Aug 20-June 20.

All this year, I thought my birthday was going to be one of pain, and horrible memories, and more pain. And it still might. But I can’t imagine how worse it would hurt if she passed on June 19. Or the 21. Or some random day that meant nothing. Underneath the enormous pain of her passing is the honor that she chose me. She chose me to say and hear the last words, the most important words: I love you. She chose me to lie next to her as she left her body, she chose my birthday so that I would know I was just as special to her as her Dad is to her. We did this together, and I am not going to recoil from that honor, no matter how that gulf of hollowness for missing her is there. I’ll carry it proudly. I’m going to stand up for her, for this life, because the grief is proof that she was here.

And if you’re thinking, “How does Talia fit into all of this?” Talia’s gifts and talents and hilarious, sweet, feisty personality are on full display. Our love for her shines on her and she is shining right back. Thanks to the lessons Izzy’s passing has taught us, we are raising Talia with open eyes. Open to her as her own being, open to all of her gifts that are so different from Izzy’s but still just as potent and real. And to never, ever take one second of her for granted.

I am so grateful to Isabel for that. Unspeakably grateful for what she has given us. The truth that death is not an end. Never an end. But is, as Izzy herself wrote, “the beginning of the next great adventure.”

Much love to you all.

Jen

#grieving #grievingparents #childloss #death #hopeandlove