playing with fire

Lu had a miscarriage recently.  We were shocked and amazed that she was pregnant, but the glow didn't last. Within days of seeing that second line it became clear this pregnancy would not be continuing.  

I don't know how much more heartache this family can take.  

We are trying for life and siblings and family.  We are striving against time, against history, against death, against memory.  I want Zeph to have a brother, but he already didn't have one before he was born.  I want our family to be a crew, but we are missing our Silas and we don't know if we will ever have more.

I love my two brothers and I loved growing up in our family of five.  It was crazy, beautiful, loving chaos.  It was always an event, every single day.  Somehow my parents spread their deep and abiding love all over our tiny, growing souls.  Despite illness and anger and sadness for my mother's MS, they imparted a profound love for laughter, for friendship, for family and for fun.  I always envisioned having a two or three kids, but that is looking less and less likely and I'm not sure how much harder we should push.  We have Zeph and he is amazing.

Zeph is my pure joy.  Despite poops and crazy baby toddler behaviors and utter two-year-old defiance, I can only see and think and feel how lucky I am that this being is in our life.  He should have an older brother.  I wish he had a younger sibling of any kind at all.  I want all of that, but I am terrified to try.  We are old.  The odds are not in our favor.  We barely handled a miscarriage at 7 weeks.  What happens at 20, at 30, at 40?  We have traveled the dark path of death and I can never go back.  I want to have everything for my son, but I know too much to have any illusions about what can happen.

And lastly, of course, are the 'positive outlook' people that would call me out for not thinking positively and not hoping for the best.  But I just don't give a fuck about any of that anymore.  Haven't for a while. What I think, what I hope for, what I want, it has absolutely no bearing on what biologically happens in my wife's uterus. Some may believe otherwise, and if it helps them that's fantastic but it just doesn't work for me.

I can't go back to the vortex ever again.  I can't touch that deep dark deathness where Silas went.  And yet I will. We all will.  The only path forward is to try everything and to know that only nothing awaits.  My parents will die. People I know and love will die.  But I can't lose another child, not ever again.  So to keep trying is to play with fire, and I know I can't handle the pain if we fail.

The spring is sneaking into the afternoon sun.  The daylight has been saved.  We get to collect a little more of that light late in the day when it's time to walk off work's sour funk and I wandered slowly with my son to the park today.  I didn't hear Silas then.  I didn't think about what Zeph is missing, who should have been leading the way.  I was so fully engaged in the beautiful moments of his experience that I didn't imagine anything else.  

Yet, when we check every month to see if he'll have a sibling I am suddenly pulled back into that terrible world of hope that resolves into failure.  The deep well of sadness that always lives in my heart flows again, to all my limbs and heart and mind, drowning me anew.

~~~~~~~~~~~~~~~~

Have you suffered subsequent losses after losing your child?  How difficult or easy was it to try to have more children after your loss?  Did both partners share the same outlook or was one more or less adamant, hopeful, afraid, etc?  How does your family compare to the one you grew up in?

the scbu legacy

There is a boy on my lap, ten months old, and he's been gasping for breath all evening and the antibiotics that should be helping are making a red rash creep up his cheeks. It's getting harder to breathe now and I'm looking at him and I know what the doctor - kind, understanding - is going to say next.

"I think we need to admit him."

I'm all on my own with a million screaming voices in my head and I don't know how to help him - or me - and a tear splashes down on his face.

I'm always raining tears on my boys.

And then she says:

"He will be okay."

Beat. Follows Beat. Follows Beat.

I look up and I can feel the look that I give her.

"I've been told that before."

Flatly.

Don't tell me this will be okay. You know nothing. You people can't save my boys. I don't believe you.

***

There is a boy on his lap, ten days old, and he's arching and gasping and the room has stilled to a horror struck silence. He's been stable - doing better -  but suddenly the world has dissolved and a hiccuping gulp for air has become a desperate grapple for life and he's suddenly all ours, our responsibility and I can see that he's dying and it's going to be unbearable, painful, the cruelest and worst possible ending.

The antibiotics that should be saving him are doing nothing and no one knows why.

I know what she's going to say next. Kind, understanding.

"I think it's time to make a decision. If you wait, there won't be a decision to make."

Beep. Follows Beep. Follows Beep.

Damn monitors. Damn wires. Damn tubes that came between us and didn't save him. I don't know what to do to help him. Or me.

And then I do.

I look up and I can feel the look that I give her.

"Do it. One last chance. Only one. Give him till tomorrow to try to live."

Don't tell me this will be okay. I've been telling you for ten days that this won't be okay. And you can't save him. You don't know why, but you can't save him.

And I'm all alone, all night, with a boy who said no to his one last chance and who chose to give up on breathing and chose to reject the help that all the medics who wanted to save him offered and who left me, with a million voices screaming in my head, with the knowledge that I let him go because that was all the mothering I could give him. That was all the kindness I could offer. That was for the best, for him, for all of us.

***

We don't talk about the SCBU days. We don't talk about how the rhythmic beep of a monitor still sends us into silent meltdown. We don't talk about how each illness, erroneous blood test, each new health problem for our girls and rainbow boy forces us to silently confront the reality that our child died and when we needed them, the doctors couldn't save him. Didn't know. Can do so many brilliant things but couldn't save a little boy who lacked the fight to live. We don't talk about how one doctor said he would do well, that 24 hours later we crashed as another spelt out what 'do well' might mean for a boy who didn't want to suck. We don't talk about the peak as he opened his eyes and began to respond or the pit of despair that hauled us down as something inexplicable tore him away from us again. When our subsequent child is - repeatedly - admitted to hospital with breathing problems (and lives, I grant you) I go alone to care for him. Alone beats the companionship in terror of the SCBU parent bedside journey.

Just waiting for the balloon to go up. Just waiting for the hammer to fall.

Three years on, we do not let ourselves look at Freddie's 11 days and acknowledge how easily it could all happen again. And that means we do not look at his life at all.

***

They couldn't save him. They didn't know. And so how can we ever believe  in "it will be okay" ever again?

How has the loss of your child changed your feelings to illness since? How has it altered your parenting to subsequent or other children? Are you stronger or weaker in crisis since? Do you see death lurking around every corner or do you thumb your nose at it? And if you experienced a SCBU (NICU) journey, what is it's legacy in your life since?

vacation

photo by Garry - www.visionandimagination.com

I walked on the black-sanded beach by myself, waiting to come across a large carcass of a whale or ship, something broken and empty, like me. Here it is, I would think, the perfect metaphor for my grief. I would climb it, I imagined, examine it, and take a piece of it home. "You didn't die in vain," I would whisper. "I will remember you." And in that moment, the inextricable link between all creatures would be known to me. Nothing like that happened.

I had never traveled sad before.

After my daughter's death, I fantasized about moving away to somewhere very warm and beautiful. Life is too short to stick around New Jersey. Or maybe this time, when we didn't have a newborn to care for or money to be spent on her, was just the perfect occasion for us to travel the world for a while. We could leave this terrible place where babies are stillborn and you can't make a left turn. Eight months after my daughter died, we packed up our grief and headed to my mother's country, Panama, for ten days.

Some days, I was ecstatic, begging to travel long distances through the country for the possible glimpse of a sloth, or totally jazzed to hit the fisherman's beach to bargain in Spanish for some fresh catch. I bounced on the balls of my feet, clapping my hands like a motivational speaker. "Come on, people, those monkeys aren't throwing poop at themselves. We've got a jungle to trek." Other days, I could barely muster a walk out of the bedroom. I woke up several times each  night thinking about the dog or my father, wracked with guilt and overwhelming anxiety. Something. Was. Wrong.

The other thoughts in those hours of the night were how far away this country is from my daughter's ashes. Lucy's death seemed so small and long ago, like a dot I saw on the tarmac of Newark as our plane arched toward Central America. Oh, but I packed her death. It ached in my every joint, in every inch of my being. Some days, every activity seemed rather pointless or overwhelming or both. "Meh. I'd rather be sleeping."  And the family would leave as I read books and wept uncontrollably.

And I remained cold. Eight degrees off the equator, I shivered in the sun. I wore a sweater most nights, sometimes during the day. I couldn't get warm. It had been like this since Lucy died, not being able to feel warmth.  I carried a bit of winter solstice in my body now.

+++

I cried during very chaotic turbulence, because what I didn't dare speak before my trip or during, was that I was convinced I was not coming home from Central America. Riptide. Hanta virus. Panamanian drivers. Mud slide. Pool accident. Infected finger. Lightning. Freak machete accident. The ways in which one can die on a vacation are surprisingly varied, interesting and around every corner. I sent emails to all my people, "I will always love you." The pilot actually came on the loud speaker on our return flight to say that we may have to make an "emergency fuel landing." This is it, I thought. I was the one with tears in my eyes and hand raised. "Uh, is that emergency landing because we have no fuel? Or is that a landing to get fuel? Could you just clarify the emergency part?"

Once you are on the shitty end of statistics, that small stretch of number is your homeland where no death scenario is too far-fetched, wild, or out of the realm of possibility. I even imagined different ways to be imprisoned in a Panamanian jail for being at the wrong place at the wrong time during a drive on a desolate piece of highway.  And my living daughter seemed a step away from death too. Sometimes I just cried, not because I saw Beatrice's imminent drowning, but because I wanted Lucy to be in the pool with her sister and her father, bouncing and splashing. I hate seeing Beatrice without her sister. My husband without his daughter. The world without a little giggling girl.

+++

There was part of me that imagined this trip as something healing, something different than it was. I tried not to build it up or imagine it being a vacation from my grief. But I admit part of me felt like maybe a change of scenery would change my grief. Just a respite from the exhausting heavy weight of it. Maybe like Atlas passing the world to Heracles for a brief minute just to stretch the shoulders. How could I not be happy in such a beautiful place? But the pure exhausting nature of grief amplified the ugliness inside me and the beauty of everything else. Lush green and grief. Moss and anxiety. I looked out of our room onto the great expanse of the Pacific Ocean, watching the sun set, and still, I was so fucking sad. It's easier to be sad in New Jersey. You are supposed to be sad in New Jersey. This was just another shitty day in paradise.

+++

When we walked in our house, I walked straight to her urn. Why hadn't I taken it with us? I stared at it for fifteen uninterrupted minutes, I missed home.  I missed her (which had nothing to do with home.) I missed grieving her. Home represented non-judgment. No expectations. Just grief in whatever form it came. And yet the vacation was beautiful, dare I say, worth it. I listened to the story I told to other people about the vacation--epic hikes through the jungle, watching twenty hummingbirds fly around my daughter, lying on the beach, rolling a cigar in a factory with my cousin,  spotting a sloth in the jungle, or discovering a moss-covered wall and waterfall.  Those were amazing moments. The truth is when I spoke of my amazing days before, they have really always been an amazing moment or two enveloped by the mundane. After my daughter died,  they became amazing moments enveloped by the grief. And they are, in their own way, sometimes happier. Maybe the juxtaposition with grief makes them happier.

If someone asked me many years ago to describe how both my best and worst moment could be wrapped up together, I couldn't have imagined what that could possibly be. Then I birthed Lucy, knowing she was dead, both so incredibly tragic and beautiful. Her birth, a peaceful moment of agony. And so this first vacation after her death, an agonized moment of peace.

Have you traveled, or been on holiday, since the death of your baby? What was the experience like? How has grief changed your experience of travel? Or how has travel changed your grief?