Acute

Acute

The loving and missing of my son will never get “better.” It’s easier to live with these days, chronic, not acute. Integrated, part of me, part of the fabric of my life and my family. As eight demonstrated, there are flareups. Which is ok. This is not a condition from which I ever hoped to “recover.” Because after all, we don’t stop loving someone just because they die.

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encounters with normal

When I think about you Zachary, my heart pounds hard. It feels like prisoners are pounding on the walls and trying to break out. If you were here we would get to see your foot in person not in a mold. I wonder if you would like spice. I like spices so I think you would too. I love you. It occurs to me that many kids were watching Sunday morning cartoons with their siblings while C.T. was pining for his dead baby brother. How do you cope with normality after the loss of your child(ren)? 

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here (again)

Twice-bereaved mother Gretchen, of Lost: Boys and Bearings, is our guest writer today.  After her first son B.W. was stillborn in 2006, life was shattered and then slowly and arduously rebuilt.  In January of 2014, Gretchen's third son Zachary was born prematurely but almost fully expected to survive and thrive.  On Zachary's eighth day of life, he contracted a bacterial infection in the NICU environment.  At fourteen days old, after suffering tremendously and having graced his family with more love than they ever imagined, Zachary died. It is our distinct pleasure to have Gretchen writing at Glow today.

It is strange and surreal and brutal to be here again. Now, after having lost our son Zachary, on top of having lost our son B.W. more than seven years previous, here is at once eerily familiar and completely foreign.  

I remember this flavor of devastation so intimately. The raw, desperate longing for my son. The instantaneous shattering of all that was, of long-held, treasured beliefs, of an entire imagined future. The unmistakable reinforcement that the universe will dole out some horrific shit, with no regard for merit or implication. The deep, aching sorrow, the guilt, the anger, the inability to make sense of any of it. And over the course of several years, the clawing back, the attempt to create a new meaningful life despite the tremendous and permanent loss.      

At the same time, I don’t recognize at all where I am now. In the aftermath of watching Zachary unexpectedly suffer and die, the devastation on top of seven-year-old, scabbed-over devastation, the absurdity of what I’m living now, is a nearly indescribable low. Two of my three children are dead.  Just as I had learned to really embrace life again, Zachary died. I am doubled down with grief, mocked and shamed at having hoped again. The grief work I did to assimilate B.W.’s death into my life feels absolutely irrelevant. Wasted. The patches I created and tended to in those years after B.W.’s death don’t even begin to cover the newly broken and reinjured places. 

I don’t think I can (or dare to) muster the same resilience this time, after Zachary has died. What’s the point when I fully expect to be violently pummeled again? The loss of one child felt random, but I find that I can’t relate to the concept of randomness anymore. The loss of my two children, to two completely different set of circumstances, no longer feels random. I glance around in terror now, paranoid and panicked about a target on my back or on the backs of my husband or living son.   

I can’t fathom who I am, can’t imagine what my future looks like, anymore. What I used to think of as my after—the me who emerged in the years after B.W.’s death—now looks as unfamiliar as my before looked, just one year ago when Zachary was still alive.    

*****

Every Tuesday, my living son C.T., comes home from school to report who will be the next Top Banana in his first grade class. The name is drawn randomly out of a bowl and the selected student, the Top Banana, is to prepare a poster about himself, his family, and share it with the class the following week. This is not an unfamiliar exercise for us, having participated in a variation of the idea in both kindergarten and preschool. Preparing for it has never been the effortless, mostly fun activity that I assume it is for most other kids and parents. Nonetheless, we have always found a way to incorporate B.W. into C.T.’s poster and into his somewhat rehearsed comments about his family. 

Before Zachary died, C.T. would say that there was a brother he never knew who came before him. That B.W. was a loved and cherished brother and family member, even though he was dead. He would mention one of the special things we do in B.W.’s memory each year. He would share how we light a candle for him every night at dinner. It was never easy, never painless, and always a bit anxiety-inducing for the three of us. But, each year up until this one, we walked away from the experience with a bittersweet sigh of relief, satisfied that C.T. was able to share honestly about his family, and this one sad thing in his life.

I just cannot fathom how we will do it this year when C.T. is chosen as the Top Banana. As open and innocent and curious as children tend to be, there is no way we can feasibly pretty this up for presentation. Not anymore. How will C.T. get up in front of his classmates and explain that he is now flanked by dead brothers? Only dead brothers. After watching Zachary suffer and die this year, his two week-old brother, his only living sibling, yanked from his life so cruelly—really, HOW will we paint an acceptably positive picture of this, for C.T. to share with his class? 

After Zachary died, C.T. has said how sad and angry he feels to hear his classmates talk about their living siblings. He knows what a massive mockery it is to be here, to have lost Zachary too.

Is your grief reminiscent of, or compounded by, other devastating blows in your life?  Where do you find yourself in your grief journey?  How do your living children cope, when sharing about life/family is required?  

The train brother and sister

This post is about my older living child. If you are feeling sensitive about others' living children, please skip this.

 

I am a boy. She is a girl.

I am big. She is small.

I am her brother. She is my sister.

I am the Metra. She is the El.

We were three. Now we are four.

Gender. Stature. Numbers. Opposites, new formations, favorite things, references. The unequivocal, irreversible way a three-year-old’s awareness of self was cemented, and his knowledge of the world expanded, as we announced to him gently about his unborn little sister.

Days later, we stuck two little Lego figurines – that of a little boy and a little girl – to a yellow Lego platform. The boy wore a hat, the girl had pigtails. They were my little son and my littler daughter, and we were very proud of our favorite ‘sculpture’. As we were fulfilled with our little children.

The Lego figurines still stand on my dresser. My children’s Lego avatars are together there, close to each other, on the same plane, in the same world. And around them plays a little boy, alone, his eyes not even daring to look at the figurines or claim them anymore. Now he calls himself “the boy who doesn’t have a girl.” Now he doesn’t want to grow up, turning his head side to side whenever someone calls him a ‘big boy.’ But even now, irreversibly, in his beautifully numbered world, we are four. When I burst out crying because he says that he always thought she was going to come out of my tummy and play with him, but she left without playing, he instantly assures me from the backseat, “Don’t cry Maani. I know she is always with me.”

Where do I begin this story of love, who do I tell about them? About a little boy and his undying love for his dead sister? What should this story be about? Should it talk about the truncated promise of camaraderie and companionship? Should it talk about love, pure and strong, that he poured from his heart? Yes, maybe. Maybe this story is about all of that. Yet, along the way, it becomes a murky tale of destruction, betrayal, abandonment, of meaningless loss. This story is about unfulfillment, of breaking apart, of having all this love but not having the one to give it to.

And then, this story is about a journey. Of a train brother and his train sister, running on parallel tracks. Never to meet again, never able to touch or hold hands. But always running together.

We rage on, angry, livid, that this happened to him, that our baby is having to unlearn all that he learned, and walk backwards at a time when the only road for him should be the one ahead. We are heartbroken that he was made to lead, and then left alone midway without a sense of direction. We watch helplessly as he eyes friends’ siblings longingly, coming home to tell me someone’s ‘baby is growing teeth,’ or another’s ‘baby is walking and falling down.’ Then we talk about what his sister would have been. Would. Have. Been. You would think it is too much for a little boy to imagine. It is.

But he smiles as he imagines “Bonu walking and falling down, walking and falling down.” He looks at my lost eyes, and smiles wider. I wonder if he would have smiled like this if she were here, walking and falling down. She. Were. Here. You would think it is too much for a mother to imagine. It is.

Then we travel together to what-if-land, stretching our imagination as far as it would go. Yet, it never stretches to reality, bouncing back like a big colorless knotty yo-yo. The imagined shapeless vision lays bare a very defined and empty reality. So we let our minds come back, shaken, frozen, broken. We let our imagination break away and freeze up, little by little, as we wander back to what-is-land, still smiling, and never looking away from each other’s eyes.

Those who know and love Aahir often tell me how he has had to grow up in the past year. That is partly true. Aahir, who is my knight in 5T clothes, grew up too much, too soon, long before Raahi died. He watched his Maani cry the day Baba left for Columbus, and there were still three toothbrushes in the caddy. They hugged and talked about her fears for Bonu, and he watched her make countless trips to the hospital alone. He grew up into a sheltering tree the morning he found his mother scared and needing to go to the hospital, since Bonu appeared to be coming that day. Sleepy-eyed, yet wide alert, he offered to wipe the spilled milk at breakfast, and again they worked as a team, he the fearless comrade, hurriedly putting on his shirt, she the tireless fighter, getting his bag together. When he said that he loves Maani, Baba and Bonu, as Maani buckled him into his carseat to go to his school, and then to the hospital, her eyes were full and her mental reserves empty. She desperately hung on to his faith, as hers was gone. He was three years old.

Those three-year-old hands would pull Raahi’s rolling bassinet to a private room we were finally allowed to bring her to, after her second surgery. His toes would get hurt every day, as the wheels rolled over them. He pulled on, never looking away from the bassinet. At the hospital, he stayed way past his bedtime, his eyes fixated on his little sister. He often fell asleep on the couch, waking again when it was time to go, his sleepy fingers pulling the bassinet back to the hospital nursery. All of the nurses knew Raahi’s big brother. All of them said he was the most caring big brother a little sister could ever have. When we would visit her by ourselves, they would all ask for my “big helper.” They didn’t know that he was less a helper and more a sustainer.

His “Big Brother” shirt hung in his closet, waiting for the day he would bring her home. He wore it for the first and only time, on the morning of July 15, 2013, as he danced around, readying his trains to welcome his baby sister into his home. He pulled at the “standy,” the feeding bag pole, at the hotel and the airport during our move, and ran ahead of us, alerting everyone, “Watch out, watch out! My little sister is coming!”

In the early morning eight days later, all he could do was scream. “Don’t hurt my Bonu Baba!” as a distraught Som gave CPR to an unresponsive Raahi. “I don’t want to go Ma!” as I pushed him into the neighboring room in the hotel. I could hear him screaming from behind the closed door, in there with strangers, as a war was raging outside. My comrade, my warrior son.

After we brought him back from a friend’s house that evening, he was quiet. He didn’t ask any question about his missing sister and the missing swing he had put together with Baba two days back. He lay next to me, ears perched like a wounded deer, sometimes holding my arm, often curling closer. He listened intently over the pouring waters as I sobbed in the bathroom. “Maani is crying,” he would alert everyone.

In the following days and weeks, Aahir got to know that his sister had “flown away,” and that he was never going to see her again. He remembered the little box in his chest, which housed the trains in Evanston and Tiki Mashi (my friend Katie), wondering if Bonu will be living there from now on. I had told him that everything and everyone we love live in a little box in our chest, and we carry them everywhere, when he was heartbroken at having to leave the Metra, the El, and Tiki Mashi back in Evanston. And I had said that the trains are going with him. “The Metra is Aahir, as it is big, and takes serious, heavy steps. The little colorful El Train in Raahi’s favorite purple, the color of my university, is Raahi herself. It flits by next to the Metra, hurrying along, running fast, just like she will soon!”  Aahir loved to think of himself and Raahi as the train brother and sister, and from then on, he would often talk about the many journeys they would take us on, and how he would always run ahead of her, showing her the way.

We didn’t know that the littlest train would outrun us all in four days.

A week after Raahi left, Aahir asked me, “Has she gone on to her next station Maani? Why can’t the Metra go there?”

I ask myself that question every day, and try to understand it. Was this earth one of my little explorer’s many sojourns, was her brother her fellow traveler only for this one short journey? Did she know how much we loved being on this journey with her? Has she gone on to her next station? Is she saving us all a seat on her train?

I don’t know. I know that right now, we’re on the magical Metra. We tell him every day how much we love riding with him. We watch every day as he gazes into space, still looking and wishing for his colorful little El train to run by his side, and the emptiness, the meaninglessness of this drive clouds his eyes. Then he smiles back at us, and takes us on a spectacular journey, holding my hands tight, leaning on his father. Showing us what lies ahead, and what comes along the way.

We wave the flag, clear our throats, and blow the whistle for the train brother and sister.

 

How have your living children responded to their loss(es)? Is there any special imagery/story you have created or found that helps them address the absence of their sibling(s)? What have you, as parents, learned about them from the way they are growing up with and despite loss(es)?

sorry

It's hard to write about grief at four years out. Hard to know what to write here.

I want to tell you that you will never forget your baby.

I want to tell you that you will find a way to move on, grow about the pain.

I want to be the beacon of hope ahead of you, the woman with the life that has not collapsed around the dark matter of the dying star; that I was not sucked in and lost, heavy as the universe and destroyed in a hopeless inward swirling soup of moulten grief.

I want to tell you that you won't forget, that cosmic clutter and home grown atoms seared themselves into your soul and cannot be unwritten.

It feels wrong to write of present grief here. It feels wrong to write of recovery. It feels wrong to be either - healed or unhealed.

I missed my slot here last month. Almost missed it this month.

Grief hauled at me, made me unreliable. I chose to fail to prove that grief had me in its grip and prove that I had outrun it. But the truth is I couldn't feel it. I was numb. No words came. To write badly is the ultimate betrayal of my boy.

I'm held back and pushed forward by grief, by loss, by the bundle of boy in the paper flat pictures, the boy I grew quite perfectly who couldn't live without tube and wire.

You might imagine that pulled in all directions is unfathomable pain but it seems to bring nothing but inertia and dulled senses.

You don't need me, I told myself, because I am both then and now and neither is helpful. At four years out grief absorbed is of no more use than grief worn smeared upon my person and slathered, unwelcome, on every interaction.

Do you want to know that grief is just as painful 4 years on? Do you want to know that 4 years on I cry most often because his loss is so familiar that somedays I do not think of him at all?

Do you want to know you will forget? Do you want to know you never will?

That is my apology. Grief is endless and full of ends. Grief is circular, linear, long and short, impossible and easy, ever present and constantly receeding.

I'm sorry I wasn't here.

***

This morning my living son, born after, brought me Freddie's picture. We don't speak of him here. We are not a family of vivid gesture and outward remembrance. His photos live in my room and nowhere else. I have not wanted to make this youngest child one growing in the shadow of loss. I've never spoke of Freddie to him.

He asked us who the baby was, seemed to know that this was a baby who had not become a person he could place. And then, with uncanny understanding, he gestured to my candle shelf, to the collection of trinkets and gifts I have bought his brother.

"Baby Freddie all gone," he said.

Yes.

He's all gone.

No fine words can alter that.

4 years or not, it feels a giant of a thing to understand.

I don't think it is ever going to change.

What do you hope for as the days turn to weeks and the weeks turn to years? Do you have a sense of the resting place you grief should have? Or, how do you accommodate your lost baby or babies in your family? And how do you cope when others from inside or outside your immediate family, step outside your coping parameters?

the fourteenth again

Jen’s second daughter Anja was stillborn in January 2012. Anja has an older sister, E, and a baby brother, M. Jen wrote this on the 22-month anniversary of Anja’s death. She blogs at March is for Daffodils, where this post first appeared. We are so grateful Jen is here at Glow today as a guest writer.

 

This morning on the walk to kindergarten, E and I talked about how we would buy flowers after school, flowers for Anja on the 14th.

‘Anja is an angel, Mommy,’ E said, full of the authority of a nearly-five-year-old going-to-schooler.

‘Do you think so, sweetie?’ I asked, non-committally.

‘I think so. But, actually, Mommy what is an angel exactly?’

‘Well, some people believe that there is a place called Heaven, which is where you live after you die, and when you are there, you are an angel,’ I explained.

‘Do you believe that Mommy?' 

‘I believe that Anja’s spirit has gone into all the living things,’ I said. ‘I believe that she is in all the beautiful things we see around us.’ (Do I? Do I?)

E thinks about this for a while, smiling. Then she looks up at me and says, ‘Mommy, I really hope Anja is not a zombie.’

Christ, kid, what are they teaching you at school?

‘She’s not a zombie, love. I know that for sure.’

‘How do you know?’ E is genuinely worried.

‘Because zombies are just a story. Some grownups like to tell stories about things that scare them, but they’re not real.’

‘OK, Mommy.’ We hold hands and walk down the tree-lined block. At the corner, we run into a little boy from her class and his mother and baby sister. E and Z start talking excitedly to each other. For some reason, the topic of zombies comes up again, and it turns out there is some movie character(?) zombie who is funny(??) and can talk to dead people(???). E and Z start chanting, ‘I can talk to dead people. I can talk to dead people.’ Z’s mom smiles at the zaniness of children; I try not to grimace. My poor kid. She wishes she could talk to dead people; she knows death in a way that it is obvious very few of her peers do. ‘I know, Z,’ she says, ‘let’s go to a place where people get dead and we can talk to them.’ I wonder what she would say? I wonder where she thinks that place is? I wonder how her nearly-five-year-old mind reconciles the real death she has experienced and this fascination with death that so many of her friends are exploring.

We go into her classroom, hang up her coat and switch her rubber boots for indoor shoes. The classroom is cheerful and noisy; her teacher is happy to see her. Every morning, for the first fifteen minutes of the day, families are welcome to stay and participate in what the teacher calls ‘Noisy Reading.’ I love this time of day. We find a cozy spot and E picks out a book called ‘Chestnut Dreams.’ I open the book and start reading… Anya. The little girl in the book’s name is Anya and she has curly chestnut hair and green eyes and E looks at me in wonder. ‘Her name is Anya. Maybe that is my baby sister. That is what she looked like if she didn’t get dead.’ We read the story. I say the name Anya over and over and over again and it feels good. To have an excuse. To use the name without worrying that I will make someone uncomfortable, without being made to feel morbid or strange.

The special helper rings the book bell and it is time to put the books away and say goodbye. E says ‘hi’ to her friend, I, who is absorbed in saying goodbye to her mother and doesn’t respond. There is a flash of hurt in E’s eyes, but she runs over to another friend, D, and says, ‘D, do you want to sit next to me?’ D crosses her arms over her chest, her face furious, and yells in E’s face, ‘No!’ That is it for E; she comes back to me, her face crumpling and reddening. She buries her head in my lap and sobs.

And I wonder, as I always do, how much of it is what we see on the surface – rejection by friends; the start of a busy day – and how much of it is what she knows and keeps secret when she is out in her world – the death of her sister, the sadness in her family?

I offer to take her outside, for a hug and a chat, but she rallies, wants to stay and finds someone else to sit beside. She waves and smiles as M and I go.

M falls asleep in his carrier on the walk home, so I veer away toward the water, get a coffee and walk under the red and yellow trees by the seawall. The ocean is glassy, grey, still. It is a beautiful morning. I turn back up the park path toward our building. I look into the red leaves of the Japanese maple trees. I think about how I told E that her sister is in all the living things. I try to believe it. I practice: I say, tentatively, quietly, yearningly, ‘Hello, sweet girl, my love, my baby.’ I whisper it to the tree, to the sky, and finally, the tears come.

 

Where do you believe your baby is now? What do you want to believe?

If you have living children, how do you explain death and afterlife to your children?