Past midnight again.

I’m here, awake with my ghosts. The ghost of what was. The ghost of what is no more. The ghost of what could have been. I’m haunted.

On the best days, the most coherent days, I still cannot believe that my actual worst nightmare came to pass. The thing I feared more than anything else, the thing that I thought I could never stand – that thing? It happened. One of my beloved children died.

I think of the time of before. That’s how life is now. Before and After. Before, I was innocent of the way that life can shift in the span of one phone call, and how that shift can never, ever be undone. My entire world is off-kilter.

January 2 marks one year since he died. But our grief began seven months before that, when we heard the news of his diagnosis. For 18 months, I have been living in an alternate reality. Everything is darker here. The light shines so blindingly bright some days, but that only makes the shadows blacker. I see everything too crisply. I have to shut my eyes sometimes. My innocence is gone.

And yet, I’m still here. I didn’t die with my son. I don’t know how. I don’t know how I stood it. I don’t know how I stand it still.

Nightmares. I have them often. Half-remembered dark dreams, lurking shapes just at the corner of my vision, dreaming of being pregnant with twins, only to lose one. Was that you, James?

Lately, I want to be alone. I feel myself drawing inward. I’m isolating myself. I don’t want invest to my love, my emotions, into those that will only go away. And that is everything. Everything fades.

This is depression, perhaps. Or it is the depression phase of grief. Who knows?

As with all things in grief, this will ebb slowly, flowing away from me, until I find my footing again. And then, when I find my footing, I will be washed away once more without warning. It’s the nature of grief.

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Innocent sleep

Tonight, both of my living children are in bed with us. They sleep the deep sleep of the innocent – arms flung wide to the world, rosebud lips parted, hair mussed, eyes twitching as they dream childish dreams. I lie beside them and stare at the black windows, the vague shapes of skeletal trees outside. Sleep doesn’t come easily, and when it does, it flees just as quickly.

One year ago today, I held my son alive and warm. It was a peaceful and solitary sort of day. The kids were gone with their father to Tennessee to visit, and I stayed behind with James. I ate leftover Thanksgiving food, read a book, and snuggled with my James on the couch. It was an endless day in some ways, and I believed that it could last forever – that maybe it would last forever. Time hung suspended in the golden light of fall.

And now, here we are, one year later. He is gone. It didn’t last forever.

Once, I thought of death as the loved one receding from us, an ocean of sorrow carrying them away. Now I realize that’s wrong. The loved one is static. They are on the shore, and the river carries us on without them. They are receding, receding, receding away from us. James is always frozen there, at 5 months old. He will never change, never grow older. The river keeps carrying me along. On the bank, he stays, and he becomes smaller and smaller.  I feel like I’m floating through my life these days, just on the surface really, afraid to go any deeper. My heart cannot stand any more loss.

It’s hard to keep moving when your loved one does not. It’s hard to accept that you can’t freeze time, freeze the river, and spend one more moment with them. It’s hard to realize that here we are, a year later, and so much as changed, and so much continues to change.

For a moment today, I glimpsed happiness again. It was an ordinary sort of day. I spent it mostly alone. It wasn’t a bad kind of solitary. I didn’t slump into my grief and stay in bed. I was out, in the world, moving around, interacting. Sometimes I think I need to be reminded that the world still exists outside of my sorrow. And sometimes I think that the reminder is too painful. Why should the world still exist when mine has crumbled?

Today, I went out into that ever-onward world. And when I came home, for a second, my mind was clear, almost weightless. For a split second, I wasn’t really thinking about anything. Then grief draped itself around my shoulders again. Wrapped its arms around me in an embrace that I’ve come to know intimately. And I realized that nothing would ever be weightless again. True, unshadowed joy can never be mine again. Every joy will come with the knowledge that something – someone – is missing.

And still, yes, still, I count my blessings. I can bear both grief and gratitude at the same time. I am grateful that I knew him. I am grateful that he was mine. I am grateful that we were holding him when he died and that we brought him here, to his home, his only home, to say goodbye to him. There are so many things for which I am thankful, and it makes the grief maybe a little less heavy on some days.

But I miss him so terribly, and I always will. His DNA is woven into mine, and for that, I am grateful. I will always carry him with me.

Happy Thanksgiving, sweet baby boy.

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This is grief.

This morning, my alarm went off. On Mondays, I teach in the vet technology program. I love teaching. I love my students. The people I work with are funny and kind and unique. I’ve always wanted to teach.

And yet, for about fifteen minutes, I lay in bed just wanting to stay there all day, in a ball, with the blankets over my head. Why not? What difference does it make to the world if I get out of bed in the morning? The world will go on. The world will go on no matter what happens. No matter the atrocities in Myanmar, the shootings in schools, the natural disasters, the broken mother bearing the loss of her only son as well she can. The world marches forward, and we go with it.

I find it hilarious that I’m supposed to just keeping getting up, keep soldiering through this, rebuild my life. Paying bills. Doing laundry. It seems so mundane and foolish. I’ve seen behind the curtain.

But I did get up. And I faced the day, even though I didn’t want to do it. And when someone asked me how I was, I answered as honestly as I could – not great, not even good, but I’m here.

I feel like my grief is supposed to go underground now. It’s been almost 11 months since he died. It’s time to move on, right?

Every night, before bed, I close my eyes, and I see his little face. I see his perfect lips and his wild brown hair and his endless blue eyes. I yearn to hold him again so desperately, and it is torture to know that I never will. I will never hear his voice again. There is no salve for this wound. There is no band-aid big enough to pull these edges together.

My soul has been cleaved, and there is no undoing it.

Every night, I ask myself, why didn’t we fight harder? Did we fail him? Did we make the wrong decisions? The questions chase themselves round and round, like a serpent with its tail in its own mouth. I hate sleeping these days, and I often stay up well past a reasonable hour just to avoid lying down, closing my eyes, and seeing the last days of his life play like a movie across my eyelids.

Grief doesn’t get better. It doesn’t go away. This is who I am now, a bereaved mother. For the rest of my days on earth, I will be a bereaved mother. There is no fixing it. There is no fixing me. Drugs, counseling, electroconvulsive therapy…it won’t fix that my son is dead. It won’t fix me.

And I won’t stop talking about him. I won’t stop because someone is uncomfortable or doesn’t know what to say. I won’t stop saying his name just because saying his name makes me cry.

I miss you, James. I love you so much. I am so proud of everything you accomplished in your short life an everything that your life continues to do to help others. Every day. Every hour, minute, second.

“Your absence has gone through me
Like thread through a needle
Everything is stitched with its color.”

 

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What to say.

What do I say? What can I say?

Since I don’t know, I’ll be silent.

I’m as guilty of this as the next person. There are people whose loss seems gargantuan in comparison to mine. You may wonder how that can be given what we’ve been through, but it’s true.

What do you say to someone who has suffered a devastating loss? Time and time again, I see articles on Facebook, articles about grief, about infertility, about sadness of every type. Those articles always chastise others for saying the wrong thing. We’ve become so afraid of saying the wrong thing that we say nothing at all. We sit by silently as we watch those around us struggle, afraid of causing more hurt – afraid that we’re overstepping our bounds.

The thing is – silence hurts. Looking away hurts. Fading into the background, assuming that someone else will be there for a struggling friend or loved one hurts.

Do you know what grievers want – grievers of every kind? Someone to listen. Someone to be there with them in their grief. We don’t want platitudes. We don’t want to hear “at least.” We don’t want to be fixed, for these wounds can’t be fixed.

We want someone to be willing to just be with us in our pain. Sometimes that means being silent, holding a hand, offering a hug, sharing a cup of coffee and quiet. Sometimes it means listening, as a griever pours out the worst thoughts – the guilt, the hurt, the sorrow, the what-ifs, the regrets.

It means not trying to fix it or make us feel better. Nothing can fix us. We need to grieve. And we need to do it on our own time line. Grief contracts and expands without concern for what we want or need.

Last night, I received a text from someone that I barely know. She’d read something that concerned her. Her words to me (some of them anyway): “None of us can pretend to really know how you feel, if we have not lost a child. But any mother among us knows such a loss is our worst fear. I won’t insult you by saying I understand. But I care…Just know it’s ok not to be ok.” And then she offered to meet me for coffee.

This is what you say. This is what you do. And in turn, I will do it for others. I’ll keep reaching out. Because what’s the point of being on this rotating ball, zipping around the sun, if we’re not going to love and support one another? Call someone that you know is struggling today. Tell them that they’re loved, and you think about them. It’s so easy to do, and it can help pull our fragmented society together.

Where am I?

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9.5 months.

I can close my eyes and go back to that day in a moment. I can remember the icy January wind blowing through me, remember the sharp, wintry brightness of the sun, the harsh, bitter beauty of that day. I remember cradling my son in my arms. How did I hold him, and he was gone? Why couldn’t the flame of my love slip into his icy body, warm him from within, bring him back to me? If only love could’ve sustained him. If only, if only.

Where am I? Am I there, stuck on that winter day, my dead son nestled in my arms? Part of me is. Part of me will always be there.

But a large part of me is here and now.

James life and his death gave me such a gift. They opened my eyes. The agonizing pain of his death could’ve closed them. I could have gone into my pain, submerged myself into the white-hot fire of sorrow that burns within me always. It would be understandable. No one would blame me (at least not outwardly), if my grief consumed me. I could’ve destroyed my own life quite without effort.

And yet, that’s not what has happened. I’ve stumbled. I still stumble. But I keep picking myself up and looking toward tomorrow, because tomorrow is always another chance to turn it around.

James opened my eyes. He opened my eyes to the sorrow in the world. To the pain. To the suffering. To the ways that I can help others. To the way that just one voice reaching out across the void can bring someone back from the brink. He reminded me that I am not alone, and I shouldn’t choose to be alone. He taught me love.

He has taught me gratitude and perspective. He taught me that even though his death is excruciating, I will not refuse to see the gifts of it. I met him. I heard his voice. I saw him smile at his big sisters. I held him warm, cradled on my chest. He was mine, and I was his, if even for a short time. That is a gift. Always a gift, and death cannot steal that from me. Nothing can. I am grateful for that time, even though it was too short. I am grateful that I was there when he came into this world, and I was there with him when he left.

The most important thing that James taught me is not to be silent. You may think that I’m talking about silence regarding his death, and while yes, I am not silent about him, that is not what I mean.

You see, I used to believe that I am just one person, in a world of pain and wrongs. What could I possibly do to help anyone else? What difference could I possibly make? James made me realize that this is the problem. We all feel like “just one person,” and so we remain silent. We see casual racism, our peers sexually harassed and assaulted, and we stay quiet. After all, what can we really do? We can’t change anyone’s opinion, right?

Maybe not. Maybe we can’t undo the wrongs of those before us. Maybe we can’t fix the racism that came before we did. We can’t undo the sexual assaults, the harassment and marginalization of ethnic groups, of women.

But what we can do is speak out against it. When we hear the word racist, we think of the NeoNazis on television and the violence in Charlottesville. We don’t think of the soft racism, the every day racism. It’s hard to stand up to these things, especially when they are perpetuated by people you love.

Just recently, a person that I love very deeply and who means the world to me, used the N-word in a conversation with myself and my husband. In the past, because of the reverence in which we hold this person, neither of us would’ve said anything. But James taught me that this casual, every day racism is just as bad as those people in Charlottesville. How can we expect our children to be better, our world to be a better place, if we sit silently by and let these things slide because of our discomfort?

We didn’t let it slide. And we won’t any longer.

James taught me to stand up and be a voice for those people. James taught me what it’s like to want to help other people, to try to make a difference in a broken world, no matter how small. Am I making a huge difference? No. Not yet. Maybe never. But I am making a small difference, every day, I hope.

So, where am I?

I’m here. Imperfect, perhaps broken, but always willing to get up, to keep walking, to keep trying, to keep loving, to keep speaking for those who don’t have a voice. There are days when I want to throw something through a window. There are days when I don’t want to get out of bed. There are days when the sadness is so overwhelming that I wish I had died with him. Most days are just sad though. Most days, I just miss his sweet voice and his big blue eyes. In that sorrow though, I feel the warm sunshine of his life, the gratitude that he was mine, that he will always be mine.

Thank you, James. I’m so proud of you.

Where there is hope.

 

October is stillbirth and infant loss awareness month.

I didn’t lose my infant. He died. He was 5 months old, and he was the most perfectly beautiful little boy that I’ve ever met. He isn’t lost. I know where he is. He’s buried behind my house in that muddy red North Carolina clay. His headstone simply reads “James Julian Ashe – Beloved Son and Brother.”

What is there to say that hasn’t already been said? We survive this tragedy because there is no alternative. I am not strong. I am not wise. I am a heartbroken mother with two daughters that rely on me to keep getting up every morning. I am wife to a broken husband who needs a hand to hold in the dark. I am daughter to grandparents that weep for their grandson.

You say that you don’t know how I do it. Neither do I.

You ask me how I’m doing, but do you really want to know? Some of you stay, reach out, keep reaching out, even when the text or phone call goes unanswered. Some of you “dissolve into the ether,” as if you never were.

The world turns on its axis. People are afraid to say his name. As if saying his name could somehow deepen my pain. Hearing his name only lessens the pain. It tells me that he is remembered, that others loved him, that others love him still. I say his name. You can too.

I am a walking, raw, hemorrhaging heart. I am his mother. Mothers, above all, suffer when their children die. We suffer so much that we forget others suffer too. We forget that others want to tell us that they are sad, that they miss him, that they weep for us in the dead of night.

I look at my friend, heavy with child, and I see beneath the surface for just a moment, imagine what it must be like to watch your friend lose her beloved child. I look at pictures of his funeral, and I am fascinated by the faces of those in the crowd around his grave. I try to read their expressions, as if they are messages from some other time and place, and if I just study them enough, I will find answers. I will find keys to unlock the vault of grief in which I’m trapped.

One year ago, he was here. Those were the best days of his life. Those were the best days of my life. I was home with all of my children, in the place that I love best.

Those days are gone now, and James is too.

What strikes me here, at nine months since his death, is that I can go on. I do go on. I still laugh, though maybe not as much. I still read books. I still write. I still exist in the world, even when I would rather not. Every morning, I claw back from the abyss. Every night, I slide back into it.

I will never be the same. My world will never be the same.

This picture is one of my favorites. It’s exactly 1 year ago today. James was supervising as I prepared a meal for our family. I miss my sous-chef.

And yet, I’m proud that he was mine. I’m proud that he was here and that we gave him so much love. I’m not sorry for his life, though of course, I wish he was still living it. I can’t be sorry for James. Every morning, I wake up and I keep clawing. And I’m still here. And every day, there are glimmers of hope.

Hope.

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The last good night.

They say that “time heals all wounds.” It doesn’t. Time changes the wounds, but they never go away. That’s how we get scars. Time isn’t a healer. Time is just…time – impartial, blind, ever moving dumbly forward.

I find myself in a land with no map. Navigating each day has become an exercise in stubbed toes, sprained ankles, aches and pains, as I try to find a way through this unknown country of pain. I look in the mirror, and I’m not sure who I am anymore. I go to work. I do my job. I smile. I make jokes. I hold the hands of my nervous students. I cook. I clean. I garden. I read to my lovely children. Time keeps moving.

I’m waiting. But I don’t know for what. Maybe I’m waiting to exhale again – to breathe out and feel the crushing weight lift.

James’s life keeps shrinking. Five months. Five months come and gone like a sigh.

What do you say about a baby that no one really knew? How do you share memories of a baby only here for 5 months? When you lose an adult or an older child, you can share those memories with others. You can look at each other, smile, say “remember when?” With James, only one other person shares that intimacy with me. Jim. No one else knew James like we did. No one else held him every single moment of his life, knew his every baby sigh and coo.

Grief is isolating. Grieving a baby is even more isolating.

Experienced loss parents told me that some of my friends would slip away – friends that I didn’t expect. I should’ve believed them, but I chose not to do so. And they were right. People that I expected to always be there for me slipped away quietly. Others that I didn’t know that well came forward, sent me cards, letters, remembrances of our son.

Still, at nine months, I feel a sense of “time to move on.” The letters and cards have tapered off. The offers of help have slowly faded away. The texts and messages are less and less frequent. I get it. The world goes on. Other children are born. Loved ones die. We are not unique in our suffering.

So the grief goes a little more underground every day. I’m out there, functioning. I’m working. I’m taking care of my children. I’m “better.” Right? Hysterical breakdowns in public aren’t allowed at this stage of grieving. That’s past. Except it’s not. Every breath I take in and every breath I let out, I feel him with me and yet gone.

I remember the last good night that we had together. It was December 27th, 2016 – the night before his tracheostomy surgery. Jim and I both spent the night with James there in the PICU. We knew that surgery carried such risk for him, and we wanted to spend that last night together. If it was his last night, we wanted it to be a good one.

As it turned out, it wasn’t his last night, but it was the last good one. It was the last one where we could freely hold our precious son. We could cradle him on our chests. We laughed and told him stories. We listened to music – music that took us both straight back to the early days of our relationship…some twenty years ago. We talked about rock climbing, our first apartment, and the life we used to live. James lay between us, half on Jim and half on me. He was awake and alert. He listened. He basked in our love.

It was a good night. It was the last good night.

I cling to that memory when I close my eyes at night and question everything all over again. When the voice tells me how miserably I failed my sweet James, I see our family that night, nestled in the bed together. I see that night. That last. good. night.

 

But now in September

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One year ago exactly.

“But now in September the garden has cooled, and with it my possessiveness.  The sun warms my back instead of beating on my head … The harvest has dwindled, and I have grown apart from the intense midsummer relationship that brought it on.”

September and the slow death of summer. The nights have become cool and moist. With the windows open, we sleep huddled in our strangely empty bed, an extra blanket there to keep us from the chill. My flowers are starting to die. Nothing obvious, just a slow browning and wilt here and there; but I know. I’ve become linked to them somehow, during this long, strange, mild summer.

Sometimes, I just sit in my yard and look at them – at the bright, nodding heads. Purple coneflowers attracting bees, florid marigolds dragging in the heat, delicate Guara flowers waving with the breeze. These flowers, an expression of my inward pain. Somehow, burying my hands in the dirt has brought some modicum of healing.

I fear that when they die, I might die too. When freezing winter comes blasting in, I will be forced into knowledge again. When January comes, I might simply crumble into ash.

September, 1 year ago. Still hot then. The days long and somnolent, heavy with summer’s ripeness. I know exactly what I was doing. How many can say that?

At this time, I would have been sitting on the couch in our living room, likely watching a sitcom, my son asleep on my chest. I might’ve been worrying about the future. Or, I could have been simply enjoying his warm weight on me, laughing at a show I’ve seen a thousand times before.

Those days are gone now, beyond my ability to grasp. I only have the memories. I only have a small grave, outlined in granite, watched over by Mother Nature.

Fall is my favorite time of year. The feeling of an edge in the air, a biting chill, the long nights with the windows open, and the sound of the wind rustling through the trees. But now… now, fall will always be a time of mourning for me. We had one autumn with our beautiful boy, one blazing ember of a season, and then he was gone.

 

An embarrassment of riches

I’ve always been a conservative. I won’t delve into what’s this means for me exactly, but as I’ve aged, I’ve become significantly more liberal. If you asked me today, I would say that I am becoming a moderate liberal. Why, you might wonder, am I talking about this in relation to a blog about my son’s life and death? The reason is simple. My son has opened my eyes to the world. Slowly, the blinders are falling away. One of the (perhaps surprising) gifts of his life and death was tremendous gratitude.

Today was a nice day. I worked a little in the garden. I took the girls to Lego Hour at the library. We went to Trader Joe’s and bought our grocery list for the week according to my meal plan. The girls enjoyed fresh fruit samples at Trader Joe’s, and I enjoyed a free coffee sample. After a simple, filling dinner with fresh vegetables from my aunt’s garden,    I went for a walk around the neighborhood.

As I was walking, I was filled with sudden gratitude. Despite the horror of living through the death of my only son, gratitude nearly knocked me off my feet today.

We have everything we need.

Stop for a moment and let that thought sink in. Let it truly sink it.

We have everything we need.

My children are clothed and fed. They have health care. They are able to attend school for as long as they desire, pursue whatever degree they want, whatever its utility in the real world. We live in a small, simple house. It is about 1400 square feet. 3 bedrooms and 2 baths. It is tidy and quiet and peaceful. We have almost a half acre of flat, wooded yard where the girls can play in safety. We live on a friendly cul-de-sac where they can safely ride their bikes and run across the street without looking first. Our cars run reliably, and we own them. I am healthy. My body feels good when I wake up in the morning. I can do physical tasks when I need to do them. Nothing aches. Nothing torments me (physically, anyway). The same is true for my little family.

I’ve believed for a long time that what I have is here because I somehow earned or deserved it – or someone who loves me earned or deserved it. I was raised with the conservative ideals that what my family has belongs to us. Socialism has always appalled me. Why should others get to take away my hard-earned wages? Why should my money support someone too lazy to work and on welfare?

But today, as I stood in my garden and took in the view around me, the view that included our modest but comfortable and safe house, my healthy, happy children, and every other abundance in my life, it struck me that much of it is the result of luck. Not all of it – no. I cannot ignore the giant contribution that my family has made to the way my life has turned out – but again, at the base of it…luck.

We are taught from early on that life is the pursuit of things. We are taught that we never have enough. We are bombarded with advertising that convinces us that we need granite countertops in our kitchen to truly be happy. We need white subway tile in our bathrooms, otherwise our house just looks dated. We need things to truly find happiness. Money and acquisition of nice cars, nice houses, toys, electronics…that will bring us happiness. Buy buy buy. You need more. And capitalism tells us that it is ours. We don’t have to share. We don’t need to share. It belongs to me. It’s all mine.

Meanwhile, our society becomes more and more fragmented. We are isolated in our houses, we are isolated in public while we stare at our smartphones instead of engaging each other. We work too much, we worry too much, we buy and want and consume things too much. The village is disintegrating, and it is much to our detriment. Everyone pursues their own agendas.

All of this is to say that I want to give it away. I want to open my hands and let go of the things that I don’t need. I want to give all those things to others that could use them but don’t have access. I want to give our money to others. When I go to bed every night, I want to think about what I did that very day to lend a hand to another struggling human.

We are all in this together. What is mine is only mine because of a particular set of circumstances. It could easily have been another way. I could be that person sitting on the side of the road with a sign reading “Hungry. Anything helps.” I could be that recovering drug addict mother. I could be the tired woman waiting in line for WIC to feed her family and suffering the judgment of all those around her. I could be dying from cancer, lying in a bed somewhere, hoping that the end is coming soon. I could be sleeping in a bed in the Middle East, fervently hoping that no IEDs explode nearby, killing my entire family.

But I’m not. I’m here, in the mountains of Western North Carolina, in a small, comfortable house that I love, with the family that I love, with vegetables growing in my front yard.

Of course, I must feed and cloth my children first. It’s my responsibility as their mother. But beyond the basic necessities, we really don’t need much in this world to be happy and fulfilled.

So, I’ll say to you this: Open your hands and let your riches go. Give them to others so that they can have these things too – feelings of stability, safety, warmth, gratitude. Give it away. And open your heart to gratitude. No matter how dark the day, no matter how great the sadness, remember what you have and be thankful for it. None of us can take it with us. And nothing lasts forever.