The path.

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November 2016

As much as I write, I can’t find the words to explain what it’s like to know that you can never hold your baby again, that you can never see his blue eyes, hear his little voice, or run your hand across his fuzzy head. You can never say the things that you wonder if you said enough. You can never go back and hold him that time you paid the bills instead.

He’s gone. He’s gone for always. As much as I love my daughters and my husband, as much as I have a rich, full life, there is part of me that died with James. That part will always be with him. There is part of me that shudders at the possibility that I have 50 or more years to live without him here. There is a hole in me that can never be filled. And disbelief persists. There is still somehow an unreality about his life and death. As if I believe it didn’t happen, that he’s just in the other room, sleeping peacefully.

His birthday approaches so rapidly that I cannot believe it. This time, one year ago, I was swollen, uncomfortable, and terrified. I had no idea what the future would bring. I only knew that my baby boy was sick, terribly, terribly sick.

This week is the SOFT conference. SOFT stands for Support Organization for Trisomies. It’s an annual conference where families of trisomy children come together to learn and to meet and support each other. Many of the friends that I have made in the trisomy community are there with their children. I see the pictures on Facebook, and I wonder “why not James? Why not us? What did we do wrong?”

You see, I’ve always believed that if you do everything just right, if you follow all the rules, if you look far enough ahead, you can figure it out. Whatever it is. With James, I tried to foresee every eventuality. I tried to navigate the path through the dense woods.  I tried to find the RIGHT path. And when he died, I wondered where I had turned down the wrong path – where the medical establishment had turned down the wrong path. Because, clearly, it was our fault somehow that he died. It was something that we did wrong, some decision that we made somewhere without realizing the consequences. Was it the tracheostomy tube surgery? Was it stopping his support when we did and letting him go? Was it not waiting longer to see if he would recover?

It all comes back to the idea of control. We have none. We think if we do it all right, then somehow, we win. We don’t. Any moment, any second, something comes along that we have no control over – whether it’s pulmonary hypertension or a packing truck and an irresponsible driver. Life is out of our control. Death is out of our control. Realizing these facts is utterly petrifying.

I try to tell myself this, at night, when I lie in bed, unable to sleep. When James’s life plays out on the movie screen of my dark eyelids – I tell myself that we did our best. Even doing our best, he died. Even loving him with every fiber of my being, he died. When I see his last 48 hours, I go through it all again, the questions, the what-ifs, the other endings that we didn’t have.

Little boy, I wish you were here. I wish you got to grow up with your sisters to protect you. I wish I could hold you one more time and make sure that we told you everything that we meant to say. We love you, now and forever.

 

 

 

Heartsblood

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Do you know what heartsblood look like when it dries? I do. It’s deep, rusty brown. When your heart cracks open and bleeds, the stain never comes out.

I couldn’t bring myself to wash these blankets. James came home from the hospital for the last time wrapped in these, and the site of his PICC line bled into the fabric. I’ve stared at these blankets many a night, trying to understand the riddle of my son’s life. I’ve crushed them to my chest, that precious, spilled DNA – the only physical fragment of my son’s body that I have left.

The days have been passing in a strange sort of fog recently. I’ve had trouble getting out of bed and doing the things that I love. My creative energy has gone from full-throttle to the lowest ebb that I can remember. I don’t want to write. I don’t want to draw. Days seem to pass me by, and I realize it abruptly. At night, I don’t want to sleep. It’s quiet. Jim is usually working. The girls are in bed. In that still space, I can just … be. No one needs anything from me – except perhaps what I need from myself.

His birthday approaches fast. I can’t imagine how it’s been almost a year since our beautiful boy came into this world and seven months since he left it. It’s a colder place. My bed is emptier, even with my husband and two girls piled into it. It’s just not the same. It’s still hard to accept that he’s forever frozen at 13 pounds, 5 months and 1 day.

Today, my husband and I went to our new neighbor’s house. They are re-doing the landscaping and offered us all of the granite and quartz stones that they had lining their gardens. We are using it to create James’s gravesite.

For some reason, in the past 7 months, I haven’t been able to do much with the site itself. I thought it was because I was waiting for inspiration. But today, as we outlined the site with these North Carolina rocks – his only home – I realized that it’s because it’s the last thing. It’s the last thing that I can do for my little boy. It’s the last way that I can take care of him. When that gravesite is finished, some seal of finality has been stamped on his life.

It doesn’t make much sense, I know. He’s been gone for seven months. But somehow, finishing that site is going to rip the barely formed scabs off of all of the wounds. We finished laying out the stones today, and I sat beside his grave and looked at it. It looks like a grave now. It looks like a place that someone is buried. Except, it’s not just someone. It’s my baby boy. It’s James. That vibrant, blue-eyed, crazy-haired chubby little baby who loved his mommy and daddy – he’s buried under that dirt.

Last night, we watched Minority Report. It’s one of my favorite sci-fi movies from eons ago. IF you haven’t seen it, it’s about a police officer (John Anderton) in the future who works for a company that can predict murders before they happen. “Precogs” can see the future. John Anderton’s own son was kidnapped and has been missing for six years. There’s a scene towards the end where one of the precogs has a vision of Anderton’s missing son, as he would be if he had lived, and she tells John about it. I broke down and sobbed.

“He’s on the beach now, a toe in the water. He’s asking you to come in with him. He’s been racing his mother up and down the sand. There’s so much love in this house. He’s ten years old. He’s surrounded by animals. He wants to be a vet. You keep a rabbit for him, a bird and a fox. He’s in high school. He likes to run, like his father. He runs the two-mile and the long relay. He’s 23. He’s at a university. He makes love to a pretty girl named Claire. He asks her to be his wife. He calls here and tells Lara, who cries. He still runs. Across the university and in the stadium, where John watches. Oh God, he’s running so fast, just like his daddy. He sees his daddy. He wants to run to him. But he’s only six years old, and he can’t do it. “

It’s hard not to wonder what my son would look like, my James, if he was here now. How much would he weigh? What setbacks would he have had? What milestones would he have conquered? Would he have had heart surgery?

There aren’t answers to these questions, because that was not the road that we traveled – the road that we continue to travel. This road is often dark and lonely. But still, we must walk it.

The hole

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There’s a hole inside of me, and I don’t know what to do about it. Some days, I can almost ignore it. Almost. Some days, I get up and fall in headfirst. There’s no way to predict what any given day will be like.

I don’t know how to grieve. I don’t know how to do this right. Part of me just wants to bury myself in anything – everything – to block out the pain, to help me forget. As if I could ever, ever forget. At best, maybe I can think about something else for just a little while.

I don’t know if you ever learn to live with this kind of pain. I think you just learn to live around it.

Every night, before bed, my brain has taken to playing me a movie. This movie is always the same. It always has the same ending. It starts with James’s condition deteriorating on Saturday night. I go through the whole scenario again. I visualize the central line in his femoral artery. I remember the multiple IV medications running into him – the Flolan, Synephrine, midazolam, fentanyl, fluids. His trach. The nitric oxide he was inhaling. The G-tube in his stomach.

I see it over and over again. And I see our decision. I remember when they came to turn off the ventilator. I remember when they handed him to Jim to hold. His eyes opened, and even with just that little bit of movement, James started to struggle. I remember begging the doctor to give him a sedative. And they did. He relaxed into his daddy’s arms. And he died. It wasn’t immediate. But it was peaceful and calm.

Over and over, my mind plays this movie on the black screen of my eyelids. I always want the ending to be different, but it never is. I can’t even see a way in which it could be different.

Every night, I have to replay it all so that I can come to the same conclusion. We did everything we could for James. We loved him more than anyone else in the entire world. We fought for him to the end, and when he was tired, we listened.

At least, I tell myself these things. Otherwise, I am faced with the question of whether we should’ve waited longer. Should we have given him longer? Did we give up on our son? Someone I trust greatly once told me that we gave him life. We gave him all that he had. I try to hold onto that when the bleakness of everything starts to drag me down.

Six months and yet, wasn’t it just yesterday that he was here with me? Snuggled safe and sound beside me in his blanket, his bright blue eyes searching my face? How could it be half a year ago?

We loved him so much. We love him still.

 

Loving Jim.

On January 19 of 1997 (coincidentally the day on which our middle child was born), I started dating a young college boy. I was a senior in high school, hellbent on getting out of the small town in which I’d been raised. I previously met this college boy when I was 14. We went to *cough, hack church ahem* together. He was 17 to my 14. I followed him around for a few weeks, doe-eyed at his thick brown hair, lean, athletic runner’s body, and aloofness. I fawned over him. Then he graduated, moved on to college, and I moved on to a new crush.

Three years later, I was working at Captain D’s. Yes, the fast food fish restaurant. After a late shift, I’d gone to Wal-Mart and was perusing the CD singles area (remember those? CD singles!). I turned to see one of my (many) high school crushes standing behind me.

I think I exclaimed something along the lines of “Jim Ashe! As I live and breathe!” Ok, not really. That might’ve been my response if I were a Southern belle debutante (which I am not). In reality, I have no idea what I said, but it turned out to be a fortuitous meeting. I didn’t know it at the time, but I had just re-met my future husband.

We talked in Wal-Mart for close to an hour – standing in the CD aisle. I have no idea about what. When we parted ways, I was disappointed that he didn’t ask for my phone number. This was before the age of cellphones. It was late, and I remember calling my mom from a payphone to tell her where I was and when I’d be home. I also told her about running into Jim. My mom still remembers that phone call even now – 21 years later.

Fast forward a couple of weeks, and I went to visit my best friend. Jim was there, hanging out. We spent a couple of weeks spending time as “friends” together. One night, we were watching Forrest Gump (at the time, Jim’s favorite movie), and I mentioned that he should ask me out.

That’s where it began.

We dated for about a year before unromantically agreeing that getting married was the “logical thing to do” since I was moving back to Florida to continue my undergraduate degree. It’s not the most “swept away” romantic love story ever…but it is the greatest love story of my life.

We married on July 2, 1999 in front of about 100 family and friends.

Since then, our journey has been one of great joy and great grief, small hurts and big hurts, big loves and little loves. We’ve argued. We’ve made up. We’ve lived in … I’m counting here … at least 10 different houses/apartments scattered over 5 or more cities in 3 different states. We’ve finished advanced degrees and managed to stay married to each other. We’ve held each other up and let each other down.

We’ve welcomed three very loved children into this world and said a devastating goodbye to one of them.

This journey is not what I could’ve foreseen. I guess life is never as we foresee.

Thanks, Jim, for sticking with me through the late 90s and early millennium, when I made you listen to Third Eye Blind and Tonic and every other bad pop band out there. Thanks for listening to “How’s It Gonna Be?” seventeen hundred times with nary a complaint. Thanks for skiing with me at Hawksnest. Thanks for teaching me to rock climb, for pushing me outside of my comfort zone. Thanks for loving my friends and family as if they are your own. Thanks for letting me have all the cats and bottle fed kittens and noisy, obnoxious parrots that I wanted. Thanks for supporting me through vet school, even when I was at my worst.

Thanks for being the father of the three children that I love best in the world and for not panicking when Hazel was born on the couch. Thanks for holding our son’s hand every day of his life and always, always being willing to give up every part of yourself for him. Thank you for your calm acceptance of his trisomy 18 and your willingness to be his daddy and support system for as long as he needed us. Thanks for doing the dishes, for cooking dinner when I’m sad, for loving me when I’m at my worst.

You are the epitome of what a father and a husband should be.

You are a once in a lifetime treasure, and sometimes, I foolishly forget it. I love you. I love what we have created in the last 18 years. Here’s to 50 more!

 

 

 

 

The thing about grief

Here’s the thing about grief.

You can’t ignore it. You can’t bury it. You can’t fill up your time in the hopes that one day, you’ll turn around and the grief will be gone. Grief will find a way out. Whether through tears or anger or resentment or bitterness, grief gets out. It will not be ignored.

I remember shortly after James died. I was sitting on the couch, and it occurred to me that I would feel this way – like a hole had been torn in me – for a long, long time. And I told myself that I needed to get comfortable with my grief. In my head, I envisioned myself snuggled in a warm sweater, holding a steaming cup of coffee, and snuggling down into a well-worn sofa. It’s odd that I would picture grief this way, but what I knew – what I understood – was that my grief wasn’t going anywhere, not for a long, long time. And I could ignore it. I could try to bury it. I could keep busy. Or I could become comfortable with the sadness.

We are not a patient society. And grief takes patience. It takes patience and a willingness to let it wash over you without fighting it. Because no matter how big the wave of grief, it always returns you to shore.

My mother and I were talking recently. I asked her why everyone in my family tries to ignore grief, tries to keep busy in the face of our losses. She said that it was because our family doesn’t like “drama” in their lives. It shocked me to hear her use the word drama. Drama isn’t how I would describe grief at all.  Drama, to me, sounds self-inflicted. Grief is not drama. Grief is the emotional manifestation of a love that has been taken from us. Grief is a hole torn in your very being. It’s against your will, and over it, we have no control.

Lately, I think I have been trying to ignore my grief. I have thrown myself into projects – writing, speaking, considering a new business idea. And I’ve gone numb. But the grief slips out through the cracks. I know it’s there, and it’s waiting for me to acknowledge it and to deal with it.

Today,  I made no plans. I sat on the porch and let the breeze blow over me. I marveled at the beauty of this late June day.  I thought about grief and how incredibly inconvenient it is. No matter what, it’s always there. I can’t control it. I can’t heal it. I can do nothing but either try to ignore it in the hopes that the wound will magically heal itself or I can actively confront my grief.

Grief must be tended to heal. The wound must be cleaned daily. The bandage must be removed, taking all of that old scar tissue with it, exposing the healthy wound bed below it. Grief needs oxygen. Every day, for a long time, that bandage must come off.

Grief is scary. No one ever talks about that. It’s scary to realize the depth of your love and loss. It’s scary to realize that you can’t ignore it. Giving into your grief – giving it space and time and quiet is incredibly hard. I did well in the months after he died. I wrote. I drew. I cried. But now, I’m impatient. This should be over, right? I should be done with the intense grieving. It’s time for me to be better.

Today, I realized that it will be a long, long time before I am better. And I have to find a way to be ok with that. There is no timeline for this. Grief will be my constant companion for a long time, and I know this. It’s nothing of which to be frightened.

So maybe I won’t start a business. Maybe I won’t write a book right now. Maybe I’ll just accept that I need to feel my grief to the fullest so that I can start to move past this part of it – to the part where the memories bring a smile to my face and a lift to my heart.

Get comfortable with grief. Great grief means great love.

 

1 year.

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Here I am. One year from the worst day of my life. One year from the moment that I heard that the test confirmed trisomy 18. One year. One year. One year. It’s like that game you play in your head – if you repeat something enough times – it becomes non-sensical. What does one year mean? What does time mean?

Where am I now? Where are we now?

James is gone. He’s been gone for almost six months. I can’t wrap my head around that sometimes. It’s as if, somewhere in my mind, I believe that he’s still here. He’s just around the corner, and one day, I’ll walk around that corner, and he’ll be there, waiting for me. His bright blue eyes will light up, and he’ll make his baby noises, and I’ll pick him up and hug him tightly. I’ll snuggle him on my chest, and I’ll sing him one of our favorite songs. We’ll sit on the couch, and it will be and my sweet James, just like old times.

But he’s gone. It’s not to be.

In the past year, I’ve had a renaissance of spirit. I am not who I was one year ago. I am kinder, I think. I try to be, at least. I try to help others. I try to do things that make the people I love smile more. I try to criticize less. The old me is still there. The old habits, the old ways. She comes out sometimes, but I stuff her back down.

My creativity is over-flowing. I can’t find enough outlets for the things that I want to say and do. I’ve quit my job. I am writing a novel. I’m in a bimonthly writer’s workshop. I want to start a business. I have a radio show and a new community at the radio station. I’ve done The Moth.

I am two women. These two women war within me. Who am I now – with one of my children gone? When your child dies, you feel as you’ve failed the most important test of motherhood. I’m a mother. I’m supposed to protect my children. I’m not suppose to let anything happen to them. And yet, I let my son die. I held him when he died. We actually made a choice to let him die. I failed. I failed even before that, when my body made him broken.

For the past six years, I’ve subsumed my life to mothering – I’ve read about baby led weaning, discipline, homeschooling, un-schooling, the rise of diabetes and obesity, correct carseat installation, secondary drowning, child-proofing… I haven’t been writing. I haven’t given voice to this other woman inside of me.

And now she is here, at the surface, demanding to be seen. She demands that I write. She demands that I do better, that I be better, that I am better, and when I’m not better that I recognize it. She demands that I stand up and tell our story loudly. She demands that everyone know James’s name – that he was here and that he was beautiful. She demands, demands, demands.

She exists cheek-to-cheek with that other woman – the mother. They are like two sides of the same coin. I sometimes wonder if they can coexist together, or if one must consume the other?

This is where I am a year later. Burning with creativity, burning with a need to share James with the world. Burning with a need to be seen. Burning with grief.

I burn. I sometimes wonder if the flames will consume me.

It’s been one year. In one year, I have heard the worst news that a mother can hear, I’ve birthed my sweet baby, I’ve held him, and I’ve let him go.

One year.

Grief lull

My grief has been in a lull for the past few days. The fifth month since he died has passed. It was an anniversary that I dreaded – the time when his days alive would equal his days gone. Leading up to it, I was in a black hole of depression. Since it has passed us now though, I feel better. Or maybe I’m just getting used to him being gone. Or maybe I’m back in denial. Who knows? Grief  is a constant surprise.

Since I’ve quit work, my emotional stability has improved 100-fold. I am more patient with my daughters. I have the ability (and maybe some desire) to cook dinner again. Household chores don’t weigh so heavily on me. I guess, in other words, I am enjoying being a stay-at-home-mother.

Seven to ten years is when emergency veterinarians really start to burn-out on nights, holidays, and weekends. I think I was reaching that point anyway, and then James’s death just exacerbated that feeling. It’s hard to reconcile all of the time I spent in school and all of the student debt with being a stay-at-home-mom, but right now, it’s best for my family. It’s also best for me.

My radio show (Calling All Species) had its debut episode last Friday. I’ve been wondering where radio has been all my life. It comes so naturally. Of course, the show is vet-centric, all about animals. It’s a great deal of fun, and it brings me out of my grief. I’m also writing daily. I’ve started a fiction novel. Of course, there is a great deal of autobiographical content, but ultimately, it will be fiction.

I’ve been spending less time on social media and more time working in my yard. I finally got a vegetable garden planted – tomatoes, cucumbers, squash, peppers, and corn. I also finally planted my flower beds. For the past year, they’ve been serving admirably as weed-growing beds, but I finally got around to cleaning them out and planting actual flowers.

On the anniversary of 5 months since James’s death, I did something rather drastic. Growing up, I used to taunt my parents and my aunt with the statement that I would get a tattoo as soon as I turned 18. Once I hit eighteen, I realized that there is nothing that I would want permanently on my body…certainly not a dolphin or a Chinese symbol or something else equally meaningless to me.

When James died, for some reason, it came to me that I should get a tattoo. I’d never really had the urge, and yet, here at almost 38 years old, I suddenly felt the need to have a physical reminder of him on my body at all times (as if the c-section scar wasn’t enough). For weeks, I thought about it, but nothing seemed right. I thought about a line of poetry – especially “nothing gold can stay” from Robert Frost, or “the lowest ebb is the turn of tide,” from Longfellow. Yet, I couldn’t find a font or position I liked, and I decided that it wasn’t “meant to be.”

And then, the day before the fifth month anniversary of his death, it hit me like a bolt of lightning. For days to weeks, I had stared at the beautiful mural on the wall of his PICU room. It was a mural of leaves becoming a butterfly (a Rajah Brooke’s birdwing butterfly). When I thought of it, I knew immediately. On the anniversary, I went to a local tattoo studio and had that mural tattooed on my back. And it is beautiful.

All in all, the days pass me by. The agonizing phase of grief has subsided somewhat. The pain never goes away, and I never, ever stop missing him and wishing he was here. All the same, we keep going. The river keeps flowing, carrying me along in the current. I can’t swim against it to stay with him. I have to go wherever the river goes. It is life. We go on while our loved ones recede into the distance. The human spirit is ever resilient.

I love you James.

Why I write

My child died, and I glimpsed the unknowable universe. For just a moment, it all flashed before me, the true nature of time. We are here for just a blink. Though I would like to think it otherwise, our lives are so terribly brief that the cosmos doesn’t even register them. To the universe, I have been born, lived, and died already. My life is instantaneous.

This urge to write – to tell this story – burns inside of me. Why? We are not immortal. None of us. The closest we get to immortality is that others remember us when we are gone. Plato was just a man. And yet, we all know of him. I am no Plato. But I do have a story that burns inside of me. It is the story of my son and my love for him. Though he rots in the ground, I can give him life again. When others know his name and his face, he yet lives.

I trace the veins in my hands, so prominent. Filled with blood – to my heart and back again, saturated with oxygen and then deprived of oxygen – all in a great circle. Sometimes the urge, so great, to cut them open and watch the blood spill onto the floor, seeping in, staining the gleaming hardwood – patterns of sorrow etched there forever.

The heart, so scientific. Divided into atria and ventricles, the great vessels – the carotid, jugular, brachicephalic trunk. And yet, the seat of all feeling. This big dumb muscle responsible for all of the agony in my body.

Since I won’t slice my veins open, won’t allow the blood to seep out, depriving that heart muscle of its needed fluid, ultimately killing the home of my emotions, I must find another way to root out the pain. If the heart cannot die, there must be some other way. So I write.

Parallel universe

This post comes with a caveat. First, I wrote it Tuesday.  Second, I am not going to harm myself, despite how this post sounds. I repeat. I am not going to harm myself. I write how I feel – the good, the bad, the ugly. I’m writing it because I know that other loss parents feel these things, and they are so hard to voice. We feel ashamed or embarrassed for feeling these emotions, and we bottle them up inside. Shame has no place in grief – it’s hard enough as it is.

The other caveat is that unless you have lost a child – you have no idea what bereaved parents are suffering. You have no idea how messed up your emotions become and what stupid feelings or actions might happen as a result. My life has entered an alternate dimension. It’s like I’m in a boxcar, and my car left the train and went off onto a side railing. The “regular” track runs alongside me, so I can see everything, but I’m over here, separated, observing. I’m in an alternate but parallel universe where my child is dead. Life goes on. It must. But I am no longer in that normal life…where other people live. I’m here, on the side rail, trying to figure out how to live my life again. If you have a child, imagine, just for a moment, what it would feel like to never see them again. To never touch them again. To never hear their voice. Imagine having to get up, day after day, and realize that they’re gone.

Some days, I feel like I’m doing pretty well. Then, something happens, and I realize that this mild feeling of normalcy is just thin ice on top of which I skate. This morning, driving the kids to school, I was planning out my day. Drop the kids off, go to the local coffee shop, write for a while, work on radio station stuff. Then pick up kids, run a few errands, and go to the station for a bit to drop off supplies. Then go home, hang out for a couple of hours, make dinner, kids to bed.

All of a sudden, it struck me. This is life. My life.  I have to keep living it. Even when I don’t want to do so. Even when I want to lie down and never wake up – I have to keep going. I have to keep getting out of bed every morning. And lather, rinse, repeat.

My heart dropped in my chest. Today, I don’t really want to keep going. I want to lie down and close my eyes and sleep for at least a year. Maybe in a year, when I wake up, like a shorter term Rip Van Winkle, I’ll be all better. I can’t sleep enough.

There is no “all better.” There never will be. There are just the endless days ahead of me without my son.

I want to smash something. I want to smash my coffee cup against the hardwood floors. I want people to stop and stare and point, open-mouthed, at my destructiveness, at a public outburst the likes of which are rarely seen outside of viral media.

But I won’t. I’ll sit here. Sip my coffee. Write in my journal. Go on looking relatively normal, as if my life isn’t clouded by this overwhelming sorrow. The other day, as I was driving, I suddenly had a flashback to when he died. I knew he was going to die before it happened. We had opted to take him off  the ventilator. He wasn’t brain dead. He was very  much there with us. Before he died, he opened his eyes, looked at us, listened to our voices, tried to give us a smile.

How do you know that your child is going to die, hold him while it happens, and not completely lose your mind? I still don’t know how I did it – with as much anxiety as I have, as many panic attacks as I’ve suffered, how did I just sit there and let him die in my arms, with a relative amount of calm? Why wasn’t I screaming? Wailing? Tearing out my hair? Clawing my arms until my blood ran red?

As the feelings of his death washed over me again, I saw myself smashing my car into the bridge I was approaching. I imagined what would happen – the crumpled hood of my van, steam rising, the deployment of the airbag, my head snapping forward with a whiplash movement, blood slowly seeping into my eyes, clouding my vision. Heartbeat slowing, pulse weak, fading away. My vision graying, my spirit leaving my body, seeing it all from a distance, like a spectator of my own life.

It may sound terrible to think of something like this. It may sound like suicidal ideation. Maybe it is. It’s hard to say. I had no urge to actually do it. I’ve spoken to many loss mothers (even today) who’ve had the same kinds of visions – picking up a broken piece of glass from a dish, slitting the wrists, letting crimson blood soak into the floor, forming a mystical mandala there – agony written in ruby.

If you haven’t lost a child – you don’t know. You can’t possibly know what this agony feels like. I am separated from my baby. I can’t touch him. I can’t see him. I can’t hear him. I can’t smell him. I am completely apart from him. The crazy part? I haven’t broken. I have bent. I am so incredibly bent as to be unrecognizable to myself some days, but I am not broken.

Some days, I want to scream at people that I get a pass. I get a pass for at least a year. I can act as foolishly as I want to, and you can’t be mad at me or frustrated at me. Yes, I quit my job with no notice. Yes, I’ve flaked on appointments. Yes, my short-term memory is absolutely terrible right now, and I can barely keep up with my keys. Yes, my emotions are confused and mixed up.

Through it all, I’m somehow still going. I’m taking care of my girls. I’m cooking dinner. My house is clean. My children still get to school on time. I am still here. Doing it. Doing life. Still living here, in this parallel universe.

 

The After

Living in The After is a strange and jarring experience. The landscape looks the same. My children still go to school. Our house is unchanged. I still do the dishes, the laundry, walk the dog, sweep the floors. I still need to buy groceries, get my car inspected, keep engagements.

Yet every action, every errand, every word is overshadowed by my loss. I am never free of it. Even when the day is beautiful, it seems dim. Grief blankets everything like a fine layer of ash. A layer that I can’t dust away. Grief starts at my core and expands outwards, pushing every other emotion and thought to the periphery. I am brimming with sadness, with loss.

I dread innocuous conversations. The check-out guy at Trader Joe’s – he wants to know how my day has been. I give monosyllabic answers. He continues to ask. I want to scream that my son is rotting in the ground and that getting the kids to the dentist took all of my strength today. I don’t. It’s not his fault. He doesn’t know. Small talk exhausts me. We met the kid’s new dentist today, and I’m sure she found me cold, reserved. I had no energy for small talk, for smiles.

I prepare myself mentally for those inevitable questions: “oh, you quit your job? Why?” or “how many children do you have?” I think about the answers that I will give to hypothetical questions that haven’t been asked yet. I practice my responses in my mind, theatrical hand-waving, defining the new era of my life without my child – the renaissance of my spirit, the creative outlets I’m finding. All smoke and mirrors to ease other people’s discomfort. As if I should care.

Some days,  I want to wear a shirt that says “my baby died, and no, I’m not ok.” That way, I don’t have to answer any questions. Other days, I’m almost, almost ok. Not good. Never that. But I’m almost out of the hole.

Denial remains strong. Every day, I ask myself, “did this really happen? Was he really here, in my arms, then gone? Are those memories real?” How to explain to someone that hasn’t lost a child what it feels like to desperately need to see and feel your child and to know that it’s simply not possible?

The days when I’m ok – I can see the future, and I see myself in it. The days when I’m in the hole, it feels inconceivable that there are so many days left before I myself can die. It’s hard to imagine getting up and doing it all over again, every single day, knowing that my son is gone. The weight of another day is almost crushing. And then another day passes. And I’m that much closer to feeling somewhat normal again.

Everyone says that the first year is the hardest. We’re 5 months into the first year. In fact, this month’s anniversary represents the month in which his life will equal the time that he has been gone. It’s hard to accept that, to believe it. 5 months has gone by quick as a sigh and simultaneously so slowly.

It’s hard to think that I will “feel better” after the first year. Do I want to feel better? Do I want to be happy when my son is gone? I know it is human. We move on. We must. It still makes me sad to think of that day. As if I need more sadness…I am now worrying that I might feel better in the future. I don’t want to feel better. I want James here, in my arms.

More than anything, I yearn for my baby, my son. I yearn to see his blue eyes, his wild hair. When I think of him out there, in the earth, I want to hit something. I want to bleed. I want to scream. Even though his spirit departed months ago, the decomposition of his remains haunts me. My baby is gone. In every sense of the word, he is gone.