What is still lost.

 

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When my daughters were born, I reveled in the beauty of new motherhood. The lack of sleep, the diapers, the nursing round the clock, the aches and pains of recovery from childbirth – it didn’t faze me. I love babies. I love the warm, sleepy snuggles, the gentle pull of a nursing newborn. Of course, there are the less fun parts, but they were always eclipsed by the beauty of my children.

In November of 2015, I found out that I was expecting my third child. My eldest was four and my youngest 2. They were past the snuggly baby stage – walking and talking, little mimicries of us. And so when I found out that I would again hold a newborn, my heart leapt with joy. I pictured the long, lazy days of nursing, of sleeping nestled in my bed with an infant against my chest. I warmed to the thought of wearing my sleeping baby against me in a wrap. I envisioned a baby snuggled in a muslin blanket, light as air, sleeping in a cradle in the living room while Evaline and Hazel cavorted nearby.

Then, my dreams were dashed. Instead of quiet, sleepy days of nursing and nights snuggled in bed together, we had nasal prongs and a feeding tube. We had an oxygen concentrator and 13 twice daily medications. Those first days of new motherhood were replaced by the NICU and the nurses and doctors there.

Nothing was what I expected.

I loved every moment of being James’s mother. I would never trade him for a healthy baby. I wouldn’t undo him, because he was a gift. I try not to lament the things that we didn’t get to do.

When Gemma was born, I thought things might be better. I thought, since infants take so much care and attention, that my grief might shift. I might feel “better” for a little while. I thought, naively, that maybe life would suddenly start to feel more normal again. Maybe my world wouldn’t feel so fragmented. And in some ways, Gemma is healing. I am able to do the things that I missed so terribly with James and that brings me comfort. I don’t take it for granted. The waking up at 4am to nurse, the dirty diapers, the constant need to be held, I revel in it, because I know what it’s like to have that stolen from me.

But in other ways, I am broken open anew. And I had so little emotional reserve to start. I look at Gemma, and I see the baby that was but is no more. I see the dark hair and the bright eyes, and there is James. I lie in bed at night and remember the nights of broken sleep, alarms warning me that my son might die. I see his dark head, and I hear his quiet baby coos – the ones that cost him so much effort to make. Where is he? Is he really gone? Did I really hold his chubby body to mine as he took his last breaths and went to a place where I could not follow? WHY?

I am still steeped in grief. I am still confused and lost. Why did this happen to us? Why isn’t James here any more? If anything, life is more difficult – balancing the needs of my daughters with my need to grieve my son. We aren’t healed. We are nowhere close to healed. Gemma is a bright light, but there is still so much darkness all around.

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She is here.

Once upon a time, there was a naive girl named Catherine. She thought that she would grow up, go to college, marry her sweetheart, have children, do something in the world that mattered, grow old, and slip away one night, at 96 years of age, into a tequila sunrise sort of ending.

Life hasn’t gone the way I envisioned. It’s been more wonderful and terrible than I ever could have imagined. I have given birth to four beautiful children. I’ve let one of them go. I’ve lost loved ones in tragic accidents and to illness. My heart has been cracked open to its foundation, and the depths of my grief plumbed. I no longer think I will slip away at 96 years old, although one can hope. I no longer take my children’s health for granted. I know that we all walk the precipice every single moment.

Still, I can find love and maybe even joy in my heart.

Gemma Rose came into the world at 12:28pm on July 13 (Friday the 13th, no less). Her birth was a planned c-section, but it was scheduled for July 17. Due to my rising anxiety levels, erratic blood sugars, and “advanced maternal age,” we elected to go ahead a few days early. The team that cared for us was phenomenal. Everyone was pleasant and helpful. They kept me apprised of what was happening through the entire surgery. Within 20 minutes of starting, I was holding our baby Gemma. 6# 11oz. She came out with her eyes wide open.

In the past 3 days, I have found that it’s new all over again in ways I didn’t expect. I expected pain and grief and anxiety, all of which have happened. I’ve also felt a ray of light briefly shine onto my pain and maybe ease it for a second. It’s never long, because James is near to me always, but those flashes of light give me some hope for the future.

Welcome to the world, Gemma.

 

Let’s talk about PPD – and I mean pre-partum depression, not post.

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Seventeen months. It’s been seventeen months since my son died in my arms. And yet still, there are days when I don’t believe that this happened. I have 7 weeks and 6 days until this baby girl is cut out of my body in a repeat c-section. We haven’t picked a name. We don’t talk about her much, my husband and me. It’s like we’re holding our breath and waiting.

In the last few days, I have been having a prolonged and slow breakdown of sorts. My nights have been fragmented into 2 to 3 hour blocks of sleep. I bolt awake, my heart racing, and pace the house at 3am. I look at my life and feel no connection to it. There is a blank numbness where once there were emotions, feelings, an existence of sorts.

It has only just come to me tonight that this is the time when we found out that James wasn’t growing. I knew the dates were approaching, of course. It’s not something I ever forget. But I didn’t put together my crumbling mental state with the time period, for some reason. My therapist says that the body always knows before the mind. And again, she is right. My body remembered first.

These pregnancies have been like twins, since this baby is due mere days before James was born. The two year anniversary of James’s diagnosis approaches. And I am carrying a baby again. This one appears to be healthy. And yet, I feel no sense of connection to her. I have tried. I have tried to feel joy when she kicks and turns within me. I remind myself that I will never be pregnant again. This is the last time. But there is nothing there. No, there is worse than nothing, there is fear and anxiety and 4am panic.

Others tell me that this will be a healing pregnancy. After spending time with and talking to other loss mothers farther along this journey than I, I know there is no real healing. There is only growing around the loss of my son, allowing it to slowly become part of me, a stone that I always carry in my pocket, until at last, I can myself die.

Someone told me today to let myself be open to this baby healing me. And while that’s a fantastic notion, it isn’t realistic. I know it was said with concern for me. What I heard was “it’s time for you to start healing. You’ve mourned enough.”  Seventeen months. It hasn’t even been two years since I did the unthinkable and placed my son’s body in a casket and watched that casket placed into the earth. What is more realistic for this baby’s birth is that I will become even more sleep-deprived, hormonal, and hyper-vigilant, waking at every sound, staring at her breathing through the night, the specter of SIDS haunting my nighttime hours.

I was lying in bed last night, trying to sleep. I now have a terrible cold, and I have developed restless legs syndrome (apparently common in pregnancy). Sleep was not coming. Suddenly, I remembered with shocking vividness what it was like to kiss my son’s warm little clenched fist. I remembered brushing it against my cheek as I cried in the NICU, wondering how long we would have him. And I remembered doing the same thing with his cold, clenched fist, on a freezing, windy day in January, after he had died and before I laid him in his coffin for all time. I felt as if a chasm had opened so wide inside of me that I would fall in and never find my way out. How could this have happened? How can I keep getting up and going on, day after day? Why do other people get to keep their children, and I had to give mine back?

How am I going to make it another 7 weeks and 6 days? I am utterly alone. I know this cry for help, like so many others before it, will go largely unheard by those I need to hear it the most. Everyone has a life. Everyone has stuff going on. But at least I am making it. At least I am here, screaming to the world that nothing is ok when your child dies. Nothing goes back to normal. And pregnancy after loss isn’t some miraculous, healing time but instead a morass of fear, anxiety, broken sleep, and waiting – constant waiting for the other shoe to drop.

This is PTSD

Today has been a strange, emotional day. Both of my daughters have the flu. When I say flu, I don’t mean “stomach flu” or a cold that I’m casually labeling the flu. My eldest tested positive on Monday for flu A, and my second broke with the exact same symptoms 48 hours later. For 3 days, I’ve been in the house, taking care of sick kids, taking care of house items, paying bills, and cleaning. I’ve fretted and worried over them for the past 72 hours, as this is the sickest that I’ve ever seen them in 6 and 4 years respectively.

This kind of intense, housebound parenting doesn’t leave time for anything else, certainly not being open to my grief. Truth be told, I’ve had little time to think of much else but the girls and worrying about not catching the flu from them in my pregnant state.

But today, Jim was off work, and I was able to spend several hours alone. In the space of that aloneness, my grief flowered within me. I felt the rivers of sorrow start to flow again.

Then dinner happened. I went out with a close friend who has a new baby. Said baby was sleeping peacefully in her carseat while her mother and I talked about the struggles of parenting small children, the difficulty of relationships in the face of parenting, and everything else under the sun. I happened to look down during dinner and notice that her baby was sleeping very heavily. She was nestled in a dark blue snowsuit, and I couldn’t see her face well. The light was reflecting on her suit, and she was very still and looked blue to me.

I have PTSD. I don’t say that lightly or casually. PTSD is not a term to be used as a label for anxiety or panic. It is a true disorder caused by a traumatic circumstance. My therapist has diagnosed me with this. I have flashbacks, terrible anxiety, panic attacks, and sometimes I feel confusion when dealing with stressful situations. Further, even before James’s death, I would suddenly startle, terrified that my sleeping children weren’t breathing. Many mothers I know did this with their infants and do it still. The specter of SIDS and accidental suffocation looms large in our minds. So as I glanced down, the combination of a deeply sleeping newborn, the reflection of her blue suit onto her skin, the horrific news stories, and the memory of my own son, limp and blue, overwhelmed me.

I kept my voice level but quietly told my friend this. I said it calmly and without panic, only that I thought, from my angle, her skin looked a little blue-ish. My friend checked her daughter by lightly stroking her nose. No response. She touched her daughter’s hands. No response again. She started to unbuckle her, opened the snowsuit, and still, her little girl didn’t stir. I heard panic in her voice when she said, “Cat, she’s not moving.”

My own heart began to pound, sickeningly fast, and my stomach dropped into my soles. I slid to the edge of my seat, literally picturing doing CPR on my sweet friend’s baby on the top of our table. As she lifted the baby out of the carseat, her eyes flickered open, bright blue, inquisitive, and vaguely annoyed that mom had waken her out of such a deep, contented sleep.

I released a huge sigh of relief. She’d just been sleeping deeply, warm and snug in her carseat. My heart’s staccato booming slowed, and I could feel the shakes wanting to take over my body. Tears rushed to my eyes, and I had to choke them back.

My friend propped her daughter in her lap, now awake and inquisitively checking out her surroundings. I could see the relief and terror mirrored in my friend’s eyes. I felt terrible knowing that I’d caused that fear. My PTSD caused me to panic in a benign situation.

And yet, as I watched her kiss her baby on the head repeatedly, I was taken back to a different room – a room in which I held a chubby boy with a headful of dark hair, kissing him over and over again, knowing that he was in the process of dying. I knew then that there would be no CPR. There would be no second chances. There would be no sighs of relief and exchanged looks of chagrin at an overreaction.

No, there would only be silence, the silence of no oxygen concentrator, no ventilator. Silence occasionally disrupted by the alarmed beeping of an oxygen monitor. There would be no bright-eyed, curious baby in my lap, wondering what all the fuss was about. There would only be the silence of a grave in January.

That was a flashback. I had to hold back the urge to scream, to cry. I had to once again tell myself that yes, Catherine, yes, you did hold one of your children while they died. That did happen to you. You held James, your beloved, only son, the only son that you will ever have, as he died. You would think at 14 months since his death, I would have accepted and internalized this fact, but it still shocks the hell out of me.  As I watched my friend hold her beautiful little girl, her relief a tangible presence in the room, I couldn’t wrap my head around the fact that James is gone. That he died while I held him. He’s really gone forever.

My world has been cracked open. I have seen the heart of all truth, and it is that we are all a mere hairsbreadth from death at all times. Not only has my world cracked open, but my heart has cracked open, as well. I can’t handle anything. I feel as if the world should see this wound, this mortal, gaping, bleeding wound, within me. But it’s invisible to the naked eye, so invisible that others can convince themselves “she’s doing well.”

I’m not well. I am bleeding inside. I will bleed inside until the hairsbreadth between me and death exists no more. No amount of time will heal this wound.

Silent scream

You might have interacted with me today – maybe brought your pet to see me, have her yearly check-up, get her vaccines, or have me check that little lump that popped up on her leg. You might have chatted with me, sharing small bits of the day or an interesting article you read in the paper. You wouldn’t have seen me as I really am. You would have seen the smiling, friendly Dr Ashe. The professional. The veterinarian.

At night, I set an alarm to remind me to go to sleep at 10:30pm. I’ve always been a night owl, but I’ve realized that the late nights and groggy mornings aren’t good for my Circadian rhythm and health. So I’ve been setting an alarm and getting up early, sometime between 6:15 and 8am.

And every night, like clockwork, I fall asleep easily, and then wake around midnight. My chest feels tight, and my heart flutters frantically in my chest, like a butterfly, trapped in cupped hands. I get up. Go to the bathroom. Pace. Do grounding exercises. Five things I can see. Four things I can touch. Three things I can hear. Two things I can smell. One thing I can taste.

And what do I taste? The bitterness of loss. The tang of grief that never leaves my mouth.

What do  I feel? The shock – over and over again – that it is still me. I am still Catherine. I am still here even though my son is not. My son died. That horrific thing that I feared from the moment my first pregnancy test was positive in 2010, that thing happened to me.

At night, alone, I am not Dr Ashe, the veterinarian, working mother of 3. I am a lost soul, wandering my silent house. Nothing has healed. No wounds have closed. My son is still gone, and that fact hits me in the face every single morning when I open my eyes. I still have moments where I flash back to his bedside, to the hours leading up to his death. I have moments where I question every decision – what if, what if, what if.

A year ago, my grief was a black boulder that was crushing me. I could feel it on top of me, suffocating me. Now, it has dispersed into a dark cloud from which rain constantly falls. Every feeling is damp from the constant rain. There are no “good” days anymore. There are okay days – the days when I am patient with the girls, find it in me to play games with them, let them help me cook.  When I don’t yell or lose my temper. Those are the okay days. We won’t talk about the bad days.

I think some people believe I’m “doing better” – that I’m ok. Maybe they think that because I’m working again, or because I seem to be “strong” or have it together all the time. None of it’s true. It’s a very thin veneer on top of the real me – the me that is very much still bleeding, still fighting the quicksand just to stay in place and keep from sinking.

At a year, it feels like grief goes underground – that it must, by some necessity. Other griefs have come along for those I know and love, and mine must sink into the background. It hasn’t for me. It is still my every waking moment. Don’t be fooled by Dr Ashe. She is an excellent actress.

Present

If you’d ask me what I thought about the “mindfulness” movement a few years ago, I am sure I would have rolled my eyes. I roll my eyes at many things. I’m a skeptic and a cynic with a dash of fatalist thrown in as well. Mindfulness sounded to me like something I would lump in with homeopathy and aromatherapy…woo.

As I grow older, and since my son died, I have realized that life is terribly, tragically brief.  I am stumbling through it, on the same path that many of us are on, the path of consumption, the path of mindlessness, the path of constant entertainment, something to fill the mind so that it doesn’t have time to learn to be empty. To be present.

We are a noisy culture. We don’t like mindfulness. We don’t like blank time. We are always going, busy, frantic, texting, messaging, buying, endlessly filling our homes with items that we’re convinced we need to be happy. We stare at our phones endlessly, even when we are with other people whose company we enjoy. We always have one foot in the present and one foot heading out the door to something else. Living in the moment, being present in our surroundings and with our surroundings and with those people surrounding us – it’s not something at which we excel. And we’re getting worse.

I never really thought much about this (which is precisely the problem). I was never taught mindfulness – not by my family, not in school – nowhere was mindfulness ever talked about. Instead, I learned to self-soothe with unhealthy foods. I learned to take the easy route instead of the difficult route. I never considered that I should be mindful of my body, what it could do, and how I should care for it. I never thought about what I put into it or how I treated it. Like most of us, I lose hours at night on social media, staring at Facebook. The night ends with me asking myself what I’ve accomplished. Or if not even accomplished, then what I did in the last few hours that nourished me in some way, shape, or form. The answer is often nothing. We live mindless lives.

Grief is the ultimate exercise in mindfulness. In that tiny silence between heartbeats, in that pause, grief makes itself known. True grief cannot be willed away simply by ignoring it or burying yourself in activity. True grief causes a shift in your perception of the world and your place in it. True grief illuminates the long-neglected corners of our minds. True grief must be seen, heard, and felt. There is no ignoring it or wishing it away. Stuffing it down only leads to grief leaking out, like a corrosive acid, into other aspects of our lives. Grief has been the most illusive teacher in my life. To love greatly, you must be willing to suffer greatly. It is against our nature to choose to allow the suffering, and so again, we turn from mindfulness into mindlessness.

Being mindful takes effort – enormous effort. It takes recognizing the frantic pace of our lives and the often almost inexplicable sadness, the emptiness, that accompanies it. I have never learned to be mindful, to be present, but I am trying now. And while I learn it, I have to teach it to my children somehow.

I need to build sanctuary – both within and without. The modern world makes this difficult. When did social media become such an integral part of my daily existence? More importantly, why? We lack the village anymore, but rather than build one, we make one on-line, further disconnecting ourselves from meaningful human interaction.

It doesn’t seem like it should be hard, does it? And yet, being present, in the moment, and thinking about our decisions is the hardest thing that I’ve ever done. Why am I eating this? Does this nourish me? Why am I buying this? Do I need it or does it fulfill some desire to think of something – anything – other than my aching sadness for my son? Why am I checking my phone for the 10th time this hour? Do I really think I’ve missed something that vital – or again, am I chasing mindlessness?  These questions are becoming increasingly easy to answer as I grow and stretch in the agony of grief. These are not muscles that I’ve ever used before, and like any muscles, they must be warmed up, they must be toned, and the doing of such is painful. But is IS worth doing.

 

“Opening”

All day, I’ve thought about what I would write. One year ago, I lived through every parents’ worst nightmare. I’m still alive. He still isn’t. I’ve been reliving those days, sifting through the big box under my bed. It’s full of cards and trinkets and mementos of his life.   I’ve been watching videos of him and looking at pictures.

The strangest questions have come to mind. Who put our children to bed the night he died? I don’t remember. Did I sleep through the night or did I wake and stare at him, there in his crib next to us? Who put away our Christmas tree? I don’t remember it being there, the morning we woke up for his visitation, but neither do I remember putting it away. It was there on New Year’s Eve, as I can see it in the pictures. Did I eat anything that night? Did Jim? What time did I wake up that next morning? Did I remember when I woke up that he was dead, or did I already know?

This first year has passed in a blur of time. I’ve tried to honor my son, and I’ve tried to honor my grief. Lately though, I feel as if I’ve been hiding from it more and more. Submerging myself in activity, sometimes mindless and frantic. When I do this, I find my grief coming out in unexpected ways – in whiplashes of emotion towards strangers, towards my children, and towards Jim. In this year, I’ve learned that grief will not be ignored. Grief must be felt, must be experienced, and must be lived through. There’s no “keeping busy” until it goes away. True grief never goes away.

As a culture, we don’t want to make room for the hard feelings. We want to believe that life is mostly happy with moments of sadness. Instead, James has shown me that love and grief are two sides of the same coin. Grief is woven into the tapestry of our lives. We will all love, and we will all lose, and we will all grieve. Someone told me something very wise – a mantra for each day, if you will. “Life is hard, but not today.” Except today, today is hard. But it’s not quite as hard as one year ago.

Lately, I’ve been thinking about our decisions for James – the decision to have the tracheostomy, that we didn’t pursue heart surgery as he grew stronger and bigger, of all the little things that we had to decide on a daily basis. It occurred to me that I’ve only really considered that we made a mistake. I haven’t really allowed myself to consider that there was no mistake to be made, that we could only make a decision for him out of love and care. I have to remind myself that he wasn’t just cruising along and doing great before we took him off the ventilator. He was oxygen dependent. He was fed through a tube. He was on 13 medications just to keep his heart from failing. His heart needed major surgical repair that he might or might not have survived. It could go either way.

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For us, it was worth it – the sleepless nights, the endless alarms, the constant low grade terror of losing him. We would have kept him with us forever. But for him…well, we couldn’t ask him. So we did the best we could. And we loved him. We love him still. We will love him for always.

When my cousin drowned at just shy of 2 years of age, I remember telling my grandfather that in his short life, my cousin knew more love than many children ever experience. Some children live short, brutal lives of neglect and abuse and never know a mother’s loving embrace. My cousin was loved. He is still loved. James was loved, and he will always be loved. The quantity of his life paled in comparison to the quality of his five months.

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I think, someday, that I will be able to be really believe that we did our best and that we didn’t fail him. I’m not there yet, but I’m starting to think that I could be. I’ve allowed myself to think of names for this baby. I still fear trying to live with the wild love for a newborn nestled against the bleeding of my broken heart and my yearning for James. In fact, I’m terrified. How does one grieve like this and parent a newborn? I can barely parent the children I already have at the moment, truth be told. But that is a thought for another day.

I’ve been trying to think of how to sum up James’s life -how I remember him and his time here. Today, my best friend sent me a gift. She captured so perfectly my son’s essence. She titled it “Opening.” I see the burning of the rocket, leaving earth, reaching towards the sky, straining, the quaking and tremoring, the shock of the ride – all noise and commotion and wild exhilaration, and then, bursting through the opening into the perfect silence of space, entering into that holy vacuum. Where we all arise, and where we will all return. That was my son’s life.

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Unhealed wounds

Let’s talk about conceiving after the death of your child.

At this point, a year from his death, the world has returned to its rhythms. A year seems so terribly long ago to those not grieving. My grief isn’t something I wear like a badge on my sleeve. It’s invisible. If I go to the store, the cashier doesn’t look at my face and see “bereaved mother” stamped there. To the external world, to those that don’t know me, I look like everyone else.

Even to those who know me, a year is a long time. Surely, the grief is beginning to abate? Surely now, the good days at least equal the bad? Surely, there are moments of joy?

And yet, all that really exists is the slow swimming towards consciousness each morning, my soul like a lead weight, trying to pull me back towards sleep – because to wake is to face the demon that haunts my days. To wake is to acknowledge that here I am, forced to do it all over again … and again … and again.

To wake is to re-enter the world, to push myself out into that macrocosm of humanity, to smile, to move my limbs, to pretend that I am normal. And yet, every moment of normalcy, every thing that reminds me of the Before, once that ends, the rush of sorrow, of loss, of missing, rushes back in again, and I am leveled. I can’t be normal. I can only pretend.

My whole being cries out for my son. I see pictures, and I am aghast that it has been nearly a year since I held him, since he was warm and alive. There is no salve to soothe this pain.

In the midst of this, to find out that life is growing anew within me – unplanned, unprepared for, completely unexpected – what words can capture those emotions? I had grown accustomed to the idea, somewhat, of being a mother to three, one no longer living. And here now, this life within me, a beloved intruder in what was once the sacred home of my son.

To have to tell others this news – when I have known for 5 weeks, have seen that tiny, furious hummingbird heart on the ultrasound, the small life that has sprung up in this season of drought – it has plagued me. How to tell people? How to accept the smiles, the congratulations, the well-meaning joy of others – when there is no joy within me?

This baby is not a balm to my fragmented soul. I grieve, every second of every day, and to see the excitement in others causes a sting of pain. My James is gone, and he cannot be replaced. I am not magically happier, more contented, less grief-stricken, for this life growing within me.

I want to believe that I can feel joy again. I want to believe that when I see this baby’s face, I will smile and weep happy tears. But I fear that I will feel nothing. I sometimes think that James’s departure was also the departure of my joy.

To face it all again, the fatigue, the diabetes, a likely c-section at 39 weeks, and all the other slings and arrows of pregnancy, fills me with dread.

And yet, I haven’t explained it all. There is so much more that I cannot even find the words. Always before, as soon as I knew, as soon as that second line popped up, I shared the news with everyone in my life. Not because I was naive enough to think that nothing bad could ever happen, but because I love life, and I celebrate it, whenever it begins or ends. This time, I have waited, far longer than before, to make the news public. Not for fear of “something happening,” but because I cower before the glowing smiles and warm excitement of well-meaning friends and family.

Yet, I know that there is beauty in pain. It is a harsh, stark beauty, and one that I would gratefully return to the giver, if I had the choice. I do not have that choice, and I can’t refuse to see it. I know there will be beauty here too, when I am ready.

I’m just not ready. All I can see now are two bright blue eyes, a thatch of wild-brown hair, rosebud lips, small clenched hands, and rolls of elbow fat. How I miss him. Nothing can undo his loss. Nothing can fill this abyss of sadness. These wounds have not healed. No child can anneal the edges for me. And to tell others is to let them believe that, for a moment, I might be happy again. And how could this be?

 

Happy holidays.

Today wasn’t all merriment and festivity. It was a hard day. It was our first Christmas without James. It’s funny to think that I had 36 Christmases without him and only one with him, and it makes such a difference. But such is life. The time someone is with us has no bearing on how much or little we miss them. He was here but five months, and yet, he changed our lives forever. He is with us forever.

My sweet daughters, of their own accord, picked out gifts for him. Both are intended to grace his grave. My eldest chose hers at the “Reindeer Shop” at school, without any guidance. My middle went with her daddy to select a (beautiful) remembrance.

We spent the day at home. Daddy made breakfast for his girls. I built a fire and lazed near it. We opened stockings and presents. In the emotional days leading up to Christmas, I completely blanked on the need to have a meal plan for Christmas Day. I had no turkey, no stuffing, no nothing.

Feeling blank and bereft and empty, after the presents, I lay down for a long winter’s nap. Jim patiently put together more than 1,000 Legos with Evaline and Hazel. When I woke up, he had made homemade chicken tenders, mashed potatoes, corn on the cob, green beans, and salad. It was better than any previous Christmas meal I’ve ever had. He saved Christmas dinner.

Now I sit here and stare into the fire, and I miss my sweet son. I try not to question our decisions for him. I try to remember that everything we did, we did because we loved him unconditionally. But it’s so hard. It’s hard to see other trisomy 18 babies going on, celebrating Christmas with their families. Why not us? Why not him? It’s hard to be normal, when, less than a year ago, I held my son while he died. There are certain scars that never heal.

Every moment, I miss him. I am always aware of his absence, even when I am not directly thinking about him. I hope one day, this wound will start to heal, but it hasn’t yet. And so I am grateful for, if nothing else, that this holiday has been a quiet one.KJJEwUNCS9CMTeJ2hRwUzgfullsizeoutput_180fUJt74X6ESAWAjojxFLGpaQCbnpLYc5SIijZMhHkgDXpw%HBQEm4eQqCMeahjfc2UagGTyQ3CFNRnaJbWIaraKYnwfullsizeoutput_1809

The beginning of the end.

It has begun – a mental countdown to the day my son took his last breath in my arms. It’s replay time! Time to replay every decision leading up to his death, was it right, was it wrong, was there even a right or a wrong? Does it matter now? The decision is made. His life has ended. Monday morning quarterbacking changes nothing.

I want to believe that some day, I’m going to feel better. Someday, I am going to wake up, and there won’t be a tremendous weight on my chest. I’ll be able to draw a deep breath. I’ll be able to laugh again – to really, really laugh. I’ll look forward to the holidays again rather than just hoping and praying that I’ll wake up tomorrow, and it will be January 15 or so. Right now, it feels like the days before me are endless. It doesn’t matter how many there are – one day or 6,000 – it seems like an eternity.

It’s weird to be so isolated from most of the rest of the world. I look at other mothers, and I think that surely, they must get it. They must understand, deep down, what it is like to lose a child. Surely. In their deepest, blackest nightmares, surely they dreamed of this terror? In their moments of worst anxiety, didn’t they picture what it must feel like to never hold your baby again? To never breathe in that baby smell? To never hear that tiny voice? To never touch those tiny fingers?

And then I remember that even though they might have imagined it, might have let themselves into that dark pit of despair for just a moment, that it was precisely that – a moment. And then the mind, always protecting itself, pulls a curtain over that vision, shrouding it in mystery – for it is a mystery, this kind of drowning, numbing, horrible grief – to those who haven’t suffered it.

Can I just be honest for a second and tell it like it is?

We are never going back to who we were before this happened. We are never going to be “better.” We are never going to “move on.” Yes. Our lives will move forwards. Nature’s imperative insists that we must. We cannot stay frozen in time. And yet, we have seen something that most people haven’t (not yet) – the truth behind this curtain of life. We have seen that life is fragile, delicate, a flickering candle flame that can be snuffed out without a moment’s notice. We understand in a way that others don’t, that this life is not guaranteed to any of us. None of us are golden. None of us are special or protected.

Once those things are seen, they cannot be unseen. The mundane, the frivolous, the petty, now they only serve to anger us, because we can’t see how people spend their time worrying about them. We are mystified by how the world just continues on around us, how relationships that always frustrated us aren’t magically fixed by this loss. We feel guilty sometimes for our grief, and we (foolishly) put others’ needs before our own when we are floundering in a sea of sadness.

So, I am going to be real with you right now.

Most of us in deep grief don’t enjoy or look forward to the holidays. We muddle through them as best we can, fulfilling obligations where we can, hoping against hope that we will wake up and magically, it will be the middle of January, all the while, knowing it won’t.  We will be like this for a long, long time. Many years, I suspect, will pass me by before I can find joy in this time of year again.

Don’t give us platitudes. Don’t tell us to be grateful for the children that we do have and to find joy in the season for them. We try. And when we fail, that failure creeps into our core and sticks there. Don’t be offended if we turn down invitations to parties or family gatherings. And if we do show up, don’t avoid the topic of our loss. If you ask us how we are doing, then be prepared to really hear how we are doing. It’s not likely to be cheerful, and I guarantee that it will be hard and there will likely be tears. But there are worse things in life than tears.

If we slip away from the gathering, don’t be offended and don’t come look for us. At this time of year, amidst all of the merciless cheeriness, we are nursing wounds that the holidays re-open. Give us space. Even hold space for us. Don’t try to fix us. Don’t ask if we’re still seeing a counselor, if we’re still on an anti-depressant, if we’ve read this book or that book. You can’t fix us. There is no fix for this pain. Just be there with us, acknowledge our loss, and let us be.

You can say things like “I cry for James too” or “I miss him too.” Or “I’m sorry. I know how hard this time of year must be. What can I do?” Better yet – don’t ask. Just do. Show up, take my kids for the day, let me nap, let me cry, let me break Goodwill plates with a baseball bat. Cook me dinner. And if you’re reading this and you only know me vaguely, then do it for someone in your life that is struggling – with grief, with loss, with illness, with postpartum depression, with loneliness. I have found that one way to temporarily leave this hellish pit is to help someone else. It’s only a temporary reprieve, but it’s one way that James lives on and that I keep his gifts in my heart.

With that, I will leave you. My thoughts, as always, unfiltered and uncensored, for the most part.