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


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.


Mothers, I am your worst nightmare, and I am your talisman against the dark. Because I sit here, because you know me, because we have spoken, and I have told you James’s story, you feel protected. His death wards off evil. It keeps the Reaper from your doorstep.


Sometimes, it’s how I feel – as if my friends feel protected from the most horrific loss that we can imagine just by association with me. I feel like they speak in hushed whispers when I’m around – “that’s her. My friend. Her baby died.” I feel like I’m moving through life alone, attuned to this staggering loss within me, invisible to the naked eye. On the surface, level, smooth. The giant scar in place of my heart is hidden.

Humans can adapt to anything. This is what I am learning.

I was musing aloud with a friend tonight. She’s expecting a baby. We were walking in a beautiful garden, enjoying this unseasonably cool August and the impending rain. We were talking about suicide after a child dies. We were talking about sad things that no one wants to talk about. She mentioned in passing that she’d made a statement to the universe – that just because she is expecting another child doesn’t mean that the universe can “have” her other daughter. I retorted that unfortunately, the universe doesn’t care. There is no protection. There is no talisman. There is only the whim of an uncaring universe.

I cannot believe that one of my children died. You’d think that almost 8 months after the fact, I would be able to accept that yes, it DID happen to me. My worst nightmare DID come to pass. My child did indeed die in my arms. And yet, I still…I just can’t sometimes.

I was in Trader Joe’s yesterday. It was a day of overwhelming sorrow, grief, anger. I was biting back a scream most of the day. The cashier asked me, in the overly friendly, eager way of Trader Joe’s cashiers, how my day was going. I looked him dead in the eye and said “I’m barely holding it together.” He looked slightly offended and didn’t really reply. After that interaction, I got lost in thought. I realized that I’ve joined a very special club – a terrible club. A club of mothers that have outlived their children. It stretches back to the dawn of time. Somehow, in that moment, in a modern day grocery store, I felt my soul reach out and touch those other mothers, all of them in their grief and anguish.

Child loss is such a unique agony. It’s the grief of what could have been. It’s the grief of what if. It’s the grief of never to be. It’s the knowledge that as a mother, you failed in the most important task imparted to you – caring for your child. Protecting your child. Dying before your child.

I am the talisman against the dark. Except there is no talisman.

The birthday. Grace. What is lost.


I am 4 days overdue in writing about James’s birthday. It’s mostly because I didn’t know what to say about the day – August 1. He should be here, and he’s not. He should be one year old. But he is frozen forever as a 5 month old. It’s hard to reconcile an event like his birth with his death.

Despite that, it was a relatively lovely day. We had a potluck meal, and people really turned out with the food. I have never had an event before where I wasn’t solely in charge of food, and it was a little (but only a little) nerve-wracking. I needn’t have worried. There was plenty to go around.

We broke bread together and remembered James. We finished his gravesite and placed his headstone the day prior. That was bitter. Seeing his name and the dates of his short life engraved in stone somehow made his life and death seem more final. It sounds ridiculous, because it’s been final since January 2, 2017. But there it is. Grief often doesn’t make much sense.

After dinner, we released butterflies at his gravesite after saying some words about him. I wasn’t particularly eloquent with what I said. I tried to write something, but the writing wasn’t flowing. I didn’t say what I wanted to convey. It was that our children carry our dreams. They are our dreams. We look ahead, at all the hopes that we have for them, and sometimes, when looking ahead, we forget to look right in front of us. Jim taught me to be in the moment with James, because we didn’t know how many moments that we would have. That has led to a greater understanding that none of us know how many moments we have. Just because we’re healthy now doesn’t mean that it will always be true. My uncle didn’t expect to drive out his driveway that day in March and die in a horrific car accident.

Live in the moment. Love those around you. Forgive easily. Love easily. Extend grace when you would otherwise be hurt or judge or be harsh. Do kind things for others. Think of others before yourself. These are the lessons my son’s life and death teach me everyday. Am I good at it all the time? No. I still have the petty hurt feelings, the emotions that well up unexpectedly, the desire to lash out when I perceive that I’ve been wronged. I’m also much more likely to try and see conflicts from the other perspective, to let my cooler head prevail, to realize that most things don’t matter so much.

James also taught me that people don’t want to be fixed. People don’t want advice. People don’t want to be told what to do. I once believed that if people just listened to me – I had the answers. I could help them make their lives better, happier. I’m not sure where this hubris originated, but it’s been a part of me for a long time. Perhaps it is genetic.

Since James has died, I’ve realized that what people want when they are hurting is to be heard. They want an ear and a shoulder. They want a sympathetic nod, a gentle touch on the shoulder. They want support. That is what I want. I want to talk about James freely. I want people to ask about him. I want them to listen. I can’t make anyone understand this pain. The only way to understand it is to suffer through it, and I wish that on absolutely no one. So in lieu of understanding, I ask for a gentle ear. And it’s what I am trying to give to others that labor under different griefs.

Today, I had a heartbreaking glimpse of what we lost. We took our semi-nightly amble around the neighborhood, and in doing so, we came across our neighbor and her 1 year old son. He is just a few months older than James would be. He’s walking in that uncertain way of 1 year olds – excited, mostly confident, with just a tinge of fear and hesitation. The girls ran up to him. They made faces at him and silly noises. Evaline helped him up when he fell. At one point, they were standing around him, forming a little circle, holding hands. For a moment, I saw James there instead of our neighbor’s son. It was a knife into my tender heart.

There is so much pain and beauty wrapped up in the package that is James Julian. He brought me so much. He gave me so much. He lets me give more to others. And yet, he’s gone. Did he do – in 5 months – what most of us can’t accomplish in a lifetime. Is that why it was so brief? He came here, he imparted his gifts to his family, and then he went away? I like to think of it that way sometimes, when the grief threatens to drown me.

For the past few days, I’ve been trying to cocoon at home as much as possible. I’m not planning things to do or rushing around. I’m sitting on the porch with my coffee, listening to the girls play in the yard, watering my plants, weeding my garden, doing the NYT crossword puzzle with my mom, and enjoying this absolutely stunning August weather. I am letting my mind rest. I am in the trough of the wave now, for a while. The day of his birth has passed. But the wave always builds. And it always swamps me again. And so now, I wait, and I rest, and I prepare. Because sooner or later, I’ll nearly drown again.


The Upside Down

For the past 7 months, I’ve been trying to think of a way to describe what living with this kind of grief is like. If you’re a mother or father, I know you’ve imagined what losing a child is like. I know you’ve seen it play out in your head, the accident or illness that takes your child’s life unexpectedly and then the aftermath. I know you’ve visualized what it’s like to hold your child lifeless in your arms, knowing that you will never see their bright eyes again or hear that sweet, sweet voice. I know because once, I was that mother. I, too, envisioned what losing a child would be like – long before I knew that it would indeed happen to me.

What you probably visualized is the acute grief – the shock, the horror, the anger, the disbelief that comes immediately after the loss. You’ve imagined wailing, gasping, screaming, staying in bed all day, not eating, not talking to anyone, ceasing to function for a time. Maybe you thought that all days would be like that until one day you woke up and were “better.”

That’s not grief. That’s not grief at all. Yes, it may be the early days, but once that first shock is past, grief is something else entirely.

Grief is walking around with a piece of you missing. It’s a hole in the center of things.  It’s not wailing and sobbing every moment of the day. It’s getting up and doing the things that need to be done – feeding your children, cooking dinner, doing the laundry, walking the dog. It’s doing all of it with a lingering gray cloud at the periphery of your vision. No matter how beautiful the day is, there always seem to be clouds.

It’s like living in the Upside Down. Everything is in its place. You go about your life like normal. You do the “normal” things that you’re supposed to do. But darkness surrounds you. There is something off-kilter about the world. You always feel that wrongness deep in your bones, down to the very marrow.

See now, I’ve brushed up against the truth of life. I’ve seen behind the curtain. The wizard is just a wizened little old man with no magic. We’re all fragile, inches from death at any time. We feel grandiose. We feel safe. We are not.

I don’t wail every day. I don’t tear out my hair. I quietly go about my life. I live in the face of staggering loss. I have to, because there is no alternative. And yet, nothing is right. Grief at this stage feels like a shocking numbness.  It’s an out-of-body experience. It’s a desire to stay in bed and sleep for hours – until the clock passes noon. It’s floating above yourself and feeling no true joy, no true happiness, nothing but a blankness, a yearning for the days to pass until you too can go through that curtain.

Grief is nothing like you think.

Love times a thousand.


As James’s first birthday approaches, my heart is breaking all over again. It feels in some ways as if he just died.  Everything is raw and agonizingly painful.  I was at the library yesterday with the girls. They were building Legos, and I was watching. A little boy kept crawling over to me and smiling. I asked his mother how old he was. She said that he would turn one next week. My face crumpled. I felt it happen – that crumpling was physical. Tears started to leak out. She was far enough away (catching said crawler from escaping) that she didn’t see it. If she did see the tears, she pretended otherwise. I sat against the wall and let them fall quietly. It occurred to me that I should get up and go to the bathroom or somewhere else private. Then I decided that I didn’t care and just let them fall.

I would like this to be an encouraging post. I would like to talk about the lessons that my son taught me over the past year. Unfortunately, the grief is too deep right now. As many wonderful things as my love for James taught me, it has also taught me about the permanence and omnipresence of grief.

Grief is unlike any other emotion. It is love magnified a thousand times by absence. It is the strongest love that you can feel, and it has nowhere to go. The object of that love is no longer here. Grief is love that is lost and love that is searching. Grief is calling out into darkness, desperately hoping for an answer that will never come.

Grief must be felt to the fullest. Grief cannot be ignored. Grief cannot be buried. Grief cannot be silenced by going and doing and being. Grief must be seen and felt and touched. It must be turned over and over again by the mind, studied, examined, experienced, and at last perhaps, understood.

Those who haven’t suffered a devastating loss don’t understand this. They see grief as having a timeline. At X point, you will feel this. At Y point, you will feel better. At Z point, you will be over the loss.

Grief has no time table. Grief answers to no one – not even the griever. It comes when it will and it leaves when it will. It devastates without warning.

For the past few days, I’ve stayed at home as much as possible – insular. Anything on my calendar that I didn’t have to do, I didn’t. The only things that I have done are garden, talk to my daughters and husband, and fulfill obligations. I’ve also slept an inordinate amount. The point of leaving my job was to focus on my grieving, to start my healing process, to try to find a way back to the light. I’ve filled my time though – writing, speaking, volunteering, doing. Even though these things are all linked to James and all of them are because of him, they also detract from my journey with grief.

The only way to the other side of grief is through it. There’s no ignoring it. There’s no going around it or over it. You must go through the middle of the storm before you can come out on the other side.

Right now, I am drowning in the rain. I believe, somehow, that there must be a rainbow on the other side. There will be sun again. I see glimpses of it here and there. I see that glow in my daughters’ smiles. I feel it in the love that we shared with James, with the love that we still share with so many others because of him. I have hope even here in the blackness of my grief. Hope that one day, I can look back and know that we did all that we could for him, that we loved him with every inch of our souls, and that when he was tired, we listened and let him be free of his broken body.

Mommy loves you, James.

We love you, Charlie Gard, though we’ve never met.


I’ve tried not to follow this story. In the fresh hell of my own grief, I can only handle so much external sorrow. It’s hard not to be aware of Charlie Gard though. And now today, his parents have decided to turn off life support and let him go.

I’m not here to write about socialized medicine. I’m not here to talk about experimental drugs, mitochondrial disease, and parental rights. I’m here to simply say this…anyone who thinks that they know what they would do in that situation is foolish. I’ve seen the mud-slinging, the casual cruelty about his parents and their prolongation of Charlie’s life.  I’ve seen the judgment and I’ve heard the sneers.

I’ll just tell you these things.

Until you sleep curled around your dying child in a hospital bed, every bone and muscle crying out for a good night’s rest, you have no idea. Until you hold your dying child’s hand, feeling the warmth that you know will seep away as soon as that machine is turned off, you have no idea. Until you realize that you are looking into your child’s eyes for the very last time, until you have to say the words to the doctors – the words that will end your son’s short life, you. have. no. idea.

Until they come into your room with syringes to “make your son comfortable” as he slips away, and you are fighting the impulse to start screaming over and over and over, and the panic is creeping into your very core because YOUR SON IS GOING TO DIE RIGHT THEN, you have no idea.

Until you close your eyes every.single.night. and relive those last, precious hours, until you watch the videos of his last day over and over and sob yourself to sleep because you miss your baby so desperately, you have no idea.

Until the day I die, I will question. Until the day I die, I will wonder what my son would look like now. Until the day I die, I will wonder what if, what if, what if.

For those in the medical field, often the answers seem black and white. I know this. I was once one of those black and white people. I am no longer that person. To those who love their children, the answers are always shades of gray, the future shadowy, unforeseeable. There is always the what if. The guilt that we carry as a result of our decision will never go away.

Look at the picture I put with this post. Do you see that? That’s my baby boy as he died. Do you see the agony imprinted there on my face? It’s always with me. It’s ALWAYS WITH ME.

To the Gard family, I am so, so sorry that you are faced with this impossible decision. I am so sorry that you have to say goodbye to your beloved child. I have been there, and I know the agony of the decision, and the agony of carrying that decision every day since. I am sorry, so deeply, deeply sorry.

Rest, little Charlie. Find James and be his friend.

False face.


A fellow trisomy loss mother described herself as an “alien” today. It resonated with me. Ever since James died, I’ve felt like I’m standing outside of my life, observing it but not really participating. It’s as if this person, the one that is doing the care packages, the Cuddle Cots, the scholarships, going out with friends and family, reading books, hosting a radio show – she’s one Catherine – the fake Catherine. The other Catherine is the one really running things, and she’s asleep at the controls.

Everyone told me that the six month anniversary is when the wheels come off the bus. For me, it’s been closer to the seventh month. For some reason, it’s just hitting me again, like a load of bricks, that my son is dead. He is gone, forever. That little bright-eyed boy that I watch in the videos, he isn’t here anymore. I’m sure it’s related to his birthday. It’s also related to the fact that we finalized his headstone a couple of days ago and are working on his grave in preparation for his upcoming celebration of life. It’s reopening all these barely scabbed over wounds.

This time, last year, I was miserably hot and pregnant, scared, uncertain. Now, almost a year later, I’m here with no baby. Life goes on. The world goes on. But I’m stuck. Waiting somehow to feel better.

I remember after James’s diagnosis but before his death, I’d see pictures of other mothers that had lost children. They looked – still do – so normal. It seems like once you suffer such a horrifying loss, there should be some outward sign of it – a mark. Instead, you see smiling faces. You see “normal.” But we’re not normal. We are far from it. We’ve simply divided ourselves into two people – the person that the world sees and the alien existing within us.

Today is the birthday of a sweet little boy named Jackson. He too suffered from trisomy 18. Unlike James, he did not survive to be born, though he was at 37 weeks when he succumbed. His mother, Nicole, delivered him and held him and told him goodbye. It wasn’t enough time. It’s never, ever enough. We should outlive our children. They should never die before us. It’s so unnatural that the mind doesn’t know how to cope with it. Jackson’s mom goes on. She has no choice. I see her pictures on Facebook. I see her smiling at the world. But her eyes give her away.

This grief is bone-deep. It’s soaked into the marrow of our being.

When you’re feeling annoyed by the small grievances of life, when your three year old talks back again, when you want to yell because you’re just irritated, the house is messy, the car needs an oil change…stop and remember James and remember Jackson. Remember that none of us are guaranteed anything. Nothing. Not a single second of our lives is promised. Remember that and let the small things go. And think about our babies and think about us, here, missing them and hurting, even though the face that we show to the world may be a brave one. That’s a false face.

We love love you, Jackson. We remember you. We remember you and your family too, Nicole.


The path.

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.