When I compare
What I have lost with what I have gained,
What I have missed with what attained,
Little room do I find for pride.
I am aware
How many days have been idly spent;
How like an arrow the good intent
Has fallen short or been turned aside.
But who shall dare
To measure loss and gain in this wise?
Defeat may be victory in disguise;
The lowest ebb is the turn of the tide.
James taught me the truth of Longfellow’s words. I spent the last 37 years of my life serving myself and my needs. Since his death, every day, I try to get up with a heart for others – no matter what the circumstances. Recently, I’ve had some personal challenges with people aside from the death of my beloved son. Tomorrow morning, I will wake up and start over – like every day – asking what can I do to make someone else’s day a little better – to bring a smile to someone who may be suffering. “The lowest ebb is the turn of the tide.”
Shine a light into someone’s day tomorrow. Just because you can.
Mommy loves you, James. And I won’t forget your lessons.
I dreamed of my sweet boy, and for once, it wasn’t a terribly sad dream.
My dream started in space. I was with 2 other people. We were holding hands in a circle, on some grand mission to the stars. Our ship was going to explode at any moment, and we knew it. I sensed the confluence of time. I knew that we were alive, but we were also already dead. I tried to reassure my crewmates of this – that we were ok, because we’d already died. One of the other women was terrified that death was imminent. But I was calm. I knew in my heart that all time is one in the universe and that we’d been born, lived, and died already. I wasn’t scared. I wondered what would happen after death. Would I cease to exist forever? Would I move to some other plane of existence?
And then the ship exploded. My spirit rocketed through the cosmos. It wasn’t my body – only my consciousness – traveling at light speed. And then I opened my eyes, and I was somewhere, in a big house, surrounded by snow covered mountain peaks. The sky was black and lit with jeweled stars. The moon was huge and bathed the mountains in white light. I was alive, but where was I?
In the blink of an eye, it was day, and I was stumbling into a bedroom where my husband slept. I sat beside him on the bed, and he awoke. I looked at the clock; it was 1pm. I leapt from the bed shouting – “The baby hasn’t woken us up.” I felt a sick dread in my heart, a clammy hand squeezing the vital force out of me. I knew that James had died in his sleep, and we had somehow missed it.
We ran to another room, and there he was, sleeping in a bed. It wasn’t a crib or cosleeper. It was an adult sized bed – like he was always in when we stayed in the PICU. We sat with him on the bed, so relieved. He was alive. He was ok.
And then I woke up. There was no moment of realization that it was a dream. There was no split second where I thought it was real, and he was still here with us. I knew from the moment the dream ended and the second before I opened my eyes that he was gone still, that he is gone for all time.
Which is worse? The sweetness of a dream where my son lives – having a moment on waking where I forget that he has died? And then the agony of remembering that he is gone? Or is it better that I just always know?
I have been spiraling into a dark hole for the past few days. Today, I lost my mind with rage. I lashed out terribly at a person that I loved. There is a tight, coiled scream within me that needs to find expression. I am angry. I am so, so angry – full of rage that my son died. My son – that I loved more than words could ever capture – his body rots in the ground behind my house.
Today, I lay on my bed, and I thought of ways to get that scream out – to release the anger in a physical way. It occurred to me that I should cut myself. Nothing major. I am not suicidal. It just seemed fitting, to take a blade and slowly, slowly make small slices in my forearms. It’s as if I believed that the fury, the dark rage, could slowly ooze out of my body through this conduit.
I didn’t do it. I’m far too practical. I know that I have to go to work. I might need to do surgery, which would require me scrubbing my arms with a stiff, bristly brush and sponge. It would be hard to cover self wounds in that situation. It would also not accomplish what I hope it would. I know that. And I know that self destructive behaviors don’t accomplish anything. Even in grief, I remain tethered to earth, to society, to expectations, to responsibilities. As hard as it is, I keep getting up, going to work, doing the things that are expected of me.
I will continue to do these things until hopefully, one day, I can remember my sweet boy and laugh or smile without that horrible, horrible knifing pain in my heart.
The last few days have been especially hard. I’m not sure why. Perhaps because this week marks my first “official” week back as a full-time doctor. Even though the previous week, I worked full-time hours, they were relief shifts, and it wasn’t official. Now I’ve signed my new contract for the year, and I’m back to work. Life moves on. This time, last year, I was complaining about my raging appetite and my sore hips, and the inconveniences of pregnancy. This year, you have been born, you have been loved, and you have died. I am still at work…as if you never were.
It’s hard. It’s all hard. Life used to sit so lightly on my shoulders. Everything was easy.
I came home tonight, and it was raining. I am sitting here now, on my bed, listening to the rain. You’re out there, in the chill dark, alone. No one holding you, no one stroking your head, no one playing you music and singing to you. No one telling you how much you are loved.
I know that you’re not there anymore. That is your body out there in the earth. What made you James is gone – out into the cosmos – rejoined the stars from whence we sprang. I sometimes wish that I could join you.
We took your big sister to register for kindergarten today. I remembered what the first day of school was like when I was young – so much excitement. So many new school supplies. Your sister is going to go to kindergarten. When did that happen? Time moves too fast – like lightning. You were here and then you were gone. Did I savor it enough? Did I kiss you enough? Did I tell you that I loved you a million and one times? Did we sing enough songs? Did I hold you as much as I could?
I remember the days right after you were born. That first night, so scared, so many emotions spilling out of me. I was so frightened. What if you died? How would I survive? (And yet, I did. Here I am. Surviving). The fear subsiding somewhat in the days after – becoming a low grade anxiety mixed with my overwhelming love for your tiny, fragile body and your huge spirit- spending all day with you in the NICU. Listening to songs with you, gazing out the window at the gorgeous mountains. Certain songs can take me back to those days in a heartbeat.
How can you be gone? How can all this time have passed? It’s been almost four months since the absolute worst day of my life. Four. Months.
I want to go back in time, hold you once more. Whisper words of love into your wild hair, plant another kiss on your forehead, see your bright eyes looking into mine.
This week, another trisomy mother was told that her baby would be a “vegetable” – that her sweet baby wouldn’t have the cognitive ability to recognize her mother. It makes me smolder with rage. You were not a vegetable. You knew your mommy and your daddy beyond any doubt. I can only hope that you knew our love as well as you knew our faces – that you felt the sunshine of it all around you.
I sat down tonight to write something specific, something meaningful, but all I have today is sadness, little boy. I ache to hold you in my arms. I ache to hear your voice – to REALLY hear it – not just watch the videos of you over and over.
I’ve been feeling guilt lately. Since you died, I’ve realized how “easy” it was to have 2 healthy little girls. Back before you were born, I thought that parenting was hard. I thought it was hard sometimes to go places, to do things. Then you were born, and I realized what hard really meant. I remember taking you places – what a big deal it was, how anxious I would get. I remember being afraid that I’d mess up your oxygen tank or your regulator or your ventilator. It was such a big deal to take you to the work Christmas party, but I am so glad that we did.
I remember an anxiety attack of monumental proportions because I was trying to do everything for you – get all of your medications filled (hard because it was often 2-3 different pharmacies), make sure we were coupaging you every 6-8 hours, making sure your medications were given on time and correctly, scheduling your nurses, your therapies, your doctor’s visits. I was so afraid that I was going to mess something up.
I feel bad for thinking it’s easy now and that you made it hard. I would give anything to have you back, no matter how hard it would be. I’m not a selfless person – not even remotely close…but I would be selfless for you. And yet, I can’t help but sometimes feel relief. Relief that you aren’t having to work so hard just to breathe, to just exist. I watch videos of you, and how hard you worked, every day, to just do the normal things like breathe and digest food and make baby noises and hold your head up. It makes my heart hurt.
But then again, relief isn’t happiness. Maybe I am just appreciating life more, appreciating the gifts of my circumstances, appreciating the time in which I live, the amenities that are such common luxuries, the medical care that helped give us 5 wonderful months with you.
Life is not fair. It’s not fair at all. Tonight, I cried in bed, and I thought about you and about all of the other babies – trisomy babies, premature babies, babies stillborn for reasons that no one knows, children taken from their parents. The world is a hard, cruel place. I used to think it was beauty and joy interspersed with grief and losses. Now I realize that the world is loss. It is always loss. The joy is the brief interlude before the dark.
This has been a long hiatus without blogging. I have continued to write in my journal, but I keep some thoughts to myself. Even in my openness, there are thoughts and actions that I don’t share, feelings too complex and painful to expose to the world. I am flawed, and I don’t always share the deeper flaws and hurts and bad decisions.
Today was a beautiful day – a day that allowed us one more incrementally small step on the path of healing. Today, we dedicated our second Cuddle Cot to Park Ridge Health in Hendersonville. They received it with such grace and gratitude that my tired, aching heart healed just a tiny bit.
So much pain in this journey but so much beauty too.
There was a small reception for us complete with a delicious dessert buffet. The girls were thrilled that they were given carte blanche to eat fruit and chocolate chip cookies. They laughed, spun around in the office chairs, and charmed all that were present. They were also extremely well-behaved, standing quietly while I told our story.
Many different departments were represented including administration, surgery, the Baby Center, pediatrics care team members, one of the CFOs, and our friends from the Mountain Area Pregnancy Center. They also filmed us speaking and interviewed us afterwards.
We were asked us to say a few words about our experience and why the Cuddle Cot was so important to us. I spoke about James’s life, about his death, visitation, and burial, about his memory, about the ways that we want to honor and remember him. We told them what a gift the Cuddle Cot was for us. There were few dry eyes in the room.
Everyone there thanked us afterwards with an earnestness that brought tears to my eyes. They are so incredibly grateful for this gift that it made my heart glad. Their intent to help bereaved parents is so clear. Though the use of a Cuddle Cot comes in a dark time for a parent, it also brings light with it – a light that can illuminate that healing is possible, that though the road is long and dark and sudden, there is hope at the end. There is always hope. James is giving other families that hope.
Days like today remind me that one day, it will be ok. It won’t be great. It will never cease to hurt. But James lives on. His memory inspires us. His legacy helps other families take that first step onto the path of healing. We honor him in our hearts every day. His name will not be forgotten for a very long time.
Spring has arrived according to the calendar. I’ve always been torn between whether I love fall or spring more. Every year, as each season starts, I think “surely, this is my favorite.” Then the other season rolls around, and I think, “no, this is my favorite.” This year, I have no such thoughts. All around me are the signs of new life. Trees are budding. The days are balmy with cerulean skies and fat, fluffy clouds. The nights are cool. Spring is coming.
The season comes, and it leaves my son in the past. He is there, forever 5 months and 1 day. Forever a child of summer, fall, and briefly winter. Spring will never be his season. He will never turn his face to the sun, feel the rays warm his face even as the air carries a chill. He will never delight in the first daffodils unfurling their blooms, never smell the blissful scent of the hyacinth.
I am struggling so hard to be grateful for the time that we had. Some mothers never even have that. I had 5 months and 1 day. Time seems to fly, yet the days are endless. They blur together. Thinking clearly is difficult many days. I look back and wonder how it could’ve all passed so quickly. He was here – then gone. How can his life be over? How can it be true that I’ll never hold that chubby babe in my arms again? Never brush my lips across his fuzzy head? It is such a terrible pain.
My wounds had maybe just started to scab over, and the death of my uncle has ferociously torn them open again. I’m bleeding.
Today, we had lunch with a family from Greenville, South Carolina. They lost their beloved son at 5 years old to complications of his trisomy 18. They were also faced with the decision of whether to keep going or to let him go.
It’s so easy to talk to other loss parents – those struggling with the deep grief, the questions, the what-ifs, the regrets, the guilt. I don’t have to force cheeriness, make my black humor jokes, be self-deprecating. I can just be. There’s not a lot of searching for the right words, the right questions. It’s just raw because we’ve been there – through hell. We know the unspoken words – we can imagine what the other has suffered.
Tonight, I’ve been looking at headstones and gravesites. We want to design something beautiful for James – a small memorial garden. We want something natural, something that belongs here in North Carolina, like James does. An Asheville native – he is a rarity here. I couldn’t look for too long. It hurt so much.
We miss you little boy, sweet James. I still cannot believe that you aren’t here. I remember the things that we told you, as you slipped from this world in our arms. It was so important to me that you know how proud we are of you, how strong you were, how much we loved you. I had to whisper all of those things, to make sure that you heard them one last time.
Oh, it aches tonight, little one. It aches so much.
I don’t know if I want to remember this dream, but I feel compelled to write it down – so perhaps there is something in it worth remembering. It is the first time that I have dreamed of James in the physical sense. I’ve been wanting to see his face in my dreams so badly. I don’t remember his face clearly, but I remember that there was a baby that I recognized as James, and he had oxygen tubing and tape on his cheeks. It was little baby James – not the big, chunky boy that he became at the end.
We were in “our” house – only, as in the way of dreams – it wasn’t the house we live in now. It was a house that I had never seen before. I was practicing using our shotgun. Someone broke in – or maybe 2 someones, it’s hard to remember. The sequence of events in the dream is hazy, but Jim wound up shooting one of the intruders in the head at point blank range. James had been hurt prior to this, I think. He had been put in a laundry basket. We found the basket, and Jim said, “he’s dead.” I looked at him closely and then pointed to his face. “No. See? He’s breathing just a tiny bit,” I argued.
The dream then transitioned to 2 more people breaking into the house. We were trying to get James to the hospital. One person, we shot. The other person trapped us in a pitch dark room, and we were trying to defend ourselves. I knew that we couldn’t get out, and we were doomed. And then I woke up, physically ill with the violence and sorrow of the dream.
It breaks my heart that this was the first dream that I had of James. Why couldn’t it have been a peaceful dream? Instead, it was rife with violence and symbolic hurts. My brain is trying to make sense of his death, but obviously, I am also trying to make sense of my uncle’s loss.
My mother told me some details about the accident that I will not share here because of their graphic nature. Suffice to say that it was a horrifying wreck. I’ve been consumed over the past 48 hours with the fear that my uncle suffered, that he was scared. I hope not. I hope it was instant, like they told us.
Statements become trite because they are true. Life is short. It can end in a split second. A split second of inattention by a driver, the drift of a truck’s tires across the yellow line, the momentary terror before the darkness. It ended in a flash. 63 years of life over. A grandfather, brother, son, uncle, friend, teacher … gone.
I wish I could say that I seized the day today – that I held my daughters closer to me, that I hugged a stranger, that I paid for someone else’s meal when we went out to dinner. But really – I stayed in bed till past 2pm. My temper was incredibly short. I snapped at my girls. I didn’t make dinner. We ate out instead. My kids probably haven’t had a vegetable in 3 days. They’ve probably watched TV for a cumulative 24 hours. This isn’t the way that I parent normally but right now, it’s enough that they’re fed and safe.
I had a 15 minute breakdown while the girls waited in the car to go to the park. I sat at our kitchen table and just wept and moaned. I didn’t call my grandparents as I intended to do. I didn’t work on the ‘thank you’ video that needs to be done for James’s Cuddle Cot. I ignored the folders that need to be finished for the conference in April.
I could go on and on with the litany of ways that I failed today, but instead, I am going to try and sleep. I am sure it will be unsuccessful, but I have to do something right today. Send me wishes for happy dreams where I hold my son tight and tell him that I love him one more time.
Thursday evening, 530pm. I was standing in my bedroom at my dresser, ready to walk out the door for work. My phone rang and I checked to see who was calling. It was my mom, which didn’t strike me as odd. She sometimes calls (and vice versa) when she knows I’m on my way to work. I answered. Her first words were quiet, but I immediately heard it – that quiver in her voice that sent a thread of fear through my body, “something bad happened,” she haltingly told me. My heart stopped. My dad? One of my grandparents or brothers?
“Dara was in a car accident.”
“Is he ok?” I immediately asked.
“He’s dead,” she whisper sobbed. My heart stopped.
My uncle Dara…dead?
“WHAT?!” I half-yelled into the phone.
“He was killed in a car accident,” she managed to choke out the words again.
As she was talking, I was stumbling towards the spare bedroom, where Jim was working. “He’s dead? What?!?” I kept asking. When I slammed through the door and into Jim’s office, crying, he pushed his chair back from his desk and leapt to his feet.
I can’t remember what he said. I vaguely remembering brandishing the screen of my phone at him, as if he could somehow glean some information from its face.
“Dara is dead,” I hysterically sobbed. The confusion on his face mirrored my own.
I’m not sure what happened then. I remember walking to the kitchen, holding the phone, listening to my mother cry. I bent over at the waist, tears pouring down my face, trying to breathe. Then she told me that my grandparents didn’t know. They were napping at the time that my aunt was told of her brother’s death and were still sleeping. My grandparents didn’t know.
I almost had a panic attack thinking of what it would be like when they woke, pleasantly rested from a nap, to spend time with their 2 daughters (my mom and her sister, visiting from Tennessee), only to be told that their beloved first child, my Uncle Dara, 63 years old, was dead.
My mind shut down then. I remember little about the next few hours. It is too much to process for one person. My son has been in the ground less than 3 months. Doesn’t the universe grant you a “get out of death free” card for at least 6 months or a year? How can this be happening? How can my uncle be dead? I remember that Jim and I sat on our front stoop while the girls watched TV. I remember that we babbled whatever it is that you babble about when you’re in total and utter shellshock.
it has been just over 48 hours since I found out that my uncle died, and I am still unable to fully process this.
Let me tell you a little bit about him. He was a beanpole – over 6 feet tall and slim. He had a bushy grey mustache and beard. He perpetually wore a ball cap, sneakers, and jeans. He built his own house on a piece of family property, piece by piece, slowly. He liked to help out family members. He had an ever rotating assortment of cheap cars around. My twin brothers, especially my brother James, are younger versions of him.
Growing up with him as an uncle, I got used to being teased and embarrassed. One very clear memory I have from around the age of 10 was him following my acutely embarrassed person around a store, drooling and staring vacantly. He was a big part of my life for those first 20 years. When we were younger, my mother and her siblings (3 brothers, 1 sister) spent every single holiday together, and we traveled to Florida frequently. Those are some of the best memories of my life.
As happens, all my aunts and uncles started having children, their children grew up, and had children, and we grew up and had families as well. Family holidays started centering around grandkids and new families that were springing up. Still, my aunts and uncles were a big presence in my life, even if I didn’t see them as frequently.
July 2, 1999 – my wedding day. Dara and my mother, Robin (above) and his oldest child, Antoinette (below)
Dara really loved time with his family. Family was always a priority for him. Every year growing up, we went on a family summer beach trip – and he was always there – teasing us, dunking us in the pool, being an uncle.
When I was young, he had a trampoline in front of his house. It was a death trap, as all trampolines are. It didn’t have a safety net around it, as trampolines do these days. It is a wonder that we never broke anything. At over 6 feet tall, he would jump on the trampoline with us, and we would ricochet 8-10 feet into the air. I still distinctly remember those days and the exhilaration of flying so high up into the sky while my uncle laughed (maybe a bit maniacally).
He taught mathematics at Middleburg High School. His favorite joke that I heard a million times growing up was that he had 2 rules in his class. First rule – don’t touch the teacher. Second rule – see the first rule.
I cannot believe he is gone. If death only came for the wicked, the unkind, the hateful, the cruel, the selfish, the cheaters and liars, then Dara would still be here with us. But death comes for us all – sweet babies, good men – alike.
In 48 hours, I have already learned a lesson in humility. His death taught me something that I thought I already knew, but really, I just learned. Remember how I said don’t be afraid to talk to people that are grieving? Don’t be afraid to sit with others in their grief – no matter how painful? Remember how I said it like it should be an easy enough thing to do?
Well, I was terrified to call my grandparents. I didn’t know what to say. What could I possibly say to my beloved grandparents to relieve one ounce of this suffering?
Me. The person who buried her beloved son less than 90 days ago, who has written about him nearly every day since, I was at a loss for words. The irony does not escape me. I can’t even say what I was scared of – that I would break down, be unable to speak? That I would make my grandparents cry? What are we so freaking afraid of when it comes to talking about death?
Then I realized why I couldn’t do it. My grandparents were always a soothing presence for me as a child. They were always “the adults.” They were always “in charge.” Nothing would faze or ruffle them. They were grandparents. They’d seen it all.
Dara’s death has reduced them to what they really are – people. Just humans, like the rest of us. And now, the walking wounded, just like me. I see them for the parents they are, no longer just my grandparents, but a mother and a father and devastated.
So I called my nanny. She asked, in her typical fashion, how I was doing. I replied, as is my wont to do these days, “terrible.” And then we talked. We talked about James dying. We talked about the girls. We talked about Jim and how his work has been going. I told her how sorry I was. We talked about grief a little. My grandmother is easy to talk to in general. She’s kind, she has a nice laugh, and she doesn’t take life too seriously. I talked to her first because I knew that I had to talk to my Papa, and I knew it was going to be hard.
You see, my Papa talked to Dara every single day. They lived about 3.5 hours apart, so they talked on the phone multiple times a day, and generally many weekends of the month, my Papa would go up to their house near Gainesville and fish with my uncle. They had a very strong bond that was clear for anyone to see. I knew my Papa would be reeling, devastated, possibly broken, by this massive grief.
He’s had a tough life, my grandfather. His father was killed when my Papa was 15. He was shot in the line of duty in St Petersburg, Florida. It was Christmas Eve (or Christmas, I can never quite remember). His name was James Julian Goodson – the name borne by our sweet son.
In 2005, my grandfather lost his beloved grandson in a tragic drowning accident. Crosby grew up not 2 miles from my Papa’s house, and he saw that little boy every single day. To see them together was to see a miraculous and wonderful bond of love between a baby and his Papa. When Crosby died, the light in my grandfather’s face was extinguished. I’m not sure he ever fully recovered.
He’s since lost 2 great-grandchildren – our sweet James and my cousin’s baby girl, Erin.
I knew that when we spoke, it would be hard. I knew that he might not directly talk about Dara. I knew that I might have to say some things that were on my heart but that he might not be ready to talk about yet.
When he came to the phone, he first asked how I was doing. And I responded in my usual fashion these days. We talked for a moment, and then he confided to me how much time he spent with Dara, how he talked to him on the phone multiple times a day, how Dara was keeping my grandparent’s house in Brooker taken care of when they weren’t there. His voice cracked a little when he told me this. He said something along the lines of “you must know how this feels.”
And I said that I didn’t. Because I don’t. I know that losing a child is like losing a limb – that I surely know. But when James died, I lost his future. I lost all of the things to come, the things he might’ve done, the person he would’ve been. I lost a sweet baby who had yet to grow into a toddler or preschooler. I lost the future – James’s future.
My grandfather lost a son but also a friend, a companion, a confidante. My Papa lost a man that he watched grow from an infant into an adult – a father, a grandfather. Dara was my grandparents’ first child, born when my Nanny was just 19 years old. Papa told me in this conversation that he “kinda grew up with my Uncle Dara,” and said that he “wasn’t very mature when Dara was born.”
You love all of your children differently – equally – but differently. The love for a firstborn is unlike the love of the siblings that follow. That firstborn baby makes you a parent, teaches you about yourself, bares before you the selfishness of your heart, shows you just how much it is possible to love another human. That firstborn introduces you to the idea that now your heart walks around outside of your body. I too grew up when I met my first child, and so I understood when he said that.
And so, while I can empathize at the tragedy of losing your child, I cannot imagine losing someone that has been a companion for 63 years of my life.
The last time I spoke with my Uncle Dara was November 22, 2016. It may seem strange that I know that exactly, but it was because he texted me. His family was driving through Asheville on the way to Tennessee for Thanksgiving. His family wanted to stop and meet James. It didn’t work out, and the last thing that he said to me was …”I wish we could come to see him. Maybe next time we come we’ll be able to see him.”
I hope so desperately that they have met now – that James is with his great Uncle Dara, and James is telling him stories about his big sisters, and his mommy and daddy. And in return, Dara is regaling him with tales of the death trampoline, about the river behind his house where we’d swim in the water that was browned by tannins, terrified of alligators, about trips to the beach and ice cream at the Pier, about dunking us as kids, telling all of his small, funny jokes about teaching. I hope James, Crosby, and Dara are somewhere bright and happy and safe.
Rest in peace, Uncle Dara. You will be dreadfully missed.
Last night, I started to think back on the day of James’s visitation. For whatever reason, in my grief, I haven’t dwelt on those specific days. Maybe because the pain is too exquisite right now, and my mind is sheltering me from it – who knows? Some parts of those days are very hazy, and other parts stand out in sharp relief. For whatever reason, I started to think about bathing him. I remember nothing about the night he died. I don’t remember going to bed. I don’t remember falling asleep. I don’t remember when I woke up. I do remember bathing him though.
We tenderly undressed his little body. He had dried blood at the site of his PICC line and at the site of his Broviac catheter. We placed him in his little hot pink bath tub (courtesy of the sisters that proceeded him) with the whale sling. We gently cleaned him. My husband sobbed beside me. I remember shedding a few tears but overall feeling a sense of calm. We needed to do this for our baby. We had to take care of him.
At one point, blood started to ooze from the site of his PICC line. I think that I calmly asked someone for a Band-Aid to place over it. I don’t think that I broke down. I was his mommy, and I had to take care of him. After his bath, we dried him and picked his clothes. I didn’t want him to wear a suit or set of clothing that he’d never worn. I wanted him to wear the sweet little snuggly outfits that he always wore, so I put him in his warm little tan pants and a sleeper shirt with moons and stars on it – one of my favorites.
That memory is forever in my heart and mind.
People probably wonder why I am being so public about my grief. Why do I post to Facebook? Why do I write this blog? How can I share such raw, intimate images of the moment of James’s death with so many people? Do I need attention? Do I need validation? Am I just a crazy narcissist?
The answer is that I can’t not share it. I can’t keep this grief bottled up inside me. My son, my only son, died in my arms. To keep the words that describe it within me, to not share his life story, the story of his death, and his legacy – that would stymie my healing more than anything. Even more than that, I want people to see this grief. I want people to understand that there is no “healing.” There is no “better” or “recovered” from grief. Grief is forever. And it isn’t something to be afraid of or shy away from.
I want people to know how to support me and thus, how to support others. I want grieving mothers and fathers to know that they aren’t alone on this path. I want James’s legacy to live on through my words, through his story. He has changed me. I am not the person that I was, and I never will be again. He has made me better. I am more empathetic. I want to reach out more. I want to give more of myself to others. I’m a better mother.
Ultimately, I want to change the conversation about death and grief and funerals in America. That’s a big goal, and it’s one that I can’t achieve on my own. But by keeping this blog, by telling James’s story, by buying Cuddle Cots, and by being honest in this journey, I hope that I can help make a change.
Grief isn’t pretty. It can be awkward and messy and scary; but it is an emotion more than anything that shows us what love is. We grieve because we loved, and we lost. We grieve because something more precious than words has been taken from us. We grieve because we will never be the same people again. We grieve.
And we need you to be with us in our grief – public or private.
The other day, I was standing at the back door of our house, staring into the yard. The wind was blowing lightly, and our tire swing was moving gently in the breeze. For just a moment, I saw a little boy sitting there. His hair was dark, messy, blowing in his eyes. He was pushing the swing with the toe of his sneaker, holding onto the chains with both hands.
It was only a second that I saw him there, and then he was gone. I realized that I would never see that particular little boy there. Maybe one day, another child – but never him.
The death of a child takes from you not only your present joy but also the joy of the future. It takes away the first days of school, the graduations, the weddings, the smiles, the tears, the scrapes and boo-boos that only a mother can kiss away. It’s all gone in an instant. In a flash, before you are even ready, the moment of goodbye has passed. There are no take backs. There are no do-overs. In a flash, you are faced with a future of what-ifs and if-onlys and unanswered questions, doubts, regrets.
Grief is hard in so many ways. I have such a burning desire to help others. The Cuddle Cot campaign, the Rainbow boxes/bags for the PICU, cards and letters that I send to other grieving parents – they all take a tiny piece of my grief – so tiny that you probably couldn’t even see it – and transform it into hope and love.
Yet, in giving to others, in reaching out, my own grief falls by the wayside somehow. It’s always there; it always weighs 1000 pounds. But if I’m doing something, then I don’t have to look directly at my grief. I can carry it. I can bow under the crushing weight, but I can still walk.
I talked to a fellow loss mother today. She is 4 years out from her sweet baby dying in her arms. She gently reminded me that I have much grieving to do yet. I was talking to her because I’ve decided that I want to become a doula. It won’t replace being a veterinarian but I plan to do it as an adjunct to my paying job.
It may sound crazy – but ever since I was pregnant with my first, I’ve loved birth. I’ve loved the birthing process and mothers. When I was present for my niece’s birth (the first birth that I’ve ever attended) – it was an amazing, terrifying, exhilarating experience. The adrenaline rush was incredible. I wanted more of it. Even then, before James, I considered becoming certified in the Bradley method of childbirth (what I used for Evaline and Hazel’s births). Life has a way of interfering, and the idea kind of fell away – I was too busy, too much time at work, little kids, etc. etc.
James has renewed my passion for childbirth and for mothers. He has also taught me that life is short, and no time should be wasted. If we want to do something, if we feel drawn to do something, we should do it – especially when it helps others. On the other hand, I know that I need time. My grief is still completely raw. I am like an exposed nerve – just the gentlest brush against me, and the pain screams through my heart and soul.
So it is not time yet, but I feel rushed. I feel like time is short. It’s so much shorter than we realize. It’s so much shorter than we would want it to be. There are so many mothers and fathers out there that will (unbeknownst to them now) walk this path. I don’t want them to walk it alone. I want people to know that there are paths to healing that are so much better than what is offered now.
I want people to know that you can leave the hospital and bring your baby home. I want people to know that you can hold your baby during his/her visitation/funeral. I want people to know that after your baby dies, there are options so that your baby can stay with you for a prolonged period of time. Memory making and goodbye don’t have to be rushed.
I can’t emphasize how much taking James home with us from the hospital meant to our family and how much it helped to start our healing process. His death tore a gash in my soul so wide that I know it will never heal. If I’d had to hand his body to someone else that day, if I’d had to leave my baby in the hospital, I don’t think I would ever heal. With the help of the Cuddle Cot, with his home visitation, with his home funeral and his family surrounding us, we were able to put the first foot on the path towards healing.
So I feel an urgency to help others, to show them a way that is different than we’ve all known. Yet I know that I must go slow… slower … slowest. I must let the grief nearly consume me, burn me out until I am nothing but ashes, so that I can slowly start to rise again. It’s totally against my nature, but I am trying. I am trying so hard.
Grief is messy. No one likes a mess, and so people look away, pretend it’s not there. Everyone wants a happy ending to the story. Everyone wants the nice little bow wrapped around the package.
I remember several years ago that I somehow stumbled on a blog about a little boy named Tripp. He had a terrible disease called epidermolysis bullosa. As is the norm (I’ve now realized), I had never heard of it. It is a horrifying disease – absolutely shattering – in my opinion, much worse than anything that we faced with James. I followed the blog closely as Tripp struggled, sensing that the end for him would not be long.
And then he died. And I stopped reading. I can’t tell you why I stopped. My heart genuinely ached for this mother, for that sweet little boy. But his story had “ended.” There was nothing else to read, right?
Well, our story hasn’t ended. James may be gone, but we are still here – loving him, mourning him, aching for him. We are still here, getting up every morning and trying to face the day. We are still here, stretching out our open hands to others, trying to offer comfort, the gifts that we have to give others.
I get asked if I’m “ok” on a near daily basis. Honestly? No, I’m not ok. I am as far from ok as I could possibly get without going full circle. I am – as someone else so eloquently put it – bleeding to death inside.
I held my son, my sweet, chubby, bright-eyed baby, in my arms as he died. In that moment, despite everything, I wanted to die with him, to close my eyes and never feel this pain. I witnessed his last breaths for all time. I felt his heart against mine, slowing, slowing, gone. He slipped away even though I held him against my mother’s heart. How could I be holding my baby and not save him? How do you survive it? How do you go on?
The Catherine that you knew is gone. The Catherine that believed in happy endings and shiny packages neatly tied with bows – she’s gone. The Catherine that arrogantly believed that nothing truly bad would ever happen to her – she has learned a valuable lesson. She learned that life is short and that it can be more painful than any of us ever expected or knew.
And despite that, I would do it again. All of it. Just for five minutes with that bushy-haired little man with his wise eyes. For those of you that are afraid – afraid of death, afraid of what could happen – fear not. Fearing to lose something that you’ve never had is the saddest reason that I can think of to miss out on life experiences. Does it hurt? Yes, as if a thousand tiny shards of my broken heart are cutting into me every breath I take. Do I miss him? More than words could ever hope to capture. Would I do it again? Over and over. Just for five more minutes. A million lives in front of me – and I would still choose him and this path.
And don’t turn away from those of us that are grieving such a tremendous loss. Walk beside us. Sit with us. Listen when we talk about our children. Say our child’s name, as naturally as you would say Evaline or Hazel. They are part of us forever. There is no hurting us by remembering, by uttering those precious syllables. The only hurt is when those we love say nothing.