Category: Reflections

Submitted by Paul (Teddy’s dad)

On the morning of Dec 30, 2022, my wife and I lived every parent’s worst nightmare. We woke up to find that our child Theodore, who we call Teddy, did not. Our beautiful boy was 15 months old; walking, talking, growing, and curiously exploring the world the way one-year-olds do. And now, suddenly, he was dead. He wasn’t a sickly child, though there were some scares along the way. When he was born, he spent his first two nights in the NICU due to trouble breathing. Then, he had a febrile seizure when he was 11 months old, but even then, we were only in the hospital for a couple of hours before being sent home, the doctor assuring me that febrile seizures were harmless. The day before he died, he had gotten a fever and a cough: but it was just a cold, we weren’t worried. A sick toddler sucks, but they don’t just die from colds, do they?

This isn’t about the pain and the horror of losing your child, so I won’t really get into it, but it’s present; then, now, and every day for the rest of my life. The rest of that morning was a whirl of police and people from the medical examiner’s office coming in and out, taking pictures, asking questions, asking more questions. All the while we’re in shock, we’re in tears, we’re screaming at the sky. And after a time, they were gone, taking our son’s body with them. That was a Friday morning. We were told the medical examiner wouldn’t be able to get back to us until Monday. Suddenly the house was quiet, and my wife and I were left there, shattered, with one question we thought we would have to wait a whole weekend for: why?

Why, is a very big question when you lose your child. One that we asked a lot in those first few days and weeks and months. Even through the fog of early grief, we knew we wouldn’t get answers to the existential “why’s” that we had, so our hope laid with the medical ones. It was the only thing we had to look forward to at that point: answers. Monday came and Monday went. Surely, he’ll get back to us when he knew something, we can wait. Tuesday came, we couldn’t wait anymore. I called.

The medical examiner performed the autopsy, we were told by staff. Nothing “remarkable” was found. We would have to wait for the lab results.

“How long would that take?” We asked.

“Well, they try to expedite cases involving young children,” was the best response we got. Unfortunately, my brother in law’s nephew had also died as a young child. So, we asked my sister how long it took for his lab results to come back.

“Ten months.” 

Well… I guess we would have to wait a bit longer than a weekend. So, we speculated. We ran over the days and hours leading up to his death over and over. Was it something to do with his breathing problems from when he was born? A febrile seizure? Was it something he ate? Covid? RSV? Maybe this, maybe that. Maybe it didn’t matter, the result was the same. But, maybe…

Five months to the day after his death, a manilla envelope came to our house from the Delaware dept. of Health. It could only be one thing. We gave ourselves a few hours to prepare to open it, expecting the medical report inside. When we finally did, it was only his death certificate.

Cause of death: Parainfluenza type 3. This would require some googling. From what we gathered, it was the flu’s cousin, barely indistinguishable from the regular flu. But that was it, all we had was the certificate. No report, no explanation. It wasn’t enough, so my wife called.

To his credit, the medical examiner who performed the autopsy called us back, it was the first time we had spoken to him. He was forthright with us, while trying to remain compassionate. He told us that he didn’t believe the parainfluenza 3 is what killed him. He said there was some swelling of the breathing passage, but not enough to suffocate him. He said the truth was he didn’t know how he died, but that was the only lab result that came back positive, and he had to put down something.

So, five months of waiting and the best we had was an answer to what kind of cold he had when he died, but not how he died. It didn’t work for me; I needed an answer. I like answers. I’m the type of person who checks IMDb during anything I watch: who wrote this? What do I know that actress from? And so on… So, I decided on an answer. Based on theories we had and things the medical examiner said, I created an answer. It was possible, plausible even. But it was also tragic and preventable. It could be best categorized as a series of unfortunate events that led to the loss of my son’s life. It felt pointless. It gave me closure, but in doing so, it broke me.

I mean “full on, right back to the first weeks after his death, I need to call out of work, and I don’t know for how long” broke me. To assign someone so meaningful to me a meaningless death, I lost my faith that there was any meaning to life at all. It hurt to believe it, but I needed to believe something. So, I did. Thankfully, my wife did not.

Several months later, I was fortunate to tell Teddy’s story to a bunch of men in my support group, the Sad Dad’s Club. Afterwards, lying in bed, my wife told me that she hates when I tell people that’s how Teddy died.

“But that’s how he died.” I responded.

“You don’t know that.” She stated bluntly. “The medical examiner doesn’t even know how he died. We don’t know how he died.”

I didn’t argue, but I needed to hold on to what I thought I knew. So, I left it. But she didn’t. She kept looking. And her search took her to SUDC.

SUDC stands for the Sudden Unexplained Death of a Child. You’ve probably heard of SIDS, well it’s like that except for children between 1 and 18 years old. Like SIDS, we’re not really sure what causes it, but the result is the same: a breathing child falls asleep and during that time, they stop breathing. Whatever reflex most people have that tell them “hey, you’re not breathing, time to wake up,” they don’t have it. SIDS is most common, and the chance of it happening after 4 months old tails off, but there’s still a tail. It still happens.

It happens to roughly 1 in 100,000 children. Doesn’t sound like a lot but let’s break that down. According to SUDC foundation (www.sudc.org); in 2021, 249 children between 1 and 4 died a sudden unexplained death in the US. Does it stop after 4? Nope! Even 107 teenagers between 15 and 18 were affected by SUDC. With dozens of children in the age groups in between as well. In total, in one year, 450 US children just suddenly and inexplicably died. Maybe that number isn’t very high compared to the number of children there are in the US, but 450 families going through our pain per year is WAY too many for my taste. And despite what is listed on his death certificate, despite what stories I tell myself, my son’s death was one of them.

I understand why the medical examiner gave us an answer on the certificate, even if he did rescind it soon thereafter. We found out a lot of families get the answer we did, whatever comes back positive, though they mostly don’t get the follow up phone call. And I get it. They want to give us what I wanted to get: answers, closure. But there’s a problem with this practice.

What we didn’t get is the community of parents who are going through exactly what we’re going through because we spent months thinking we don’t qualify. I was lucky to find a tribe of loss parents in the Sad Dads Club, because unfortunately, the support for men who lost their children is so few and far between that those of us who seek it out band together no matter the cause of our child’s death. My wife, though, even though there’s so much more support for moms than there is dads, hadn’t been able to find her tribe, until now. What we didn’t get was Teddy’s name, along with the many others misdiagnosed after death, automatically added to this group. Turns out that research may show a connection between SUDC and febrile seizures. Hmm, maybe not so harmless after all, huh? His death could help researchers who are studying what causes this. With the false diagnosis, that doesn’t happen. Sure, that doesn’t bring my son back, but maybe it could eventually provide us with actual answers, and more importantly help prevent this from happening to other children.

So, now I know. My son, Theodore Xavier Zurheide, died as a result of SUDC. And it’s still not an answer, but it’s a much better one than what I had made up before. It gives us research to participate in, it gives us something to advocate for, it gives us something to strive for, a way to find meaning as we journey through this life we did not plan for. I gives us community. It gives us purpose. And after going through something as isolating and life shattering as losing your child, that’s a lot more important than answers.

Submitted by Ethan (Cana’s dad)

As a loss parent, the holiday season seems to bring a hurricane of emotional turmoil each and every year. In what should be a season of hope and joy, the bells you used to hear now ring empty. Returning to nostalgic holiday traditions, music, and movies is like looking through a nightmarish kaleidoscope, where old favorites now take on new twisted themes and meanings.

Christmas songs about longing to be reunited with a loved one become painfully relevant after child loss: “Please Come Home for Christmas.” “Christmas (Baby Please Come Home).” “All I Want for Christmas is You.” The list goes on and on, and you now hear every song differently. It no longer feels like “It’s the Most Wonderful Time of the Year,” though that throw-away line about “scary ghost stories” finally seems fitting. You feel like you’ve become a ghost yourself. People who know of your loss seem to tremble as you walk by, though they hope you don’t notice. You’re truly a specter to them: the Ghost of Christmas “I can’t even imagine…” You’re a walking, talking reminder of the grim reality that children can, in fact, die. Without warning, reason, or explanation. Jacob Marley’s iron chains and frightening dental work have nothing on you, and the terror that you now seem to bring certain people.

After two holiday seasons without my firstborn daughter, I’ve found that one of the most isolating parts of this lifelong grief is the feeling that she’s been forgotten. That people are afraid to talk about her. That it’s easier for them to pretend she never even existed. Any loss parent will tell you that the silence surrounding their child’s death is far more insidious than you think; even the simplest acknowledgement of their child’s life can make a world of difference, especially during the holidays. This year, give the gift of being a listening ear, even if it’s just a humble acknowledgment that you don’t know what to say. I promise you that authentic, honest compassion is the best gift that you can offer a loss parent, at any time of year. In our darkest moments, your presence and willingness to listen is a simple yet priceless gift.

Submitted by Matt (Lily’s dad)

6 months ago, my daughter Lily was born and died. She is my baby girl. From the moment she left us every breath has been painful. Missing her over the last six months, not being able to hold her or feel her soft skin or comfort her when she cries, has been unbearable. To think about a lifetime without her is impossible, and so we’ve lived each day from breath to breath. Our daughter Lehvi will have to continuously learn what it means to live without her baby sister as she grows up, and this alone is enough to break our hearts.

We don’t know exactly when Lily died, but Liza carried her with us for 39 weeks, two days before her delivery was scheduled. Lily died before she was born. The fact that she died before she could take her first breath does not detract from our pain, it increases it immeasurably. There is nothing still about the experience of stillbirth. The violence carried within the moments in a silent delivery room is beyond description. The strength and love that Liza has shown for Lily, Lehvi, and for me by surviving these moments and rebuilding our life with Lily at the center our hearts has astounded me, and I am forever grateful to her for lighting the path for our family.

We have received tremendous support from family and friends. We have also met the most incredible group of loss parents, moms and dads who inspire us with their love for their children and their compassion for us. They have shown me that there will be a day when joy and sadness can coexist in our life, and that Lily will always be here with us. To everyone who has reached out, written, sent cards or food, or asked how we are doing, your love and support have helped us through some of the most difficult days. Thank you for remembering Lily, for saying her name. Lily is and always will be our child, my baby girl, Lehvi’s little sister.

Lily, my baby girl, we love you so so much

Submitted by Brenton (Jeremiah’s dad)

As always when you find out you’re expecting you’re filled with joy, excitement, and anticipation. You start praying for the little life growing inside, praying for health, protection, safety, and a smooth pregnancy without any hiccups. For some reason that’s everything we didn’t get, Jeremiah’s and our story is very different. The first part of the pregnancy was fairly uneventful, much the same as Miriam’s. We worked on getting Miriam used to sleeping in the toddler bed instead of the cot. We practiced having her walk instead of use the pram. We read books to her about babies, although we knew it was going over her head. We were so excited to watch them grow up together. That all changed after Alana’s 20 week scan.

Alana was referred to the Maternal Fetal Medicine unit at Flinders. During her appointment she was told his prognosis was extremely poor and it was suggested to end the pregnancy. Brenton was working in Clare, 155km away. Most of you know his diagnosis, a little blockage in the urethra stopping urine flow, damaging kidneys and stopping the amniotic fluid which helps with lung development. Barring a miracle, our dear little boy had no chance. The medical team told us he wouldn’t survive, unfortunately they weren’t wrong.

We decided to continue, in hope that we would meet him for just a few minutes and hear him cry.

We transferred our care to the Woman’s and Children’s Hospital and had check-ups every three weeks. We had regular scans and every time we’d be told things like “his heart is strong” or “his brain is developing correctly.” But we could see the massive black blob in the middle of his body which we knew was his very full bladder. Our hearts broke repeatedly. After the scans we’d see a specialist obstetrician only to be told more of what we already knew. It was exhausting. We just wanted it to be over. The anticipation was killing us. We knew one day we’d feel better, we’d never stop grieving or missing him, but someday we’d have a new normal and we’d be ok. We needed to get though labour and delivery first. And his death.

At our last appointment we were given an induction date, we were dreading it, and terrified. The next day Alana went into labour. He came on his own terms. We heard him cry and he passed safely in Alana’s arms. He was at peace. We love him and always will.

A poem by an unknown author:- 

They say memories are golden

Well maybe that is true.

We never wanted memories,

We only wanted you.

A million times we needed you,

A million times we have cried.

If love alone could have saved you,

You would have never died.

In life we loved you dearly,

In death we love you still.

In our heart you hold a special place,

That none will ever fill.

It broke our heart to lose you,

But you did not go alone.

For all our love went with you

The day God called you home.

Submitted by Ethan (Cana’s dad)

It’s been five months since my baby was born. It’s been five months since my baby died. My daughter entered and exited this world silent, still, and voiceless.

It still feels like everything just happened yesterday, but it also feels like it was all years ago. My wife and I are solidly in the “long-term” aftermath now. We’ve accepted the sheer objective reality of Cana’s death: we’ve held the funeral; we’ve met with friends and family to reassure them that we’re “doing ok” (whatever that means); we’ve both gone back to work, forcing a feigned sense of normalcy just to make it to the end of every workday. The world around us keeps on spinning, while the festering pain of our baby’s death lingers on in the background, 24/7.

The initial sharpness of that pain has dulled over time, but it’s clear that it will never fully go away. There’s no concrete explanation as to how she really died, no real reason why this all happened; just the constant, numbing reality that “it is what it is” now, and “it” is forever.

The quiet is still the worst part, as it always has been. The silence of the hospital room after she was born, the silent car ride back home after we left her body in the hospital morgue; the cacophonous nothingness echoing throughout the house during that first night at home without her (and every night since).

Overhearing strangers complain about their newborns out in public is like a knife to the gut every time, even on relatively “good” days that had been going well otherwise. The same cycle of infuriating thoughts stirs up every time: I would do anything to have my baby’s cries wake me up at 3AM; I would do anything to get the chance to console her, even if it took until sunrise; I would do anything just to hold her, to have even just a single chance to keep her warm and safe and loved.

I know that these strangers don’t know my situation, and to be fair to them, I don’t know theirs either. But that gut-wrenching twinge of pain every time I overhear the complaints of sleepless nights and crying children: I would do anything to carry that joyful burden instead of this unbearable, abject nothingness that came in the wake of my baby’s death.

In those dreaded moments of silence, where I should be hearing my baby’s soft murmurs, I know that she is somehow still present. But I wish that I could audibly hear the soft coo of her small voice: that voice that I never got to hear. Even the shrillest, most grating cries would be a soothing lullaby to me compared to the ear-splitting silence that will forever bellow from her cold, empty crib.

Five months after Cana’s death, what stings the most is that fact that I never got to know what her voice sounded like. Her life was short and silent, but the impact of that small life lasts forever in her story. In the months since her death, that sweet voice has slowly spoken life back into me through the deafening silence. Her voice has helped me to recognize just how fragile, precious, and beautiful life really is (even when it’s incredibly painful).

I’ve realized that the very best way to hear my baby’s voice is to thoughtfully listen to the stories of other loss parents. In a mysterious way, our babies have found their voices through us, and the stories that we tell about them. I truly believe that telling Cana’s story and listening to the stories of other lost children is the best way that I can honor her; in those stories, I’ve finally been able to hear my baby’s voice.

Submitted by Albert (Auggie’s dad)

Music is one of my oldest loves in life. It is freedom, expression, and power. It surrounds you the way that any emotion would. It has had such an impact on my life from so early on that it was one of things I was most looking forward to teaching, sharing, and enjoying with my son Auggie.

I wanted his room to be filled with it. Maurice Ravel’s “Daphnis et Chloe,” Coleman Hawkin’s “Body and Soul,” Radiohead’s “How to Disappear Completely,” Merle Haggard’s “Mama Tried,” Mocedade’s “Eres Tu,” Tupac’s “Dear Mama.”

Instinctively, I used music to cope with Auggie’s passing. My Auggie playlist is there on the dark days and the times when I want to put the world on pause. It’s an offbeat mix of songs that reminds me of him in general, like The Sundays’ “Monochrome,” which recounts a girl’s early morning hours on July 20, 1969 watching the moon landing, the same date as Auggie’s birthday.

The playlist also has songs that where I imagine the universe speaking to me, or me speaking to Auggie. Dawes’ “Doomscroller Tries to Relax” sings “Let’s enjoy each other’s company on the brink of our despair. Does someone have a song to sing? Or a joke that they could share?” Palace’s “Heaven Up There” asks, “Is it heaven up there? ‘Cause it’s hell down here.”

But the song that has the biggest impact for me lyrically has been Senses Fail’s “If There Is Light, It Will Find You.” Singer Buddy Nielsen wrote the song from his own experience of his wife coming close to dying during the birth of their daughter. The song is about him facing the idea of raising his daughter alone.

It’s an incredibly moving song, something most people wouldn’t expect from a rock/metal/punk band. The title alone is poignant enough, but digging through the rest of the lyrics it’s impossible for me to not transpose the original meaning into my own situation.

“How am I supposed to move on when I’m so afraid of the loneliness that I feel when the sun sets on your grave? I guess that the best thing I can do with my time is love every minute of life.”

But really for me the part that has resonated the most, the part that I have listened to again and again and again, the part that I wholly connect with and meditate on is:
“If we don’t lose someone who we would die for
How do we pick ourselves off the floor
And face each day as if we’re not dying alone?
We’ve got to love ourselves, that’s how we respect our dead.”

Your mom and dad love you so much, Auggie. It would be all too easy for me to give up and not try, but what kind of father would I be to you if I did? What example would it be to you? How should I honor your memory? If I truly love you as I say and feel that I do, I have to love myself, too, to honor your memory.

You will be with me at every concert, sitting next to me listening to every record, in every note that I pluck out, and the reason for me to strive to be the best man I can be.

Submitted by Rob (Lila’s dad)

My wife’s grandfather passed away recently. He was an amazing man who brought so much joy, laughter, and happiness to everyone in his life. Loss, in all forms, is difficult. When you lose your child, you mourn someone you should have had more time with. When you lose a grandparent, you mourn someone you had so much time with. While different, similarly difficult in that time impacts your grief — whether you had too little, or as much as possible.

While we were at his funeral, and hearing family and friends talk about his life, I started to think about his obituary. Of the various sections you can reliably predict will be included in the obituary, I wondered if Lila would be included in the “pre-deceased by” list of names. His great-granddaughter. She was.

The obituary was unbelievably, and beautifully, written and I can’t adequately articulate the  happiness, relief, and fulfillment that I felt to see Lila’s name included. I still, 5 years later, do some pretty intense mental and emotional gymnastics when considering how others see, or remember, Lila. Or how they don’t. I consider her part of our family, but does the rest of my family think of her? I often talk, and write, about Lila being overlooked and forgotten. The pain associated with people omitting her is suffocating. The validation associated with people remembering her is elating. 

I realized Lila being considered, remembered, and loved by my friends and family is the what I need the most. That’s what those closest to you can do for you in the wake of your loss. While I’m here and they’re not: remember, and acknowledge, them.