stories.

Submitted by Ethan

Several years ago, I saw a commercial that has stuck with me ever since (a fact that I’m sure State Farm’s marketing department would be very happy to hear). In the commercial, we see a series of vignettes of a man’s early adulthood, as he meets his future wife and eventually starts a family. We begin by seeing the man at a party, enthusiastically telling his friends “I’m never getting married!” only to immediately cut to him buying an engagement ring. We then jump ahead in time to see the happy couple vehemently stating “we’re never having kids!” only to immediately cut to the delivery of their first baby. Again we jump ahead in time, now watching the new parents confidently saying “we’re never going to leave the city and move to the suburbs!” As you’ve probably guessed, we immediately cut to the family living in a quaint suburban neighborhood, mini-van and all. The story continues on, yada yada yada, you get the picture. For what it’s worth, I’ve always found the commercial to be rather fun, even charming in its intended message. But in the wake of my daughter’s death, that thin veneer of idealism has become cracked and faded. I picture my own life, following Cana’s death, in the form of that commercial and I can’t get that picture out of my head.

When someone you know experiences a tragedy, it’s our natural human tendency to subconsciously think to ourselves “that’s so terrible…but surely, that will never happen to me…right?” It’s an innate biological defense-mechanism, as we subconsciously try to fortify some sense of mental self-preservation. Without it, we’d go crazy with anxiety and despair at every turn. In most cases, we’re completely right! Nothing happens, and we go on living in blissful ignorance, forgetting just how fragile life can be. But at some point along the line, when something truly unthinkable does happen, we are left to pick up the pieces of a tragedy that we feel we never saw coming. I imagine that most loss parents lived in this same state of blissful ignorance before the death of their own child; I know that I certainly did. 

When I look back at photos and videos of our pregnancy with Cana, now three months after her death, I can’t help but fume and fester over the dramatic irony of it all. I look at my smiling face in every photo and, honestly, scoff at my own blissful ignorance. At times, I just want to jump through the photo, grab myself by the shoulders and tell that old version of me everything that he doesn’t yet know. But even so, I know that we ultimately couldn’t have changed the outcome of what happened to Cana (at least that’s what I now have to tell myself). I know that we will never get to exist in that state of blissful ignorance again, during any future pregnancy. I also know that I need to fully surrender myself to all of the pain of Cana’s death if I ever hope to heal. She is gone from this world and is never coming back, but I know that the best way I can honor her is by carrying the pain of that truth rather than burying it. I’m hopeful that one day, I will be able to look at those pregnancy photos and videos with no shred of anger in my heart. The sadness and pain will never go away, but I know that the profound delight that Cana still brings me will outshine that darkness.

I truly never thought that I’d experience the death of a child. I never thought that during every future holiday season, there would always be an empty chair at the kid’s table in my head; a chair for my first baby. I never thought that for every remaining day of my life, I’d be carrying the weight of my firstborn child’s death. I’d hoped that all of those “never” statements I made throughout my life would be like the ones from that commercial: harmless, fun, maybe even laughable. Instead they hurt, and always will. I never thought this would be the start of our family, but I choose to carry the weight of that pain rather than bury it, for Cana’s sake. She is and always will be the start of our family, no matter what that family grows to be in the future. She is a permanent part of its foundation, and even in her worldly absence she emanates so much joy; I know that fountain of joy will never run dry.

An email to family submitted by Matt

Hello everyone,

We are glad to be coming to New York to share Thanksgiving with everyone. At times it may be difficult for us, and we may find we need to take a break or leave. I have found that it helps to be explicit about our needs, so here are a few notes to help.

Please do:

Talk about Lily

Ask us how we are doing

Please do not:

Ask either of us about work. It is not a priority right now.

Love,

Matt

Submitted by Corey

We learned in mid February that my wife, Aja, was expecting. It was the greatest day of my life, and honestly the following 4 months were a dream. Everything in life was coming together, we were about to move to a bigger and better experience, and we were finally starting a family – nothing felt better than those 4 months.

June 11, 2022. We were moving Aja’s work materials from our house down to her new office in Calgary (about a 2 hour drive), and thankfully her parents and brother were there to help us out. We packed for a short amount of time before we went to her gynecologist appointment, where we were told that Harmon, our baby boy, was in perfect health. Strong heart beat, he was sitting in a good position, everything checked out. We returned to the move, where we had 2 trucks and 2 trailers packed.

As we were loading up, Aja wanted to jump in with her parents and brother so as to catch up. The first miracle, as their truck was stuffed full and she had to make the drive with me instead. The second miracle came when we pulled off to fuel up, while the in-laws travelled onwards. The trip was pretty bleak due to heavy rain, so we were travelling pretty slow, and we had only got past the halfway point when Aja said she didn’t feel right. She had experienced a separate medical issue earlier that month, registering her as a high-risk pregnancy, so we initially thought this could be related.

We pulled off at Innisfail, AB, and not 30 seconds after pulling off Aja’s water broke. By now she was hyper-ventilating and panicking. We drove straight to the hospital where I dropped her off at the emergency so that I could go find a parking spot. By the time I got inside, the nursing staff were just admitting her into a private room. The next 20 minutes are a blur to remember. Nurses were running everywhere, the doctor was preparing for an emergency delivery, and I was standing by Aja, who was crying and just looking at me repeatedly saying “Im sorry”. Apart from Aja, the only thing I recall vividly was hearing the doctor say, “there are no signs of life, we have to deliver now”. I am so very thankful that Aja blacked out for this entire experience, because it is one thing that I will hold closely for all time.

Harmon Wesley Roy was (still)born, weighing 1 lb, 1 oz. The doctor said that he was very well grown and developed for his age.

Miracle 3 – The hospital staff, all of them, were so incredibly wonderful. They gave us every support we could ask for, and more. In all of the tragedy, how they treated us and Harmon still makes us smile. By this time, Aja’s parents had managed to double back to be with us. the following 2 or so hours were just us in a hospital room, holding our son, watching him, imagining we would see him take his first breath. It was the most surreal moment of my life.

Then the doctor came back in, and I do not envy her for what she had to do. Since Harmon was past 20 weeks old, legally he had to be committed to a funeral service. What would you like to do with him, as in cremation, burial, etc? Do you know of any specific funeral home you would like to send him to? Among the questions, we also had to sign the paperwork showing that we had a stillborn child. Nothing to show our son had been both welcomed and then ushered away from this world. It was devastating. We agreed to send him to a funeral service back home, where we would have his remains cremated.

After all that, we had to get on the road again. This time we were ahead of Aja’s parents. The rain was pouring down, as it had been all day now. We had made it within 40 km of our destination when the trailer, full of work material, hydroplaned. The trailer spun out, took the truck with it, and we spun around two and a half times on the busiest highway in Alberta in the pouring rain. For those who know the QE2 Highway, it is always busy, but somehow this had occurred when there was a 40 second gap in the traffic. The 4th miracle. We both believe this was Harmon coming to see his Mom and Dad for the first time, checking in and making sure all is well. It was honestly a miracle we had not died.

That morning, we had been in paradise. Everything was good. Everything was safe. The three of us were a team. By the end of the day, after what seemed like trauma after trauma after trauma, there were two of us slowly going in to get a hotel room.

Submitted by Andrew

November 27, 2013

The day my life changed forever.

On November 23, 2013 at 10:19 am, Medical Center Hospital, Odessa TX, a 19 year old kid evolved into a man, a father, and a provider in a matter of seconds. 

Her name was Alice Josi Bernal. 

When I held her for the first time, I was mesmerized by her. She was a superhero with the special power of melting my heart. From the very first moment she was born, I didn’t even think of the simple fact that I had just became a father. Adrenaline, fear, anxiety, worry, excitement, whatever my brain could process in seconds is how I felt in the hospital that night. It wasn’t until I got to hold her, skin to skin contact, that’s when it hit me. That’s when I realized, this is mine. This little bundle of so much joy and energy and a living beating heart, is a part of me.. I helped create this life. I’m a dad now.. 

It was, undoubtedly, the best day of my life.

Alice, then, turned 1. And then I joined the Navy, active duty. And then she turned two. We moved from Texas to Florida and then baby girl turned 3. Then 4, and 5, 6, then 7… we packed up again and moved all the way to California…and then my baby girl turned 8… if I had known then, my sweet, sweet Alice Josi would be forever 8…I would’ve done more… My job was starting to take its toll on me, although, I wasn’t very open about it. Mentally, I had a lot to deal with the only way I knew how. Work through it and talk about it later! Alice, 8 years old, third grader at Akers Elementary in Lemoore, CA, was dealing with her own mental issues. She was bullied at school by the neighbor kids. Bullied to the point that her mom and I switched schools to distance her from them even just for a little bit. All the while, Alice is battling through migraine after migraine.. These migraines came very unexpectedly. But she wasn’t always open to talk about them. I mean, it makes sense doesn’t it? To an 8 year old kid, having a headache means I can’t play outside or watch tv or read my books and comics. Alice was a lover of many things. She had so much personality. She had great taste in everything and always knew how to accessorize. Her loves we’re always Music, movies, tv shows, comic books, Pokémon, and the occasional watching sports with Dad. Everything was normal. For 8 years, everything was normal. Even with these ugly and cruel people living next door, we always had her back and we made sure there was love waiting for her as soon as she walked in her house. 

Her favorite holiday was Halloween. Same as mine. The colors of fall, the spooky decorations her mom and I would put up in the beginning of September, the spooky movies on Disney plus, the spooky cupcakes, the spooky breakfast every Saturday when she was off of school, spooky this, spooky that, and spooky everything! Alice truly appreciated and loved the art of spook. And then, along came the holidays. Christmas and Yuletide holidays. The house would go from spooky to holly within weeks. Sure, she loved it. I don’t know any kid that doesn’t like cold weather, presents, and two weeks off of school. Am I right, parents? However, Alice appreciated more of the meaning of the holidays. The true meaning. Having the family together and giving hugs and kisses and time to each other. She loved to watch movies and certain movies during the later seasons. Her favorite Halloween movie was the nightmare before Christmas, no brainer. Her favorite Christmas movie, The Grinch. The holidays passed again and here we are going into 2022, not knowing at all what’s coming around the corner… it was a quiet start to a new year. It was a quiet spring. Summer of 2022 was the start of what will now be a lifelong feud between two families that won’t ever see eye to eye or agree to disagree. Alice’s entire summer was robbed by two sisters who never had anything nice to say about her. No matter what the reason was, Alice didn’t deserve any of it. Alice was the kindest, most gentle, loving girl in the entire neighborhood. She knew how to forgive, at times a little too well. These kids made her life unbearable to the point she couldn’t go outside and play. Even by herself. Then the migraines started to happen a little more frequently.. as parents, we tend to disregard headaches and migraines by saying “here you go! Take this Tylenol, and go lay down you’ll feel better!” 

September 19th, 2022

Now begins what will soon be the living nightmare I can’t wake up from.

TW…

It was a Monday. Work was normal. Work load was normal. Mommy is pregnant with now our third child, a soon to be healthy baby boy due in December. Sounds normal. We’re all excited and my son August, 3 years old, is excited to be a big brother. Alice is upset she’s not having a baby sister, but otherwise, everything is normal. I took her to school that morning.. she seemed tired, maybe a little lethargic, but I didn’t think much into it. It’s an early Monday morning, how much more normal could it be? What seemed to be a normal Monday changed when Alice came home early from school because of more migraines. Something was off about these migraines and how they were making her feel… she was in excruciating pain… she threw up in her bed while she was just trying to rest and sleep it off.. She went from her bed to mom and dads big bed. Still crying, still trying to feel normal again. These migraines came and went but not like this. This one, Alice felt like it was here and wasn’t going away.. the entire day, Alice was in tears… she would cry for help and cry on the floor in the bathroom thinking she needed to throw up and nothing was coming out. As a parent, there’s only so much you can do and say. When you’ve ran out of the things to say and do, well then you start to get annoyed. Which is where I went wrong and just wish I could go back and do it differently that day… We then got Alice to lay down again. Still in pain. Still lethargic. She was just so tired and needed to sleep. I came to bed at 11 pm. Alice is next to me. I rolled over, not quite asleep yet, and then I noticed something. I noticed a pool of what I thought was drool at first.. it wasn’t drool. It was vomit. Alice was still asleep with eyes closed.. I got up, not fully comprehending what’s going on. 

“Alice…Alice…ALICE! Hey, wake up baby…”

I’m starting to shake her to try and wake her up. She isn’t waking up to the sound of my voice. So then I pick her up and her body is stiff. Her arms and legs locked. I tried to carry her to the bathroom but her body seemed to be frozen and can’t move. I called for Amanda. She calls over some friends to help as I’m calling 911. EMTs came, Alice is still in a very deep sleeping state…Amanda and I are terrified and we don’t know what’s going on. She’s then rushed to the nearest hospital to ER. There, we get the worst news and a parent’s worst nightmare continues.

September 20th, 2022

We’re now in the ER…it’s late. Alice hasn’t moved. She hasn’t spoken a word. She’s attached to oxygen. Nurses and the doctor are in and out of the room while Amanda and I are in front of the bed just waiting for anything good or positive to happen.. the doctor comes in and says it’s time for a CT scan, just to make sure and rule out anything that could be wrong in her brain…

Results come back, the doctor, with the most unpleasant and unprofessional people skills says, “well…it’s not the best news. But it’s treatable…” he shows us the results and says they found a large brain mass in the front of her brain. We were shocked. We were confused. We just couldn’t believe it… not our baby girl. Not our Alice Josi. This has to be some cruel prank… it wasn’t. It was very real and happening fast. In a matter of what seemed like seconds, Alice’s levels then begin to increasingly spike rising higher and higher and very fast. Amanda and I are crying and we are screaming and begging the nurses to help her… “Save her please… please!!” They used the AED to get her heart back to normal… the way her little body jumped after the first shock is forever stained in my head. I can’t erase it. After hours and hours of monitoring her levels and what we’re hoping is progress, we’re then told that ER cannot give her the care she needs. It’s time for her to be taken to the closest children’s hospital in Palo Alto, CA for her to get the absolute care she needs during this time. Okay. Let’s do it. 

September 21st, 2022

Lucille Packford Children’s Hospital at Stanford University. Palo Alto, California. Alice was flown by helicopter, still unconscious, within an hour while Amanda, august, and myself are driving 3 hours just to see our girl again. And what we’re hoping is an awake, conscious, and “normal” Alice. The procedure was complicated. We knew the chances. We didn’t care. We wanted her back. This family sticks together. We have each others backs. The phone call that changed everything happened the moment we arrived in Palo Alto. The doctor that did the surgery for Alice calls me and we’re 20 minutes away from the hospital. “Mr. Bernal, where are you? We need to speak in person.” I tell him we’re almost there. “Okay, we will talk when you get here.” Amanda and I are now officially worried sick to our stomachs.. we arrived finally and are greeted by a social worker that works for the hospital. Hmmm…why do we need a social worker? Strange.. she escorts us to see Alice. Well, this time, Alice isn’t looking much like Alice right now. Her body is wrapped in warmers, she’s breathing through tubes and attached to bags and monitors and in that moment, the feeling was there… that feeling of hopelessness is starting to present itself. The doctor then comes and speaks to us, privately, my son is talking and playing with a team of social workers now. We’re done with the suspense, the cryptic comments, the unrelenting feeling of doubt. “Just tell us is she gonna be okay? Is she gonna survive?” The doctor finally says with pain and regret in his eyes… “I’m sorry…no.” 

In that moment, our world stood still. Our family had broken. Cries of pain begin to leave us. Or sense of “normal” was gone. Our baby girl, our Alice Josi, our little rockstar, our superstar in the making, her time with us is coming to an end. No…this just can’t be all the time we have with her. Please, it just can’t be… she’s only 8 years old. Please don’t take her from us… she still has things to do here on earth…

September 22nd, 2022

Now here we are still in the hospital with our Alice. Family has made it within days and nights of driving and flights. Everybody is tired. Everybody is hurting. We’re in shock. Alice for the time being, she’s still with us. All of us. The people who loved her the most. No more bullies. No more fake friends. No more people who never chose you first. Just the people who love you. We got you, baby. We’re here for you. Her favorite music played non stop next to her bed. Her favorite movies was playing on the tv while she was fast asleep. This hospital, even though we’re running on little time and energy, the staff gave her everything. Complete strangers just doing their job, gave her everything with the most genuine care. For those few moments we all had together, we made the last living memories we could make. It was almost time to set our little girl free… our last moments together, me, Amanda, and Alice together, amanda and I each got to pick one more song to lay in the bed with her and sing to her. We did that. We laid in bed with her as they begin to take her life support off… the sound of her last few breaths haunt me still to this day. Her heart was racing until finally her strong, caring, loving, and kind heart finally rested. Our Alice was finally free. Free from a world that wasn’t ready to see what she could do and what she was going to change. Setting her free was the hardest thing I’ve ever had to do and I’m haunted by it.

November 22nd, 2022

Alice. It’s been two months. Two months without you is like living in my own personal hell. I try. I pretend. I distract myself often away from feeling sad. But the truth is, I’m not okay.. music helps. Family and friends help. But it doesn’t bring you back. Days and nights are long and I am just counting down seconds hoping to see you again. The universe is cruel to take you away from us. Something tells me it was a mistake to take you so soon. But I’m hoping one day I’ll think the opposite of how I’m feeling now. You are so loved by everybody even new people who never met you before.. I wish you could see it. Your baby brother is almost here and I wish you could meet him and hold him. Being your father taught me lessons that no teacher could ever teach me. I learned from your mom. I learned from the tears, the cuts, the bruises, the mean kids, and also the laughs, the hugs, the love, and the moments we shared together. It’s not the same coming home from work and not getting a hug from you. It’s not the same going in your room and not waking you up to get ready for school. Nothing will ever be the same. 

Her life ended on September 22nd, 2022. But her story will continue to be shared and her life celebrated for as long as I’m alive and her family and friends. For any parent who has ever lost a young child to cancer, brain tumors, etc. I hear you. I see you. I hurt with you. You’re not alone. I’m not alone. Brain masses and tumors are something medical professionals need to be more serious about. More research needs to be done. More conversations need to be made. More children need to be saved. My daughter was wrongfully taken by a brain tumor we could not see coming. There was no time to prep for. When we caught it, it was too late. She didn’t have a chance and that’s the worst part. She didn’t get the chance to grow up. It’s haunting. It’s painful. I hope my daughters name and her story reaches out to more people and spreads awareness of the severity of frequent migraines and how much our children need us. Fight for them. Teach them. Love them. Hug them. Accept them. Time is precious…

Submitted by Kevin

On December 16th 2021, my wife Dana told me she was pregnant. This was the best day ever.

In the beginning, appointments went smoothly. She started experiencing heavy swelling/puffiness and acne from February to March, which was shrugged aside by her family doctor, saying this was normal. We weren’t going to be getting an OB referral for a while. Around 18 weeks, her blood pressure was rising steadily and she found herself very short of breath and heart constantly racing even when sitting.

We went to emergency in early April 2022 after being on the phone with health link, saying her blood pressure was reaching dangerous levels. When we arrived, the OB making rounds said something isn’t right and Dana needs to submit blood/urine samples. The OB took her on as she noticed how irregular this was.

The were traces of protein in Dana’s urine, which pointed to signs of preeclampsia. Her family doctor was informed at this point that we had lined up Dana’s own OB. After more tests and a few overnight trips to emergency from peaking high blood pressure, the OB urged Dana to stop working immediately and potentially be submitted to another hospital in the city with better technology, doctors and specialists.

Dana was submitted to the Royal Alex Hospital May 2nd 2022 to have better care under the watch of an entire phenomenal OB team. She was almost fully expected to remain there until delivery. Jude’s due date was August 19th. We met with many specialists including doctors from the NICU, who discussed trying to make it to 25 weeks for the best chance of Jude’s survival and overall health.

Due to COVID protocols, I couldn’t spend nights at the hospital with Dana. I would go everyday after work to be with her until around 9:00PM and be in constant communication on the day-to-day tests they were doing. I held on to every bit of hope hearing his heartbeat and seeing movement in the ultrasounds. It was later mentioned that the placenta wasn’t functioning 100% and that Jude was having some difficulty receiving from it, almost as if his lifeline was a straw getting pinched.

May 7th, I went home after seeing Dana until around 9:00PM and watched some hockey with family. The next morning, I woke up to a missed text from Dana around 3:00AM asking If I could call her. I woke up to it around 7:00AM thinking if she hadn’t called, it must not be urgent. When I texted her what’s going on, she replied saying they were busy doing the morning tests and she’d call me afterwards. I planned on seeing her later that morning, so I finished up some laundry.

Mother’s Day, May 8th 2022 at 9:00am, I received a phone call from the Royal Alex Hospital saying I needed to come right now. My heart began racing as Dana had not called me back. My mind immediately jumped to either:

A) She’s delivering Jude. 

B) Something horrible had happened.

I got to the hospital and was placed in a room by myself. I waited several minutes until I saw Dana walk through the door. We locked eyes and at that instant, I knew what had happened. Jude’s gone. We broke down. 

My world crumbled, and we held each other crying. They couldn’t find Jude’s heartbeat that morning. I could barely mutter the words “What happened” through the shock and tears. This continued for 20 minutes as her mother joined us in the room to console us while they brought up the ultrasound to do a final check for a heartbeat. I’ve never wanted to see something more in my life, watching the screen we had previously seen in past months with joy in our eyes as Jude would move around; only this time there was nothing.

Things moved quickly afterwards, as Dana’s nose wouldn’t stop bleeding. She wasn’t properly clotting internally as her blood platelet count was rapidly dropping. The team said we had to get Jude out of Dana by means of emergency C-section immediately, or we could lose her.

Before she went off for surgery, we had to sign a waiver in case she needed a hysterectomy. Panic had set in as she was wheeled away. I lost my son Jude and could potentially be losing Dana. I was about to lose everything. I was frozen, panicking inside, and falling fast. I waited for over an hour with Dana’s mom, until they came out to say the C-section was successful. 

After being that low, I gave them the biggest hug. I needed that win, because it felt like everything was gone and I couldn’t go any lower. They suited me up in the gown and told me how beautiful my baby boy is. He was on the other side of the curtain when they brought Dana in to place all of the IV’s. I told her I was there and went into survival mode. I contained any emotions I had to be there for her. To do anything and everything they needed of me.

After being transported to our room for the evening, we were asked if we wanted to see Jude. Our heads went to dark, graphic places. We didn’t know if we could stomach it, but knew we had to. While Dana recovered and became more conscious, we talked and procrastinated meeting him. Finally, hours later we asked them to bring Jude in. I had so much fear, but the minute I saw him, I fell in love. He was the most beautiful angel I’d ever seen. We held our son, not knowing how long we would get with him, savouring every moment as mother and father. 

As a loss-dad husband, you witness your partner go through the most horrible physical and mental pain possible, especially in the first few days afterwards. We spent that night with Jude in his cuddle cot bassinet. The next day, we were transferred to a sponsored room for grieving parents following their loss, similar to a nice hotel room. Dana had more recovery and tests to do, but we had Jude until we told them to take him away.

We spent a week with Jude in that room. Holding him, listening to music, having meals, watching our NHL team in the Stanley Cup Playoffs (I’ve always wanted to watch games with my son), having close relatives up to meet him. Every moment we held him, it felt like he was asleep, and we were just waiting for him to wake up. Tears came often as reality would creep in, but that was the best week of my life in that room with Dana and our son Jude. 

Closer to the end of our stay, the team came to the conclusion that there was placental abruption from a blood clot. We were so close. We made 25 weeks. But all signs pointed to Jude staying with Dana longer for a healthier baby. 

Leaving Jude killed us inside. Trying to find the nerve to tell the nurse she could wheel him away with all the other loss babies, all while never wanting to leave without our son, the way it should’ve been. 

Dana was finally cleared for release, and we left with boxes of clothing, photos, flowers, moulds of his hands, feet and our hearts broken. The drive home was complete silence. I can’t honestly remember the first while at home as I was in a state of numb depression, other than giving Dana blood thinner injections once a day for a month.

It was later concluded that Dana was diagnosed with an extremely rare condition (1 in 200 cases worldwide) of pregnancy induced cushings syndrome. This explained the swelling, high blood pressure and excessive stretch marks. Cushings was diagnosed on the basis of abnormal cortisol and adrenocorticotropin hormone (ACTH) levels, as well as radiographic findings. We just hit the 6-month milestone of losing Jude, and have been supporting each other as best we can, but also facing extreme mental strain. To top it off, Dana is still sick. We are hoping in 2023 that Dana can get one of the abnormal adrenal glands directly above her kidney removed to level out her cortisol levels. This would give us a chance at trying again one day.

I often get asked by people who notice my wedding ring if I have any kids. 

I always respond yes, his name is Jude.

Having a living child in the wake of losing a child is the most elating, surreal, and relieving feeling that a loss parent can experience. It feels like the impossible has been achieved. That a boundless light enters the deepest darkness. So many wonderful, and remarkable, feelings are associated with that moment. With that also comes a lot of confusion. A lot of anger, and a lot of sadness continues to exist. None of that takes away from the gratitude that you feel for the universe having brought you a healthy, happy child that you get the ultimate gift of watching grow. But there are still triggers, reminders, and feelings of panic that accompany your miracle.

Photographs are triggering. Whether it’s family or friends sharing an image of their newborn, or a family portrait. Why does their picture look so perfect? Getting swept in the swirl of negative emotions is out of your control when you’ve lost a child. It’s an exhausting experience (to endure over and over and over again). No one deserves it, no one wishes it upon anyone, but you’re stuck living with it. All of those awful thoughts (and feelings) still occur, exist, and even manifest when you have a living child in the wake of losing a child.

The holidays are what, most strongly and often, evoke this feeling for me. Seeing so many photos of families who have all their children is triggering. It’s important that I acknowledge, and honor, that feeling. I wish could just feel happy. Nothing takes away from the endless gratitude I feel for having my healthy, happy, living child here with me. And nothing takes away the sadness associated with losing my daughter, Lila. Our picture will always be missing her.

You’ll never get over this. You’ll never get past this. You will always be her father. This next year will be hell. It will be full of intense emotions, psychological hurdles, and a pain so deep in your heart that it physically hurts. Your family and friends will be there for you as much as they can. But what you’ve just experienced is something that no one else truly understands. Unless they’ve been through it. You have Jay. You’re both so incredibly unlucky to have the experience of losing your daughters. You’ll meet more dads just like you. There’s a unique, ever lasting, never ending pain in losing your daughter. It won’t destroy you. There’s an endless love. She is your daughter.

I’m writing to you 4 years, 10 months, and 27 days since you lost Lila. It still hurts. You’ll hear that loss is part of life. You needed more life with Lila before losing her. The world is different now. I can’t really remember the way I used to see it before losing her. There is still light. You are living with loss, now. Your context has shifted. Your innocence is shattered. “Shattered” is a word you’ll use a lot when talking to people in these subsequent weeks (months, years…). You’re not shattered anymore. Pieces are missing, but you learn to live fully without ever being “whole.” You’re stronger than you’ve ever been, and more resolved in what is most important in your life. I don’t think losing your daughter caused that change. That would have happened had she lived. That’s the change that occurred when you became a dad. Her father. Lila made you one. I know you don’t feel that way right now, but it’s true. Trust me.

Therapists. You’ll see a handful. All of whom will be uniquely helpful. You’re going to shut down. You won’t talk about Lila often. I get it. You’re still in too much pain. Pain will always exist. There’s nothing wrong with that. Somewhere inside of you, her absence evokes a breathtaking sadness. You’re going to open up and connect with a lot of incredible moms and dads who are living with this same pain. Take whatever time and space you need, always.

Put aside what anyone else thinks. Acknowledge your triggers. It’s not your responsibility to ensure anyone else understands. Hopefully they never do. Keep your compassion and empathy. You will, because you posses those so strongly. No longer waver to ensure the comfort of others. That’s been how you’ve lived before losing her, but you have permission to change that. This experience will open your heart, not close it.

A day won’t pass where you don’t think of Lila. That’s how she stays with you, and is always part of you. Honor her. You still see her, you still feel her, you’ll always love her. You’re her father.

Contributed by Spencer

It was a perfect pregnancy. Well, about as perfect as it could be from a dad’s point of view. Other than the first two trimesters working away from town, and then getting a new job locally in the last trimester, things went reasonably smooth.

We were 37 weeks, and Parker was already so big, every week we saw our midwives we pleaded to be induced. Shannon was in so much pain and kept saying that he needed out, but nothing. 38 weeks and the same story; Shannon pleading that she wanted to be induced – but the midwives were short staffed and our primary one was leaving for vacation in a week so we needed to wait. 39 weeks: We were left with students who could not make a call for induction, and had to be placed under a new temporary midwife – who was not there through our entire pregnancy. 40 weeks and he needed to come out. We went for a 40 week ultrasound to determine what our options were and if everything was still going ok inside. Parker was huge, but having a large baby didn’t tick any boxes to be induced vs. waiting for natural labour to start. Shannon did have high blood pressure though, but again, we were told that it was not a concern.

The high blood pressure continued into the next day 40+1, and we were told to go to the hospital to get it checked. The midwife at the hospital said that the blood pressure was high, but too low to be seen inside and gave us a referral to get bloodwork done. We went and got bloodwork and they said that everything was normal.

Parkers heart beat was tough to find throughout the entire pregnancy, and they always had to get multiple people to find it with a Doppler, so when Shannon started early laboring the next morning at 40+2, we thought things were finally going to plan. Finally. Everything was going as smooth as it could go – for me at least. Back rubbing, lukewarm shower, and whatever else I did; it was all a blur. She had been in early labour for about 6 hours at that point and the temporary midwife and student came to check in on us and see how she was doing. They could not find Parkers heart beat on the tiny portable Doppler they had.

They said we should go to the hospital to get it checked on the portable ultrasound they have and then we could come home and finish early labour in our own space until ready to birth. I packed all the hospital bags in the car just in case. The next hour was the single biggest swing in emotional and mental health in my life. Things went from so elated that we were finally at the end of one journey and ready to start the next with our boy in our arms to soul crushing pain. We got to the hospital and got checked in, the midwives were there and waited with us in the holding room we were taken in to. The doctor came in and got the ultrasound prepped and started looking. She saw Parker, and was looking for a concerning amount of time. She looked at us with a pain in her eyes and said the words that will ring in my ear forever “This is where his heartbeat should be. I’m sorry.” We screamed in agony as they left the room.

The midwives came in and tried to comfort us, but mostly it was an endless stream of teams and screaming crying. Eventually the doctor came in and we didn’t know what to think or say. All we could mutter was “What happens now?” At this point we were transferred out of midwives care and into the hospitals official care with doctors and nurses.

We were told that it needed to be confirmed by an official ultrasound tech and would need to wait for that. During that wait, we would need to decide how we wanted to get Parker out; birth him naturally or have a C-section. How are you supposed to decide that when you know there will be no live baby at the end? Shannon opted to try to birth naturally but with an epidural and induction – stating that we have gone through so much emotional pain and trauma that would hopefully help the physical pain of it. So we waited for hours to get it officially confirmed and went back up to the suite that they had prepped. Shannon still need to go through labour so I tried my best to help support, but in reality I was broken. The epidural failed, but she pushed through and did such an amazing job. When it was time to push I was beside her trying to be involved where I could, but at that point there were doctors and nurses everywhere.

I saw Parker when he was born, he was laid on Shannon’s chest, but because there was so much blood loss and needing to take blood samples, he was taken away pretty quickly. Due to the epidural not working and being on all the drugs the hospital gave her, Shannon was pretty out of it at that point. I had to move away from her and to the side, while they worked to stitch her up and take the samples they needed. Eventually they brought him back in the bassinet and we were able to see him and hold him. He was cold. I took him to the window and wanted to show him the world. The physical recovery was going to be hard for Shannon. And we were eventually discharged from the hospital, but not before getting to spend one last hour with him. Walking out of the maternity ward without a baby and crying was surreal. We got in the car and I was bawling the whole time, still. Looking back, it was not the safest thing to do – but I knew we needed to get home away from the hospital. I remember Shannon asking me if I was ok, and I just said that my only job right now was to get us home safe. Turning into our block we saw someone pushing a stroller, It was an immediate reminder of what we had lost not a day ago.

March 14th being a day we will never forget.

Contributed by Ethan.

Leaving the hospital without your baby is not normal.

You never thought that the L&D wing of the hospital could be the site of so much grief and trauma for your family. You find yourself desperate to leave the place that is now so closely associated with the hardest day of your life. You want to do everything you can to help and protect your wife, but you feel utterly helpless in trying to do so. You go to put the bags back in the car, forgetting that the car seat is still installed in the backseat. You sob as you undo every extra buckle that you had secured the car seat with. You had wanted your baby to be as safe as possible, not knowing that you would never get the chance to protect them. Later, as the nurse wheels your wife out of the hospital room, you hold her hand tightly and tell her to close her eyes as you pass the L&D gift shop. The stuffed animals and balloons have taken on entirely new connotations, bringing a wave of sadness and twinges of anger rather than the profound joy that they are supposed to bring. The silence of the car ride back home is one of the most deafening sounds you have ever heard. You simply hold your wife’s hand and cry together for what feels like an eternity. During that first night back home, the silence somehow becomes even louder. Leaving the hospital without your baby is not normal.

Planning a funeral for your baby is not normal.

Just days after your child’s birth, you go to a funeral home to make burial preparations following their death. Like most new mothers, your wife is supposed to remain relatively immobile in the first few days following the birth. Afterall, she has just completed perhaps themost remarkable feat of human strength possible, on top of having spent nearly an entire year carrying new life within her very being (she has beyond earned the right to relax and recover!). But you have to go to the funeral home and plan your baby’s burial; your wife wants to be there to help plan her baby’s burial. So you pick out an urn, you pick out funeral cards, you pick out a date. As the mortician prepares the financial paperwork in another room, you stare into your wife’s eyes in continued disbelief and both shake your heads in unison. You have no words, but you know exactly what the other is thinking: “We are not supposed to be here.” Planning a funeral for your baby is not normal.

Designing a headstone for your new-born baby is not normal.

It is likely hard enough designing a headstone for a parent, a sibling, a spouse, or even yourself (if you’re thinking ahead). Designing a headstone for a child has the added difficulty of just feeling completely backwards. You can’t help but constantly think of the fact that they were supposed to be the one burying you one day. For any loved one, you will always find yourself asking: “What would they have wanted?” You’re utterly unable to shake the thought of your own headstone: “What would I want if it were me?…It should be me…It shouldn’t be my baby.” In the case of an unborn child, a child that you never got the chance to really know, you find yourself at a complete loss. You haven’t a single idea of what they would have wanted, because you never got to know them in the way you had always hoped. In your mind’s eye, you attempt to fill in the gaps of their personality; you may pray for some divine intervention, or hope for an “a-ha!” moment, trying to draw on any deeper connection to your baby that will make it crystal clear how they would have wanted to be remembered. You do your very best to honour their individuality, their independence as a beautiful and unique human person, but ultimately you take a wild guess at what they truly may have wanted. Because in the end, designing a headstone for your new-born baby is just simply not normal.

————

After losing our beautiful firstborn, Cana Josephine (pronounced ‘Kay-nuh’) at 38 weeks, my wife and I don’t really know what normal feels like anymore. Honestly, as each day passes, I struggle to remember what normal even felt like before Cana Jo left us. As with many other things, I now know that I have to be okay with not knowing, and be realistic with what I do know. I do know that I likely won’t ever feel fully “normal” again; I have to be okay with that too. But through all of the seemingly endless grief and the resulting emotional turmoil in losing Cana, I also do know that all of that pain and confusion is deeply rooted in the boundless love I have for my daughter. If that overwhelming, life-giving love goes hand-in-hand with that gnawing feeling of being “abnormal,” then I hope I never feel normal again. That ocean of love I have for my first baby always overwhelms the pain that comes along with it.

Contributed by Milan

Today is the Pregnancy and Infant Loss Remembrance Day. It’s also the day that our son Liam was due to be born.

Liam was born prematurely on August 9 and died shortly after birth. My wife Evelyn had a routine growth check during her 31st week of pregnancy, from where she was sent to the hospital for close monitoring and eventual delivery. This was sudden and unexpected as Liam’s progress was on track only four weeks prior.

I was on a ship in California for work when it all started. Evelyn called me from her doctor right as the ship was entering port. I got my stuff together and Ubered to SFO hoping to reschedule my return flight home for ASAP. Shortly after arriving at the airport, I got a call from our midwife, crying. Liam came out and his heartbeat was weak and going in and out. “They tried for a long time”, she said. In shock, not yet understanding, I asked “They’re going to try again, right?” “I’m so sorry,” she said after a long pause, “it wasn’t supposed to be like this.”

Within two hours Evelyn and I went from happily and carelessly expecting our second son, to holding his dead body. Within two hours Evelyn went from playing with our older son Nolan in the library and at the playground, to laying in a hospital bed with an empty belly.

My flight was not departing for another 11 hours. All I had was my backpack and photos of my dead baby. I spent hours just sitting and staring at his photos, swiping left, swiping right. And then I was roaming up and down the Harvey Milk terminal, aimless, expressionless, numb. Swiping left and right again. Completely dissociated, I saw myself in 3rd person — the reality is so unbelievable that the only possible explanation is that it’s happening to somebody else. I couldn’t be with Evelyn in the most difficult moments of her life. I couldn’t be with Liam and hold him while he was still warm. The worst were the brief moments when my mind drifted somewhere else, and for minutes I’d forget about what happened. And then I’d remember…

A part of me froze at the moment of Liam’s death and stayed there.

Soon it came the time to let many people know that I won’t be available for a while and why. Every time is extraordinarily difficult because writing about it I re-live it. It took me a long time and strength to let my friends know. I’m afraid that there may be people who care about me and who will learn about what happened by reading this article. I’m sorry.

I haven’t experienced grief until Liam. I never thought much about it. They say that losing a parent is difficult, and losing a sibling is worse. But losing a child has an added element of being cheated. Your child is given to you and then suddenly taken away. I wasn’t prepared for this— how could I be?

Grief permeates the entire fabric of existence and the state of mind. It’s multi-dimensional: I grieve my son who died too early; my wife who was so looking forward to him, and whose life got turned upside down in a mere hour; I grieve the life we would’ve had if Liam had the chance to live; I grieve our two-year-old Nolan who would’ve been such a great big brother to Liam. But most of all, I grieve all the moments, years, and decades of loving Liam the infant, toddler, boy, teen, and adult. Decades that we would’ve had but we won’t, for Liam is dead.

We picked up Liam’s ashes a week ago and he’s finally back home with us. The wait was excruciatingly long and we’re relieved that we can finally be with him whenever we want, and kiss him good morning and good night.