Hadley Maeve

Submitted by Eric

My partner, Jill, and I struggled with infertility for several years before we finally received a positive pregnancy result. This day was the happiest day of my life. However, it would be short-lived. During the fetal anatomy ultrasound at 19 weeks into the pregnancy, we learned that our daughter, Hadley Maeve, had several severe brain malformations. We learned over the next four weeks, her prognosis was “grim”, and if she were even to make it full term – which they believed to be highly unlikely – she would have a shortened lifespan; would likely not be able to see or hear; would not recognize us; would be unable to sit, stand or walk; would never live independently; would undergo many medical procedures in order to keep her alive, none of which would help to improve her condition; would have uncontrollable seizures which could not be ameliorated by medication; would not be able to breathe or eat on her own; and would be in pain and suffering during the entirety of her short life.

So, my partner and I made the decision that no parent should ever have to make and chose to spare her any pain by inducing labor early at 23 weeks gestation.

One of the things I kept thinking of when I knew that Hadley wasn’t meant to stay in this world, was that I would never get to feel her hold my hand or finger. I was so jealous that my partner was able to carry her, and have that contact with her, but that I would have nothing. On February 19, 2021, at 2:08 p.m., our beautiful Hadley Maeve was born alive, if only for a few precious moments. In those moments with us, as she lay on Jill’s chest, she recognized Jill’s touch, and squeezed my finger. My heart melted, and I think about that amazing gift she gave to me every day. Hadley passed shortly thereafter, and we spent the next 48 hours with her, holding her, caressing her, dressing her, swaddling her, reading to her, singing to her, taking pictures with her, and cherishing every moment we could, knowing that we only had a short time to create a lifetime of memories with her.

I tell people that when a parent loses a child, their entire world turns upside down. I’ve described it to others as feeling as though a piece of your soul has been pulled from your gut. Parents are not supposed to survive their children. In my naivete, I believed that to be a truism, but many of us who have peeked beyond this veil of ignorance know this not to be so. As a society, we are not taught to grieve, to express the level of sorrow that accompanies loss. This is in part due to how Western culture deals with death, dying, and grief. The Western approach – incorrectly – has been to “fix” those who are grieving, believing it to be a deviation from the norm; something that is abnormal; something that needs to be fixed. In actuality, grief just is, it just needs to be, and it is a part of all of our lives, whether we chose to admit it or not. The truth is that grief and loss make indelible marks on each of our lives, shaping us into who we are at this very moment.

After our loss, we reached out to Carol McMurrich over at Empty Arms Bereavement Support. This organization has been integral in our grief journey. I’ve been fortunate to be a part of several closed dad’s groups through Empty Arms, and nearly two years out from our loss, have now shifted into the role of being a facilitator of that group. I am honored to fulfill that role and continue to learn from fellow loss dads every time we meet to discuss dads’ unique grief experiences.

Apart from Empty Arms, my time in nature and my work with the elements, and energy medicine have been fundamental in my grief journey. I enjoy working with other practitioners to develop and host workshops for fellow loss parents. Through ritual and community, we work to restore balance in our lives and to visit our healing process.

If you’re interested, I would be honored to speak with you and to share my experiences and journey with you and your audience through the podcast. Whatever I can do to help and support fellow sad dads everywhere…I’m in!

Thank you so much for creating this space to honor the unique experience that loss dads go through.

Many blessings to you.

Warmly,
Eric Atstupenas (Hadley Maeve’s Dad)

If There Is Light, It Will Find You

Submitted by Albert

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.

Harper Grace

Submitted by Brett

My daughter, Harper Grace, was delivered stillborn on November 3, 2022. The day before was like any other – I went to work where I had a conversation with a coworker about my excitement for our impending arrival the day after Thanksgiving and my wife stayed home with our two-year old daugther Emerson. That night, after putting our daughter to bed, my wife told me that she hadn’t felt our baby moving and that something was wrong. She went to the ER by herself while I stayed with our daughter. Within a few minutes of arriving at the hospital, my wife called with the devastating news – our baby didn’t have a heartbeat. The remainder of the night is a blur – my parents rushed to our house to babysit Emerson while I gathered myself to go to the hospital so that I could be there when our daughter was born. Delivered via c-section, I vividly remember how quiet the operating room was – there was no sound of a baby crying – only the voices of the doctors and nurses as they worked and the quiet sobs of two grieving parents.

Now, two months removed from our loss, life around me is slowly returning to normal. I’m returning to work, chores still need to be done, and Emerson is getting bigger each day, but yet, life remains at a standstill as I wonder if the void of Harper will ever be filled. I’ve grown to accept that there will be days where I need to hug Emerson a little closer or need to slip away and cry – those emotions, any emotions, are okay.

To Harper: Daddy loves you. Even if you aren’t with me physically, I commit to living my life with you always at the front of my mind. I will be the best father and husband possible because that’s what you deserve.

To Emerson: I can’t imagine how confusing the last few months have been for you. So excited to welcome a sister in to the world, you would climb onto Mommy’s lap and kiss her belly. You are an amazing big sister with so much love and joy. You bring me to my knees with both sadness and love when you ask to kiss and hug the urn that contains Harper’s ashes. Mommy and Daddy love you so much.

To Grieving Parents: My heart aches for your loss. Find comfort in each other and in life’s little joys. Grief knows no timeline – don’t rush it.

To Grieving Fathers: Welcome to a club you never want to join, but if you do, you’ll be surrounded by the only men in the world that have been in your shoes. Feel your emotions – sadness, anger, disbelief – any and all feelings are acceptable. Seek out support when you need it – you can’t tackle this on your own. Lastly, love like you have never loved before. Live life like you don’t know what is happening tomorrow. Remember, you are not alone.

Our baby girl is beautiful, she is loved, and she is always with us. Harper Grace – Daddy loves you, Daddy misses you, and I’ll see you again one day.

Acknowledgement

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.

Holiday Season

I wanted to yell, “CONGRATULATIONS!!!”  I wanted to run over and give them both huge hugs.  I wanted to smile and uncork the champagne.  But most of all, I wanted Izzy.  

My brother got engaged to his wonderful wife on Christmas Eve 2018, only a few months after we lost Izzy.  I am sure I mustered up a few congratulatory words, but I’d be lying if I said I remembered.  I was in the room physically, but emotionally I was in my own world.

My wife and I opted out of Thanksgiving that year, and if not for the engagement, we would have stayed home for Christmas as well.  

How can you be happy when you are drowning in your own grief?  The answer, at least for me, was that I couldn’t.  I wanted to be there for my brother, but all I could think about was how Izzy wasn’t there.  We were a family of three, but only two of us still lived in this world.  

That holiday season was pure hell.  Not only for my wife and I, but I suspect for my family as well.  One son is celebrating a huge milestone, while the other is stuck in a pit of despair.  Everyone did their best to balance an impossible situation.  I will always be grateful for that.

For those who are navigating this for the first time, please know it is ok not to have all the answers.  My advice would be to prioritize yourself, your spouse, and, should it apply, your living children.  In short, it is ok to be selfish.  You can do more damage trying to appease others’ expectations.  Most importantly, those who love you will eventually be understanding.  “Understanding” is different than “understand”, it is a privilege not to understand.

Take care of yourselves.

Chris  

Never

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.

Re: Thanksgiving thoughts

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

Miracles

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.

Alice Josi the Rockstar

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…

Jude

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.