stories.

Alice Josi the Rockstar

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.

Picture (im)perfect

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.

To Me, That Day

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.

A Day We Will Never Forget

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.

Normal

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.

Losing Liam

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.

October 15th

October 15th, “Pregnancy and Infant Loss Remembrance Day,” causes me mixed emotions.  You see, every day is October 15th at my house.

Every day starts when I say “Good morning” to Izzy, and every night ends when I tell her “I love you.”  As we all are acutely aware, being a loss parent isn’t confined to a single day of the year.  A loss parent lives with this pain daily.  That’s why Sad Dads Club started, and it is the foundation on which this engaged and supportive community continues to grow.

The overwhelming number of “themed” days contribute to my feelings.  Here are a few of my “favorites”:

1. January 22: “Answer Your Cat’s Questions Day”;

2. February 4: “Work Naked Day”;

3. March 24: “Chocolate Covered Raisin Day”;

4. May 6: “No Pants Day” (people prefer nudity on Fridays); and

5. July 10: “Teddy Bears’ Picnic Day”.

You get the idea.  If you want to see other absurd days, just click on this link.

October 15th, a day that holds so much importance within our community, shares itself with “I Love Lucy Day” and “Sweetest Day.” I apologize to lovers of classic television and people who like to shower their significant others with candy,  but it lessens the impact of the day to me.

I love you, Izzy, and October 15th will serve as another opportunity to honor you.  I am grateful for that.  However, in a world filled with themed days, I just wish October 15th stood alone.

Take care of yourselves.

Chris

To My Wife

I don’t know how you did it. Everything that day. How you physically delivered our daughter into the world knowing she’d never see it. Our hearts broke together that day. But you alone, you delivered our daughter. You endured hours of her inside of you unalive. You went through the physical battle of having her taken from you. From your body. And then, you dealt with your body responding to giving birth. All of the physical signs of having a baby lingered inside, and outside, of you. That physical ordeal, compounded with the emotional toll, I’ll never know. And I’ll never not admire you for enduring that. That is a strength few people have had to exercise.

Fuck. That day. It’s so visceral, yet so hazy. It feels so close, yet so far away. But never really that far. I can always dive back into that day as though I’m still there. We sat in our hospital room. Waiting for hours. You held me while I sobbed against your stomach wishing I’d feel her move again and this would all have been a terrifying, and awful, mistake. It wasn’t. It was our reality. It is our reality. This is part of our life forever.

Life isn’t fair and it’s hard for everyone. It’s particularly hard for parents who have lost children. It’s confusing, dizzying, and often times maddening. A simmering, justified rage lives like a storm inside us. One that swirls with such chaos and intensity, it can be devastating. That storm will always pass, and it will return. We’ve been honest with one another about our grief. About our struggles. And about our fears. I’m proud, and relieved, we’ve been able to find the beauty in the world and embrace laughter and happiness again. I’m proud you’re my wife. 

Our daughter would be 5 at the end of this year. I know we’ll celebrate that, and her, everyday. We are so lucky to have our son, but that doesn’t mean we don’t miss our daughter, or that she’s any less a part of our family. Our inception, and journey, into parenthood has been uniquely challenging. I’m so glad, and lucky, I have such a strong partner by my side.

I love you,

Your adoring husband (forever)

Rainbow Baby Story Pt. 1

After losing Bella on 1/31/17, our world went dark. Figuratively for me. Literally for Elly – when she looked up at the sky, she literally saw black on the sunniest and clearest days Maine had to offer that year. 

It was as if storm clouds were always gathering above us no matter where we went. 

We had moved out of our East End apartment in Portland and were living in Brunswick, a quintessential New England college town where we first met as undergrads 13 years prior.   Senator Angus King and his amazing wife Mary Herman had heard about Bella and our need to move, and generously offered us their beautiful home for the summer. As they tell it, we did them a favor by house-sitting while they were traveling between Washington and their summer home farther up Maine’s rocky coast. The truth is that they saved us. They gave us a change of scenery and a second chance at happiness. 

In Elly’s first OBGYN appointment after Bella’s stillbirth, she immediately asked the doctor if and when we could star trying to have another baby. “June”, the doctor replied. “June what?”, Elly asked wanting a more specific date to look forward to. I don’t recall the exact date, but I’m confident Elly does. She had circled it on a paper calendar and would refer to it regularly. It gave her hope amidst the darkness in those early days and weeks. 

By the time June rolled around – four painful months later – we were living in our Senator’s home – you know, as one does – and were faced with the awkward realization of what would come next and whether or not that was appropriate. You get the point. 

Any couple who has tried to get pregnant knows that it’s not always as easy as they make it seem in middle school Sex Ed. I went to an all boys Catholic school, so I never did the whole condom on a banana thing, but suffice it to say that the closest thing to Sex Ed. at my school was the concept of abstinence.  We were led to believe that if we were even in the same room as a girl, she would immediately get pregnant. So the idea of trying to get pregnant was completely foreign to me. I had no idea women could track their menstrual cycles to determine the best opportunity to conceive. While Elly and I have been incredibly fortunate not to struggle with infertility, it took us a couple of tries to get pregnant after Bella. Three to be precise. And it was agonizing. Each month, the anticipation was palpable. We were ecstatic about the prospect of Elly getting pregnant again, and devastated each time a test came back negative.  That summer was a rollercoaster of emotions.

We had been invited France that August for the wedding of very good friends from business school and initially thought we’d be going alone, leaving our 2-year-old and 6-month-old at home with grandparents. But that all changed after Bella’s passing. There was no way we were ever letting our only living child out of our sight ever again. The bride and groom were incredibly understanding and said we could of course bring Jack. 

On our way to Bordeaux, we had a brief layover in Lisbon, Portugal where Elly decided she should take a pregnancy test. Having not brought one from the US, she purchased a Portuguese test at an airport pharmacy/convenience store. After peeing on the stick and attempting to decipher the Portuguese directions, it wasn’t immediately clear what the pink lines meant. So, we flagged down a random traveler who appeared to speak the local language, shoved the urine-soaked test in his general direction and asked him if it was good news.

“Depends,” he quickly retorted. “What are hoping for…?” Fair question. He smiled and told us the best news we had received in months. We were pregnant! We hugged each other. We hugged Jack. We hugged the random guy. We were elated! 

Elly then quipped, “Well, I guess I won’t be having any wine in France!”

We were so happy and yet terrified. While we knew that Elly didn’t have any underlying health conditions that had caused Bella’s tragic death at 40.5 weeks, we still worried that it could happen again. I remember reading an article about stillbirth that quoted someone who had suffered two separate full-term losses. “No. That’s not possible. People can’t lose multiple babies,” I blurted out. Thankfully, Elly didn’t hear what I actually said. I spent the next 9 months reassuring her that, of course, we wouldn’t lose another baby. That doesn’t happen. The truth was that I no longer trusted my instincts and belief that positive things happen to positive people. 

France was the perfect distraction from our anxiety, but it all came rushing back almost immediately upon passing through customs in Boston.  Vacation was over and we needed to figure out a way to get through the next nine months.