Author: teamsaddadsclub

Submitted by Matt

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

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

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

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

Submitted by Brenton

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

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

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

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

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

A poem by an unknown author:- 

They say memories are golden

Well maybe that is true.

We never wanted memories,

We only wanted you.

A million times we needed you,

A million times we have cried.

If love alone could have saved you,

You would have never died.

In life we loved you dearly,

In death we love you still.

In our heart you hold a special place,

That none will ever fill.

It broke our heart to lose you,

But you did not go alone.

For all our love went with you

The day God called you home.

Submitted by Evan

We had our first prenatal appointment on October 26th, 2021. The doctor used a small sonogram to show us our baby, and all we could see of her was a tiny pulsing pixel on the screen. That was Noelle’s heart. At the time, we had no idea that her tiny and impressive sign of life, would also be her cause of death. On Valentine’s Day 2022, right in the middle of American Heart Month, and on the very day we are meant to celebrate love, we were told that the right side of Noelle’s heart didn’t form correctly and that it would lead to severe complications.

Five days later, as a means of escape, we went to the Botanical Gardens. While visiting the butterfly exhibit, a blue butterfly with a broken right wing landed on my wife’s back. We knew it from the second we left our appointment, but that blue butterfly was further confirmation that Noelle is more than her diagnosis, she is beauty and sadness, healing and pain, grief and joy. That butterfly was a little bit different than all of her friends, and she struggled a little more to fly, but she flew free among her friends and she was most amazing butterfly in the garden. We quickly started noticing butterflies everywhere. On clothes, on posters, on trees and bushes outside. Noelle was with us, not only physically but spiritually.

The next three months were a whirlwind of highs and lows, of hopes and fears. One symptom would improve, and another would get worse. Twice a week, we would walk away from the hospital with another unpronounceable diagnosis to add to Noelle’s extensive list. That would be accompanied by hours our sifting through medical websites and online testimonials, desperately searching for any sign of hope or any success story of babies like Noelle. But Noelle was unique. Her diagnosis was unique, her treatments were unique, and her fighting spirit was unique. The intervals between those doctors visits are when we had the good memories: rewatching the ultrasound videos on loop to see Noelle move her head, eyes, arms, and legs; feeling her dance along to music in the car and while we are shopping; encouraging her to kick us by feeding her lemonade or hot Cheetos.

After countless trips to the hospital, imaging, 2 hour drives for appointments, phone calls, Zoom meetings, and genetic testing, Noelle showed us that she was ready to emerge from her cocoon and take her chances with the outside world.

On May 10th, 2022, 2 days after Mother’s Day, Noelle was born at 10:06 in the morning. She was 4 lbs, 3 oz, 17 inches long and had a head full of magnificent red hair. And just like a butterfly, her life was not measured in years or even months, but in fleeting, awe-inspiring moments. 62 minutes. She fought for her life for 62 short minutes before she decided that it was time for her to rest. She decided it was time for us to stop fearing for her. To most people, 62 minutes is no more than one episode of a TV show or a commute to and from work. But for her mom and dad, 62 minutes with Noelle in our arms felt like an eternity of bliss and serenity.

Just because her life was brief, does not mean it was tragic. When we announced our pregnancy to my parents we gave them a onesie with a card attached that quoted a conversation between two best friends. It said: “How do you spell ‘love?’ Asked piglet. “You don’t spell it, you FEEL it” replied Winnie the Pooh.” We used that quote to announce Noelle’s entrance into the world. Now, one very short year later, we have just passed the anniversary of her diagnosis. And there is another conversation between those same friends from the Hundred Acre Wood: “How does one become butterfly?’ Pooh asked pensively.
‘You must want to fly so much that you are willing to give up being a caterpillar,’ Piglet replied.
‘You mean to die?’ asked Pooh.
‘Yes and no,’ he answered. ‘What looks like you will die, but what’s really you will live on.”
Butterflies pollinate plants and help more of them grow. Without butterflies, there would be far less love being spread, and therefore, less beautiful flowers. Without Noelle, there is certainly a lot less beauty in the world. But there doesn’t have to be less love.

Noelle Harper Cipra. We will follow your lead and emerge from this experience stronger than ever and we will be transformed by your birth in a way that we will one day fly alongside you among the clouds. Because you are still our daughter, and you are still a granddaughter, and a niece and a cousin, a friend, and the prettiest angel in Heaven.

So to all of the parents out there reading this who have been through a similar experience, I pray that you acknowledge your child’s beauty every time you see a butterfly (or any other sign that they are close), acknowledge their strength every time you feel scared, and acknowledge their love every time you feel your own heart beat.

We love you Noelle. And we miss you more than words can describe. And most of all, we are so proud of what you have done and everything you will do.

Love, Evan (Noelle’s Dad)

Submitted by Ethan

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

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

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

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

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

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

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

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

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

Submitted by Rob (and from 4theo.co.uk)

For as long as I could remember the one thing I wanted in life was to be married and have children, so when Rob and I discovered that we were excepting we couldn’t have been happier. I loved being pregnant knowing that inside was a beautiful little baby, I had a text book pregnancy, the excitement was building as we had decided not to find out the sex. Making it 39 weeks pregnant we thought nothing bad could happen at such a late stage and that as I’d had no problems and all my pre-natal meetings were fine. On Monday 3 August I had a midwife appointment, I listened to the baby’s heartbeat and all seemed OK. She tested my urine and said I had a trace of protein but said that this is normal for this stage of the pregnancy, however once I had left the appointment I went in to Dr Google mode which said protein in the urine could be a sign of pre-eclampsia to be honest I really didn’t think that much into it as the midwife had said it was normal at this stage. On Wednesday 5 August I had a really bad headache, I tried everything to shift it but nothing would work, the baby had been moving but not as normal it was more a jerky kind of movement. Something just didn’t feel right. After chatting with Rob I decided to call the midwife unit. I explained about how I was feeling and they said for us to come down. This was about 10pm, all I had in my head was the pre-eclampsia I had been looking at earlier in the week.

After a little wait, we were seen. I had my blood pressure taken several times, looking back now its because they couldn’t believe the readings they were getting for someone that appeared to look so well, in fact I got up and walked across the labour ward into another bed which they couldn’t believe. I really didn’t think anything was wrong, then suddenly they were a lot of people in the room asking a lot of questions, when we asked what was going on they said I had very severe pre-eclampsia and it was said that the baby would need to come straight away. Shear panic set in and I got really upset as I was so worried about the baby, not really fully understanding what pre-eclampsia was, I didn’t even think that there could actually be something wrong with me, suddenly I was being put into a gown and cannula’s were being inserted, into both wrists, elbow and my foot.

It took a while for them to insert a cannula in my wrist, I later found out it was because my veins had started to shut down, I was just wishing they would get on with it and get our baby out! It was then decided I would need a general as this would be quicker – which was my worst nightmare not to be able to see my baby being born and being separated. I was wheeled down to the surgery and I said goodbye to Rob. They initially tried to put me to sleep but my cannula had tissued so they had to try somewhere else, all the time I could hear the baby’s heart rate dropping, I just wanted this nightmare to be over!!

The next thing I remember is waking up to a nurse and asking what I had, she said it was a boy and your husband has named him Theo. I was so pleased, next I remember Mum and Rob being over me and I asked if he was OK, and mum told me he was really poorly.

Once I finally came around it was explained that Theo has stopping breathing inside of me, as my blood pressure was so high (216/110) that this had been forcing the body to pump the blood to him. Once I was in hospital, before they could deliver Theo safely they needed to bring my blood pressure down as I was extremely close to having fits and a possible stroke, something I didn’t realise at the time, as they brought it down, this in turn then cut the supply to Theo. They had to resuscitate Theo for 35 minutes before they finally found a heartbeat. Thankfully the consultant was on call so therefore needed to make her way into hospital if she had been in, they would have stopped after 15 minutes meaning we wouldn’t have met out baby boy alive.

Once they found a heartbeat he was whisked off to the Neonatal ward. As Theo had stopped breathing for such a long time he suffered a massive brain injury and he probably wouldn’t survive if he did then he would be severely brain damaged. They actually discovered that he could breathe by himself when he came down to the ward when I met him and have a cuddle at about 5 hours old. He managed to live for 44 beautiful hours, where we got the opportunity to change him, bathe him and see his ridiculously long toes and to spend some time with immediate family meeting and saying goodbye to our baby.

I stayed in hospital for a week after Theo was born as I was so poorly, I had to have 24 hour midwife care for some of this time and was on a magnesium sulfate drip for the prevention of seizures. My blood pressure was difficult to control and I ended leaving hospital taking three different types of blood pressure medication to control it, having to take medication every three hours until gradually it could be reduced as my blood pressure started to come down. Going through this type trauma has left me feeling extremely anxious, still even to this day.

It breaks my heart that up until this point Theo was a healthy baby boy and it was just this horrible disease that killed him. All the signs of pre-eclampsia are unfortunately also normal pregnancy related problems, such as swelling of the feet, face and hands, headaches, pains just above the ribs and vision problems. My blood pressure had been normal on the Monday when it was checked and its scary to think that something like this can literally spike within days. I was told that I was lucky to be alive, if I hadn’t gone in that night I would have passed away in my sleep – this is something that changes you as a person and something that even today I really struggle with.

Once you have had a miscarriage, stillbirth or neonatal death the joy in subsequent pregnancies is diminished. The innocence is gone, you realise that death can happen and the fact that you might not be able to take your baby home. Being pregnant was something I loved so much, and now I dread the thought of future pregnancies knowing that there’s a chance that it could happen again.

My message to any expectation mums out there is to be aware of what is happening with your body and to always trust your instincts, if something doesn’t feel right get straight down to the midwife unit. Please please never listen to people telling you what you should be feeling, it’s your body you know what is right for you and your baby. The long term dream would be that there are more scans offered in pregnancies, especially in women’s first pregnancies as you don’t know how your body will react. Neither my mum or sister had pre-eclampsia so I was classed as low risk. I think all first pregnancies should be treated as high risk until a base line is established for that woman. I was told that Theo had been struggling for a couple of weeks and he had stopped growing (he was only a tiny 4lb 15oz of perfection when he was born – again all my measurements had been normal) if I had been treated as high risk and if I had a scan later on in my pregnancy – in the third trimester then Theo could still be here today.

If the money raised and sharing our story helps just one person then they would mean the world to us, if we could stop one person from going through this excruciating pain of losing a child then our job is done.

I don’t think most people truly understand how much is lost when a baby dies. You don’t just lose a baby, you also lose the 1, 2, 10 and 16 year old they would have become. You lose Christmas mornings, loose teeth and first days of school. You just lose it all. Not knowing what Theo would have been like as he grew up is just sometimes just to hard to even think about. It’s true that when you lose a child, you are haunted with a lifetime of wonder. I do believe that I am the lucky one, the lucky one that knew Theo, who carried him and whose life will now be divided into a before and after because of him. One thing I do know about our baby boy was he was an incredibly strong little fighter, something his mummy and daddy are still learning to do. We will keep fighting to keep Theo’s memory going in a hope that it will help someone else.

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)

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.

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.

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.

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