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Death + Revival + Coffee
Death + Revival + Coffee
Ep. 001: Our Story
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Infant loss, loss of a parent, miscarriage // Bits and pieces of my story will be woven into each future episode of D+R+C, but today I'm intentionally diving in. Our stories are the foundation of our experiences; the hard parts, easy parts, mundane parts all make up who we are right now. And who you are right now matters.
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Ep. 001 Links:
Welcome to Death + Revival + Coffee. I'm your host, Joanna and you're listening to episode one.
Death happens, but we're still here. So let's figure that out together. Death + Revival + Coffee is a candid conversation about living life and finding hope in the shadow of death. You're carrying a lot, but we have space for it. So rest for a minute. I'm glad you're here.
Welcome to the first official episode of Death + Revival + Coffee. Before we get going, there are four things that I want to acknowledge:
The first is that every interaction with death is as unique as the person who died. Our experiences have all been shaped by the unique ingredients that make up our lives. For me, death was experienced as a 30ish year-old Christian, married, straight white woman living in Minnesota with a mixed Western-European heritage influencing my beliefs and rituals surrounding death. I've lost children and a parent along with multiple grandparents and other familial deaths growing up. I'll be getting more into my story in a bit, but I just wanted to acknowledge that our experiences are likely very different, but that in no way values one over the other. Whatever your experience looks like, it is honored here.
Second, I am not a death professional. I definitely don't have everything figured out. And there are things that I know that I have done wrong. I am not a therapist, Pastor, a doctor, a death doula or a hospice worker. I am an average person sharing my thoughts and experiences in the hopes that something might resonate with you, knowing full well that not everything will.
Also, out of respect for the sacred nature of end of life, you won't hear me talk about experiences or traditions that are not of my culture. I want you to hear about those traditions and experiences from members of their respective communities to ensure that they are allowed to manage how such sacred elements of their culture are being discussed. I will definitely share resources and point you to individuals within different communities. And maybe we'll even hear their perspective in an interview. Just know that any silence on my part has been respectfully intentional.
And lastly, I can't speak authentically about my experience with death without talking about God. He is going to be a part of this conversation. But I understand that when it seems as though God has just opted out of your life, that relationship can be complicated and really challenging. This is a safe space for that. If an episode lends itself to a deeper exploration of faith, that part of the conversation is going to be kept in the latter half of the episode. That way you can choose to enter into that spiritual conversation when your heart is open to it.
Regardless of the differences in our stories, they all contain invaluable insight that can help us collectively figure out how to navigate this new version of normal.
Death is so much more than a body simply ceasing to function. We have buried children, spouses, and loved ones.
But at the same time, we've also buried shared memories and dreams for the future. There are unanswered questions, unsaid apologies, we've lost belief systems or a version of ourselves. And we've definitely lost normal or whatever that means.
To put it lightly, death is a multi-faceted hot mess. There are physical, spiritual, social and emotional bombs exploding left and right leaving us covered in this traumatic glitter that society just chooses not to acknowledge.
If you are in a situation where the death is anticipated, there's also anticipatory grief which is different from post-death grief. And if the death was sudden or unexpected, there's a unique flavor of trauma to that experience as well.
As soon as your person dies, you're dropped into doing things like funeral planning, making financial decisions and figuring out what in the world to do with all of their stuff, all while simultaneously barely being able to function due to the very real physiological effects of acute grief.
Death and grief can be incredibly isolating for many reasons, but primarily due to the fear that is perpetuated by our silence around it. We are afraid of death. We're afraid of the unknown of acknowledging the fragility of our own lives of doing or saying the wrong thing when we're supporting somebody who is grieving.
This is why I created Death + Revival + Coffee. To talk about our dead babies, our dead parents, our dead loved ones. To talk about pregnancy, parenting, and just living after loss. To talk about trauma and grief and ways we can begin to heal while continuing to honor our experiences.
But before we get there, I wanted to take a bit of this first episode to share my story so you know where I'm coming from. I could talk about our story for days, because death has this way of turning details into diamonds. But rather than tell you the color of the nails of the nurse that held my hand in the OR, I'm going to give you the 10,000-foot view. If details are your thing, and you really want to know the color of her nails, you can visit my blog Hello, Norah where I have documented our entire experience over the past few years. I'll put a link to it in the show notes for you.
I mentioned before that I experienced a few deaths while growing up but it's been the experiences I've had with death over the last couple of years that have most strongly led me into this conversation:
- Our first child, our daughter, Norah, died of complications of Trisomy 13, which is a rare chromosomal disorder, at just five days old.
- Two days after we buried Norah, we learned that my mother had stage four lung cancer caused by a genetic fluke, which led to her death less than a year later.
- Then in the fall of 2020, in the midst of the coronavirus pandemic, I miscarried our third child, August, when I was roughly nine weeks pregnant, and I had a pretty rough physical journey through that which I am still in the process of healing from.
Each experience has been unique. I would never say that one has been harder or easier than the other because they each have been so different. There have certainly been things that I've learned each time that have carried into the other experiences, but honestly, more often than not, I found myself arrogantly thinking that I knew how to handle death, and then being subsequently knocked off my high horse by reality.
With Norah, I was the most naive, so I think her death resulted in the biggest paradigm shift. It forced my eyes open to the reality that bad things can happen not only to myself, but to my family and to my babies. It made me question everything I understood to be true about God, and the order of the world.
Before I was pregnant with Norah, I had these grand plans for what my motherhood was going to look like. I had dreamt of becoming a mom from my very first baby doll and I had held motherhood up to be this ultimate, feminine, goddess-like experience. When that mixed with my crunchy mama ways, I had set a pretty high bar for myself, including a fully unmedicated birth.
It should be noted that I am a type-A perfectionist that does not do well with changing plans, so I like to think that when Norah and God saw my ideas, they both laughed hysterically.
When Lane and I walked into the 20-week ultrasound with Norah, we were classic first-time parents solely focused on finding out if we were going to have a girl or boy. While we did learn that we were having a girl, we were also met with a laundry list of significant concerns. Our midwife followed up with us afterwards and that was the first time that we heard the term Trisomy 13.
We each have 26 pairs of chromosomes in our DNA, and these chromosomes direct the function of every cell in our body. When a trisomy occurs, there's not a pair, but three, the number of the trisomy simply refers to which chromosome has been triplicated. Trisomy 21 is what we commonly refer to as Down syndrome, Trisomy 18, 13, and 9 are other, typically more severe, variations. And the chances of being born with Trisomy 13 are roughly one in 16,000. It's also a snowflake condition, which means that the way that it manifests is truly unique to the individual. Some children with trisomy 13 live to be teenagers, while others don't survive pregnancy.
Trisomy 13 can result from an error and one or both of the parents' DNA which increases the odds of future children having it as well, or it can be a genetic fluke, which is an error that happens as the DNA is coming together for the very first time at conception. The latter is what happened in this case, they called it a 'genetic fluke.'
The only way to diagnose Trisomy 13 is with a DNA test via blood done after birth or via amniocentesis during pregnancy. There are genetic blood tests offered in early pregnancy that can also be roughly 95% accurate at anticipating a trisomy but those are not considered diagnostic. We hadn't done that test initially, but after our care was transferred out of the birth center to a high-risk maternal-fetal medicine clinic we did, and oddly enough, it came back with perfectly normal results. Yes, our results were incorrect. And yes, this is incredibly rare.
We were living statistical anomalies, and because of this, we chose to forego the amniocentesis and waited to test Norah's blood when she was born, which was a decision made with the full support of our medical team. We had been told that there was a 1 in 100 chance of something going wrong during the amnio, and when you're going through an experience with likely odds of one in 16,000, 1 in 100 sounds like essentially a sure thing.
Norah was generally expected to make it to and through birth, even with her list of complications, and although my pregnancy was highly monitored, my body did a wonderful job of carrying Norah. I loved being pregnant, and I loved getting to know our spunky little human whose personality was absolutely undeniable, even to our medical team well, before she was born.
We knew Norah’s time earthside was going to be complicated, and we had been preparing for that as best we could. Regardless of her diagnosis, Norah would require at least three major surgeries shortly after birth, including open heart surgery and surgery on her spine. It wasn't until after we received her official Trisomy 13 diagnosis just a couple of days after being born and we saw how her body was functioning that we knew her time on earth would be significantly shorter than any of us wanted.
Norah was born alive via c-section on March 1st, 2017. We joke that our first meeting was like two TVs hugging as we were both still attached to so many monitors.
Her birth was as beautiful as it could be, and the team that carried us through it was absolutely incredible. But even so, I carry a lot of trauma from that experience. From the urgency section to thoughtless things said to me by a doctor to recovering on a maternity floor without my baby, a lot of the details from that day feel fiercely important, but I don't know if that's because they are or simply because they hurt so much.
Norah spent all of her short life in the NICU at Children's Hospital in Minneapolis. After I was discharged from the Mother Baby Center, which is part of Children's, we stayed at the Ronald McDonald House there which is located within the hospital, just down the hallway from the NICU. Friends and family were able to come visit and meet Norah, she was baptized, Now I Lay Me Down to Sleep did family photos for us. Those five days were truly the most precious gift.
When we received Norah's Trisomy 13 diagnosis, Lane and I both begged God to take away any hint of uncertainty. If Norah was not going to survive, we wanted him to make it absolutely irrefutable. In Norah’s situation, we would be responsible for making a variety of decisions on her behalf and we wanted the ultimate decision on her life to be in God's hands – not ours, not the doctors. I am so broken-heartedly grateful that he chose to answer that prayer.
By the end of the fourth day of her life, Norah’s body was very clearly shutting down. We went to bed that night fully expecting a phone call from our NICU nurse. But after being blessed with a full night of sleep, we woke up on the morning of the 6th knowing that it would likely be her last day, and Norah died in her daddy's arms that afternoon. Hours later, we left the hospital without our baby and drove home to an empty nursery.
Norah’s celebration of life was on March 13, (the date was not intentionally chosen by us, but after we shared it, we learned that March 13 happens to be Trisomy 13 awareness day because you know, 3-13) I like to think that Norah helped plan her party, but it really comes down to a God that doesn't forget the details. We buried Norah in a small family cemetery out in the country the following day.
Two days after burying Norah, my parents Skyped me from a hospital bed to share the news that mom had been diagnosed with stage IV lung cancer and was given 9 months to live.
If I'm being honest, so much of that year with mom is still a hazy blur. I have to work really hard to dig up memories from it and I know that that's due to it being layered immediately on top of Norah's death; I was tossed right back into anticipatory grief with no break in between.
My experience with Norah left me in this place of being oddly comfortable with death. Not welcoming it, but the heavy space we were in was very familiar. In a way, this allowed for an entirely different level of openness with mom while she faced death, as I didn't have to take time to transition into my grief; I was already there. So from the beginning, we were able to have really candid conversations about everything.
I'm an only child, so you'd think I'd be responsible for a lot in that situation. But my mom on top of being the most thoughtful person I knew (I mean, she was actually diagnosed a month or two before telling us but wanted to give space for Norah) put my type A personality to shame.
Mom planned her own funeral down to which bars would be served and why and she had almost every financial and logistical decision made months before she died. Part of it was her personality, but the majority of it was done out of love. She had done a significant amount of caregiving for her parents as well, and was well-versed in the logistical nightmare that can follow death. She did everything she could to try and lighten that burden on us.
Now, dad also did an incredible job as caregiver and her efforts don't discount how painful, difficult and honestly traumatic that was for him.
All of her planning is something that I am eternally grateful for, because there were very few instances where we were left wondering what she would want and I know that so many people have not had nor will ever have that experience. Friends of hers who were local artists created her urn and vault which she even placed as decoration on the mantel for weeks before she died.
All things considered, mom did really well up until about the last few weeks of her life, with the last three days being the most intense. Several of her siblings were able to be present (she was one of nine kids) along with my father and my husband and myself to walk her home.
The last thing I remember mom saying was, "I want to see the sun." Mom had always enjoyed napping in the sunroom, which is where her bed had been placed when she was sick, and we had the blinds drawn that day but from that point forward, we kept them up.
Mom had this love of nature that practically ran in her veins. She had spent multiple summers working at Glacier National Park when she was younger, and now I feel her in the wind and the sunshine and the rain.
Mom died as the sun rose in the early morning of February 3, 2018. And the funeral she planned went off without a hitch. The following year, on the day before my mother's birthday, our daughter Lora was born. We named her after my mother, Lori, and Norah.
Pregnancy and parenting after losing a child is a whole thing, as is pregnancy and parenting after losing your mother. We were doing everything for the first time, but this was our second child. The struggle of figuring out how to parent was and still is constantly amplified by the fact that we should have already done this. And not only is our first child dead, the best person in the world for helping to navigate early motherhood, my own mom, is also dead.
It was the newborn phase with Lora that finally pushed me to seek therapy. Up until that point, I felt like I could somewhat manage things, likely because I had full control over my schedule. But once Lora was born, all that space that I had been able to give my grief went out the window, and the effects of those few traumatic years were just magnified by an extreme lack of sleep.
Pregnancy and parenting after loss also carry a huge amount of shame, and we don't talk about that much either. Here I was, going through a healthy pregnancy raising a healthy baby in the midst of what should be my happiest moments, and I was painfully broken and really struggling. I was no longer capable of managing my grief. I needed tools and support. I needed help to survive.
Therapy has been the best thing I've ever done. I will never push someone into therapy because you have to be open to it, but I will 100% recommend therapy to anyone who has experienced or is anticipating loss. It's never too late to start. It took me three years to make my first appointment and now looking back, I wish that I would have started going immediately after that 20 week appointment with Norah. For some people. therapy may be just a few visits a few weeks or a few months, while for others it may last a few years. It's worth it to put a few tools in your toolkit that are tailored not only to your specific experience, but to how you process life.
The tools I learned in therapy helped immensely when I miscarried last fall.
In August of 2020. We found out that I was pregnant with our third child. At about eight weeks I started experiencing some light bleeding and I hadn't experienced that with either of our previous pregnancies. I know that occasionally light bleeding can be harmless but after being invested In the loss community, I was acutely aware of what it could also mean.
About a week and a half later, after multiple appointments, it was confirmed that my body was indeed miscarrying the pregnancy. I chose to go the route of having a D&C instead of miscarrying naturally at home because we live an hour away from our preferred medical team now.
We named our baby August in honor of the month we spent joyfully knowing their presence and consider the date of my first D&C September 8th, 2020, as their birth/heaven day.
Unfortunately, the D&C was not performed by my normal doctor and after I continued to bleed for a full three weeks after the surgery, it was finally deemed unsuccessful, and I had to have a repeat procedure. The night before my second D&C, my body started going into what was the beginning of it trying to naturally miscarry what remained, so I experienced full contractions and more.
After another ultrasound the next morning, they chose to continue with the second D&C as my body hadn't completed it on its own. This time they were going to do a hysteroscopy, which basically just means they're using a camera to aid them, to ensure that everything was removed. During this second surgery, I experienced significant blood loss and had a much tougher time immediately recovering. It should have taken less than an hour for me to be ready to discharge but it took like five.
Based on my first surgery, I had planned on going back to work the next day, which was easily the worst decision I made. I could barely function, I really needed to have made space to physically recover from this month long ordeal, but I was so desperate for any sense of control in a completely out of control situation, that I threw myself back into work as if productivity could somehow heal the pain.
Traditional Medicine tends to just kick you out the door after miscarrying with a, “You're super fertile now, so we'll see you soon!” message. There was no mention of the fact that my body was essentially in a postpartum state trying to down-regulate hormones, while also being in acute grief, which are two very intense physiological and psychological experiences.
I was broken, drained and empty, both physically and emotionally. And in terms of that fertility setup I was given. Yeah, that turned into a really unhealthy expectation, especially being post-loss. We are now roughly a year out from miscarrying August and I have yet to get pregnant again. With Norah and Lora, I got pregnant in 1 to 2 months of casually trying so this is an entirely new experience for me. And to put it very lightly, I am not a fan.
Thank the Lord for my community of loss moms; they have been able to provide the most tangible and effective guidance, especially when it comes to how the miscarriage impacts my body because they've walked through it themselves.
For example, several loss moms directed me to try acupuncture, and I am forever grateful because acupuncture has had the single greatest impact on the way my body carries the weight of all of my experiences.
This, again, is why I am so passionate about sharing our stories. It's not just some fluffy idea; the sharing of experiences has helped me to survive, so I want to pay it forward.
Death can feel like the most significant part of your story. It's incorporated into who you are now, and maybe it's even redefined your idea of self. This version of you is different than it was, but it's still beautiful and it's still worthy.
I am a 31 year old graphic designer who puts hot sauce on everything. My favorite color is black and my soul belongs in the mountains. I hate mornings but that's when I'm the most productive. I bounce between 1 and 2 on the enneagram and I clean the house when I'm anxious. I started a podcast with coffee in the name yet I am the furthest thing from a coffee snob.
I also have two dead babies and a dead mom. I see our daughter, Norah, in foxes, yellow, and the number 13. I see August in butterflies and hearts. I see mom in everything, but especially in nature.
Your whole story matters, the easy parts, the funny parts, the mundane parts, they all make up who you are right now. And who you are right now is welcome at this table.
I want to end each episode with a little section called, 'What's in my cup? 'Just a fun quick chat about what's both literally in my mug, as well as what's filling my cup, like something I'm excited about or something that's giving me energy right now.
So as for what's in my cup – well I just tried golden milk for the first time and I am obsessed. It's a take on a traditional Indian drink that is a simple yet delicious creamy tea involving tumeric and other spices that have anti-inflammatory benefits. I'll link to two recipes in the show notes – one that is a traditional golden milk recipe and one that's modified because I did a combination of the two.
As for what's filling my cup: Melatonin gummies for Lora has been an absolute game changer. Lora has been a terrible sleeper her entire life, but lately we've been fumbling through this transition to a big girl bed, and the gummies have helped make that time less of a battle. So we've all been sleeping better the last few days. It's not a long term solution, but it's going to help us hang on to our sanity just enough as we transition our routines to try and support her sleep better. I’ll link to the ones that we're using in the show notes. But of course, don't give anything to your kid without consulting with your doctor.
I want to send you off with a quick note from an essay by Denise Pierre in the book, His Testimonies, My Heritage. Women of Color on the Word of God. In reference to Psalm 119 she states, “Whenever we get these moments, when we see the light of God break into the darkness of difficulty, sorrow and death, we are walking on holy ground.”
Thanks for joining me for this episode of Death + Revival + Coffee and for honoring me with your time. You can find links to all the resources I mentioned in the show notes and you can follow me on Instagram @death.revival.coffee
Let's chat again soon.