Jackson's Little Brother is On the Way

I didn’t think I could be brave enough to have another child after losing Jackson. The day he died I told myself “never again”; it was too risky to love that fiercely with the knowledge that it could all be taken away from you in a moment without warning, without fault, without explanation. Over time we realized that this had always been life’s contract, and that living without fierce love was not a life we wanted to live. We knew having another child would never be able to bring Jackson back, but it could bring back opportunities for that fierce love we were so desperately missing.

The words of Dr. Paul Kalanithi in “When Breath Becomes Air,” an incredibly honest and moving physician’s memoir on life and death from the perspective of both doctor and patient, resonated deeply with me as we contemplated the risks and benefits of trying again. He heartbreakingly describes battling stage IV metastatic lung cancer in his 30s and the painful decisions he is forced to make with his wife, Lucy, about whether to have a child. A friend asks him “Don’t you think saying goodbye to your child will make your death more painful?” He responds, “Wouldn’t it be great if it did?”. Lucy and Paul learn, in the most painful way, that “life wasn’t about avoiding suffering.”

We decided to go for it, but it wasn’t an easy road. After two early miscarriages, we learned that suffering one loss doesn’t preclude you from further loss. Each passing month took us farther away from the last time we held Jackson. And each passing month that I didn’t get (or stay) pregnant took us farther away from the first time we’d get to hold our new baby. It’s as if we were stuck in some warped universe where we were simultaneously falling away from both of our children at the same time.

It was tempting to feel victimized, like the universe was out to get us, but we know that the universe doesn’t keep score. We just kept rolling the dice. We’ve learned there is no such thing as “fairness” or “deserving” when it comes to loss. In fact, the expectation of fairness or the idea that we are “owed something” at times just made it all the more painful. But longing to be a parent, especially when we felt repeatedly blocked from being parents, did felt torturous.

And then it happened. That second pink line came and it stayed. It didn’t bring Jackson back, but it brought back some much needed hope. It also brought so much gratitude that I was able to pretty easily dismiss my 24/7 nausea, because we were getting another chance. Some expressed concern for this joy at such an early stage of pregnancy (especially given the prior miscarriages), and that’s when I realized I was fearless. Not devoid-of-fear, but rather freed-from-my- fear. Although there are traditional “in the clear” milestones with pregnancy, like hearing a heartbeat, making it through 1st trimester, and clearing genetic and ultrasound screening, I had the painful but freeing awareness that we are never fully in the clear. I knew mothers who had stillborn babies in their third trimester, and mothers who had lost their infants shortly after birth. And I knew my own story of losing a perfectly healthy and thriving toddler. The painful wisdom that comes with surviving this kind of loss is there is no clear – so enjoy what you get, for however long you get it. From the moment that second line turned pink, I pledged to love and appreciate this little life whether they stuck around for 2 days, 2 weeks, 2 months, or 2 years – and hopefully, much much longer than that.

Of course, in addition to joy, hope and gratitude, we have experienced grief and sadness, too. It’s very painful to know that Jackson won’t get to meet his baby brother. And although we intend to teach his baby brother all about Jackson, that falls painfully short from watching their relationship flourish and grow. These are the secondary losses that come with pregnancy after child loss; where there used to be singularly giddy excitement, there is now grief-tempered joy. Where there used to be happy tears, there are now happy-sad tears. Ultrasound visits, pregnancy reveals, and setting up the nursery are just going to be different this time around. We have learned that although we can experience genuine positive feelings, these emotions sit alongside, rather than eliminate, our sadness and longing for Jackson. In fact, finding out three days ago we were having a boy brought tidal waves of emotion. But in spite of all of this complicated joy, I experience the very strong and genuine comfort in getting to mother a son again. Best job I ever had, and I can’t wait to have it again.

So here we are, 13 weeks into a new chapter of our parenthood. January can’t come soon enough! I don’t know how I’ll put our new baby to sleep, or how I’ll sleep while they are sleeping, but I trust we will figure this out, as we have learned to cope with so many unthinkable challenges already. Can’t wait to meet you, Jackson’s brother. ❤️ 

 

Natalia’s Interviews with Dr. Charlie Swenson

I had the great privilege of being invited to speak on Dr. Charlie Swenson's podcast, called "To Hell and Back". Dr. Swenson is a psychiatrist in Northampton, MA, and a renowned expert and trainer in DBT (Dialectical Behavior Therapy). In my graduate school program at UW, I have also come to specialize in DBT, as well as exposure-based therapies for Posttraumatic Stress Disorder (PTSD). One of my supervisors, Dr. Melanie Harned, learned that I was interested in sharing our story from the perspective of a DBT and trauma therapist, and introduced us.

"To Hell and Back" is a very approachable podcast series focused on how people cope with "hellish" life experiences, drawing from DBT and other forms of treatments. I was invited to talk specifically about how we've coped with our loss of Jackson. 

In the first episode, I share our story and we talk specifically about the natural recovery process, the power of acceptance, and permission to function after trauma and loss. 

In the second episode, we discuss "avoiding avoidance" and the importance of social support and how to elicit and shape that support in one's community. 

In the third episode, we discuss the changes to relationships and to the "self" after trauma, making meaning after trauma and loss, our "Kindness Project" in memory of Jackson, and the ways in which Jackson's presence and impact continue to live on. 

The links to the podcast are available below. Thanks to Charlie and Melanie for the opportunity, and thanks to everyone who listened in! I felt Jackson right by my side the whole time during this precious, shared mama-son project. Although I wish he never had to die for me to learn and share these things, I am grateful for the opportunity to not let our suffering go to waste. `

Surviving the Death of a Child (Episode 1 of 3)

Surviving the Death of a Child (Episode 2 of 3)

Surviving the Death of a Child (Episode 3 of 3)

Functioning and Grieving

About a month after Jackson died, I talked to a mother who several years ago delivered a full term stillborn baby. She was a friend-of-a-friend, someone I’d heard about but never met before. Yet she he was the only person who I felt could remotely “get it”, the only person I could imagine talking to who wouldn’t say “I can’t imagine.”

We talked for over an hour. Perfect strangers and yet completely bonded over the most horrific thing I could ever expect to share in common with someone. Our stories were different in some ways, but fundamentally the same. We were both high-achieving planners who had carefully crafted our lives – career, husband, family – and were living in our prime when it all came crashing down in an instant. Both of us lost our children suddenly and unexpectedly, through no fault of our own, and for no identifiable reason.

Furthermore, we had both blamed ourselves in the absence of an explanation. We had both wished we’d done things differently, even though we traced and retraced each step (and walked backwards and traced it again) and knew we had done things “right”; she did her kick counts and I put my sub-fever child to sleep in a safe room after a bit of dinner and ibuprofen. Both of us would have been crazy to show up to an ER, and yet we both wish we had. Both of us felt angry at other parents who weren’t as careful and yet still had growing, thriving children. We had thought ourselves “untouchable”, only to find ourselves slapped in the face by the worst tragedy. This perfect stranger knew the most intimate details of my experience – not from hearing my story, but because it was also her story.

A lot of this phone call resonated at the time, but even more of it resonates now. One thing she said has particularly made increasing sense to me over this year: “I wouldn’t say I’m a ‘happy’ person. I wonder if others can see how deeply I’ve changed. I’m sure to most people I appear to be high-functioning and back to my normal self.”

Ask anyone in my life – family, friends, students, clients – and they will probably tell you I am pretty high-functioning. I went back to teaching two weeks after Jackson died, back to my research one month after that, and back to clinical work one more month after that. And it’s all going well – very well, actually. I took it easy at first, balancing self-care with a need for scheduled activities and participating in meaningful work. After three months of meal train we are not only back to cooking but are hosting gatherings in our home. We shower and get dressed every day, are productive at work, feed ourselves, keep a clean house, take care of Stella, and even keep up with things like timely birthday cards. By any measure, we are functioning more than well.

But I wouldn’t say I am a happy person. And I would not say that I’m back to my normal self.

What is hard to see, and what is not captured on my social media accounts, is the silent and invisible struggle we face each day, many times a day. The slow and steady drip of grief is always in the background of every smile, every functional act. In addition to smiling regularly we also cry regularly. I wake up each morning to an indescribable flatness. I walk about my day without that skip in my step. I park the car when I get home and just sit there for a moment, gathering the strength to get up and get out. I lie in bed each night feeling hungry for something that I simply cannot find. I hunger for Jackson.

Although I am immensely grateful for my ability to function so well (and the crucial social support that has allowed this), I also know that it sends an overly simplified message to the outside world: “She’s doing fine”. But it’s the in-between moments that continue to gut me; all the stuff that happens between the feel-good gardening, fundraising, internship matching, tattoos, traveling, and kindness acts. My Instagram feed reads: “Look how well she is coping with her loss and doing meaningful things to honor Jackson.” Although this isn’t false, it also leaves out the chronic aching in my heart and the dozens and dozens of daily stings.

A couple years ago, long before this phone call, long before losing Jackson, I remember learning that this very same mom who lost her stillborn baby gave birth to a new child. I remember thinking “Thank goodness! She finally got her baby.” I felt uncomplicated joy and relief for this friend-of-a friend. What I now know and understand is that nothing can erase the tragedy of losing that child, not even the joy of this child. And what I wonder if others understand is the degree of my brokenness and emptiness even though I can smile and laugh and function and live. No superglue will ever be able to cleanly mend what has been so permanently shattered. We continue to pick up the pieces and glue ourselves together, but even the most careful repair job shows the lines of trauma and loss. To an observer these lines are subtle and easy to miss, especially from afar. Even those who care to look closely may see the lines but fail to grasp their significance. Looking back at my ability to empathize with child loss before-and-after losing Jackson, I remain convinced that the frequency and intensity of this pain is impossible to describe and equally impossible to understand secondhand. I accept the solitude that this brings.

Although “I can’t imagines” generate pangs of solitude, they also convey respect for an unrelatable experience. And just as it’s hard to understand the depth of the loss, it’s hard to understand the complexity of the recovery. Just as I accidentally projected my own relief onto my friend-of-a-friend, I know that others project their relief onto me. People who love us are always thirsty for positive signs and seem quick and eager to drop us in the “doing ok” bucket. This is understandable but also unintentionally dichotomizes our recovery. We’re not doing poorly, and we’re not doing great; we’re just “doing” – moving forward and through our lives, and thankfully not stuck. But also forever changed in every way.

As W.S. Merwin puts it, “[His] absence has gone through me like thread through a needle. Everything I do is stitched with its color.” Highly functioning and deeply hurting. All of the time. All at the same time. 

Secondary Losses

As if losing Jackson wasn’t painful enough, we have also experienced many secondary losses – those other things you lose along with the primary loss of a loved one. Some are immediately apparent, others become apparent over time, and others I have yet to fully grasp or understand. 

My very first secondary loss was my loss of breastfeeding. For two years, my mornings began the exact same way: the sound of Jackson stirring awake, sometimes crying, sometimes chatting, sometimes “Dada! Mama! Jackson wanna get-a out!”, followed by Bryan swooping him from his crib and plopping him into our bed for a morning cuddle and breastfeeding. We’d lay there, “all four of us” as I’d often say, tired but in utter contentment. Everyone, including Stella, under the covers safe and sound with nowhere to be except wrapped up together. We knew, even then, how special and fleeting this precious time was bound to be. Someday soon this two-year-old would opt for “milk in a cup” and mushy morning snuggles would turn into morning struggles to get him out of bed and off to school. The loss of breastfeeding, once gradual and distant in my mind, came to an abrupt stop in the worst, most awful way. I had read so much about weaning process; then BOOM, it was me that was immediately weaned. Suddenly, permanently, overnight. 

Tangible secondary losses – like his toys – were also painful. I’ll never forget the day we returned to our house and saw his toys strewn around, as if they were waiting for him to come back. His beloved kitchen and the fruits and veggies he loved to “chop”, and the mugs he loved to make “tea” in, were scattered about. The realization that he’d never play with them again knocked the wind out of me. Almost worse – I knew they were headed to the shed for storage, maybe I’d never see them again. Same with his multi colored toy-bin, trike, pink vacuum, and Melissa & Doug broom set. Saying goodbye to his cars (the wind-up ones that made him erupt into giggles), his shape-sorter blocks (and the pride on his face when he got it right), his pop-up animals (the ones he’d name and then kiss all in a row), his toddler cell phone (which he’d often use to call up his best friend, Cohen), and his IKEA pop up tent (where we’d play hide-and-seek, or where he’d go to read a book), was more heartbreaking than I’ll ever be able to describe. 

We also said very reluctant goodbyes to bedtime routines and stories with Jackson. Goodbye to the face Jackson would make when Mama Llama was running through the house, the way he imitated the zoo animal sounds in “Dear Zoo”, his own sweet rendition of “Firetrucks”, the way he chimed in with Blub, Blub Blub in “The Pout Pout Fish”, his excitement in spotting the matching balls in “Snuggle Puppy”, his attempt to sing along with “Barnyard Dance”, the way he grabbed his feet in “Ten Tiny Toes”, and his sweet concern for the baby doggie in “Daddies are Awesome”. It was so painful, in fact, that for a few days after losing Jackson, Bryan would go to a chair and read these books at Jackson’s bedtime. We said goodbye to Daniel Tiger, Mr. Rogers, Casper BabyPants, and all of our favorite songs. Goodbye to the Zoomaseum, the Children’s Museum, and the Aquarium. These were some of our very favorite activities; these were not things we were prepared to lose. 

Beyond the tangibles of routines, toys, and books, over time we started to take-in the secondary losses of future life experiences and opportunities. Although we take comfort in the incredible number of trips, adventures, and experiences Jackson cherished during his short life, there are of course many things that we lost. Among the most painful was the loss of Jackson’s big brotherhood. Jackson adored babies. Every morning on my way to drop Jackson off in the Toddler 1 classroom, we’d stop at the window of Infant 1 to wave hello to the babies. I’ll never forget the way he looked at babies, as if they were so much younger than him, or the way he’d say “Baby is sooooo cuuuuttte” to his baby doll. I couldn’t wait to give him a little sibling and I am certain he would have been such a wonderful, loving older brother. What I would give to see him enact a mental image I hold so clearly and dearly in my mind: Jackson as a four-year-old boy holding his baby brother or sister wrapped in a hospital blanket, kissing their forehead softly, looking at them with sweet interest and adoration. It’s both lovely and heartbreaking how clearly I can see this when I close my eyes. 

Another experience I mourn the loss of is graduating with my Ph.D. without that photo – you know, the one with cap and gown, diploma in one hand and kiddo in the other. That “we did it!” moment I was so eager to share with him next year, and then reminisce about years down the road when I told him about my adventures as a graduate student mama and so many lessons I learned along the way. It was also in the plans to take him to Disneyland, a very special place for my family, next summer. I don’t know how many times my Dad has asked me “When are we taking Jackson to Disney?!” and my response was always “Soon! Once I get this Ph.D. and he’s old enough to remember it!” Summer 2019 was going to be the perfect time – just after my Mom’s 60th birthday and my graduation, and just before Jackson’s 4th birthday and the next baby. The perfect plan — how on earth could it go awry? Forevermore, these “hallmark card events” (graduations, birthdays, new babies) will carry a sting of grief. That pure version of joy is gone, replaced now with reminders of incomplete photos, an absent place setting, a missing brother. 

Witnessing Jackson’s friends grow up is both joyful and painful at once (I call these things “painful joys”). Joyful, because of how much we love our PEPS and daycare families and cherish their memories of Jackson – and because losing them would be another unbearable secondary loss. Painful, because watching Jackson’s friends learn to run, ski, ride bikes, write letters, and ask sophisticated questions makes us miss our son – not necessarily the Jackson we lost, but the Jackson we couldn’t wait to meet. And I have a feeling that this only gets harder with time. Imagining Jackson as a 2 ½ year old is hard enough; it will become harder and harder to imagine him as a Kindergartener, a middle-schooler, or a grown man. What would he like? What sports/music/games would he play? Who would his friends be? Who would he fall in love with? 

A sometimes confusing, but evolving, secondary loss has been my identity. Five months ago, I could have told you exactly who I was: I was Jackson’s mama, and with that came my identities as potty trainer, snack packer, sleep trainer, bath giver, comfort provider. Am I still a mama? This is a complicated question for me. I know I will always be Jackson’s mama, but the reality is that being the mama of a dead child is nothing like being a mama of a living child. Other parts of my identity have remained: I am still Bryan’s wife, daughter and sister to my parents and siblings, loyal friend, budding psychologist, liberal feminist, Boston Terrier enthusiast, scrapbook maker. Although many of these things remain true, I can say with absolute certainty and confidence that I am no longer the person I used to be. And that’s not necessarily a bad thing (though, I’d be lying if I said I wouldn’t turn back into my old self, in a heartbeat, if I could). Although the “new” me is wiser and stronger, losing Jackson was a far too steep of a price to pay. Along with my loss of confidence in the safety of this world and my ability to control my own fate, I have gained confidence in my ability to survive whatever comes my way, even the eventual, inevitable death of others and my own. I am more humble in the face of nature, more mindful in my day-to-day, less of a planner, less anxious about trivial things, and more intentional about meaningful work and relationships. This is not just a cheesy new “Carpe Diem” mentality; it’s an utter and profound respect for time and life, in all of its fragility and preciousness. 

Secondary losses will continue to show up in our lives, in big ways and small ways, and even in some unexpected ways I still can’t foresee. I was cutting an onion in the kitchen the other day and had the thought, “Damn it! Jackson will never get to learn how to cut an onion!” And I started to cry – part grief, part onion. But these are the small moments that get you, mourning the seemingly trivial day-to-day lost experiences. Although Jackson loved “chopping” wooden vegetables in his kitchen, I reminded myself that cutting a real-life onion is far less enjoyable. Maybe he was spared that pain. But even painful life experiences, like a scraped knee, losing a game, college applications, and romantic breakups, are things I wish he hadn’t been spared from. These, too, are secondary losses. 

Although our losses are plentiful, we keep in mind what we still have, and what we’ve even gained. And with some of these losses, we make intentional choices to “take them back”. This concept, introduced to us by Sheryl Sandberg in Option B, is about intentionally choosing and allowing joy back into your life. We now occasionally sit in Jackson’s room and read his books. We now invite his friends, and their parents, over to our house to play. I’ll still graduate and say “We did it!” and we still plan to make Jackson a big brother. And someday we will go to Disneyland, and enjoy it for him. It’s not the same, and never will be the same, but we choose these joys, for us, for Jackson. The only thing more devastating than losing Jackson would be that his legacy became our suffering. We plan to live our lives, continue our family, and always hold space for grief and love, painful joy and plain joy. All for you, bubbo.

 

August 20, 2017. Jackson says goodnight to his baby.

August 20, 2017. Natalia fails to coax Jackson into saying “baby is so cute” for the camera, and it goes sideways.

 

“No Parent Should Have To Bury Their Child”

“No parent should have to bury their child” 

I heard this a lot after we lost Jackson. We bury our grandparents, then our parents, and then our children bury us. It’s the natural order of things. People say it to validate our shock and comfort our pain, and because they have probably never heard of it happening before — and because they can’t bear to imagine it happening to themselves.

The reality is that children die all the time. Before modern medicine, this was actually quite common; my own great-grandmothers buried quite a few of their children. Fortunately, this has changed over the years with the advent of antibiotics, medical technology and improvements in prenatal care. It’s no longer common, but it is natural. Children continue to die from all kinds of things: accidents, illnesses, natural disasters, and other times suddenly for no apparent reason at all. But even then, in cases like Jackson’s, there was always a reason. And much of my sanity hinges on this very fact: that just because we don’t know the reason doesn’t mean there wasn’t a reason. Jackson died because something natural caused him to die. This matters to me.

The main shock to our system is facing the reality that we cannot always protect our children. Bryan and I are proof that you can do everything right (well, most things) and still the center of your universe can evaporate in an instant. And this reality, that despite our best intentions and precautions, our children can still die, is the most terrifying but natural thing of all.

I’ve said to some people that I felt like I died on September 20th along with Jackson. It felt like my hopes and dreams for our family and our future disappeared the moment we found him unresponsive in his crib. But over time I have come to realize that I didn’t die that day, I woke up. I became awake to the fragility and preciousness of life and the incredible illusion of control we carry in planning our futures. I have never been so acutely aware of my “smallness”, or my immense insignificance in this universe. I have never been so cognizant that even the best made plans don’t always pan out. I came to understand just how foolish we are, in this modern society, with our perceptions of invincibility. In the last few months, in my own personal circles, a hurricane decimated Puerto Rico, wild fires obliterated California, a mudslide in Montecito claimed the life and home of my best friend’s stepmother, and dozens of families lost their toddlers to SUDC. Not to mention the thousands of families outside of my immediate circles who have lost loved ones and children for all kinds of reasons. My point is that death, even when it’s sudden and unexpected, or “too early”, is not unnatural. Uncommon? Yes. Painful? Absolutely, like hell. But perhaps not unnatural.

I wish, with all my might, that Jackson was still here, that whatever took him could have spared him instead. But that’s like wishing that an egg dropped from a skyscraper didn’t have to break. Whatever took him followed the laws of nature, chemistry, physics. It was both unavoidable and irreversible once things were set in motion.

Bleak as this all sounds, these tragedies have woken me up to the moment (to be clear - I would trade back this “wisdom” in a heartbeat). There is simply no time to waste in living. Bryan and I just booked a trip to Europe to visit family and friends, our siblings have re-evaluated their jobs and career paths, and our parents are considering retirement earlier than planned. This is not a coincidence; this is a shared epiphany about the short, unpredictable nature of life. What a mistake it would be to take our precious lives for granted. What a tragedy it would be for us to assume we have an entire life ahead of us, to live things up later.

We certainly can, and should, take precautions and work towards finding answers, prevention, and cures. I am all in favor of advancing health care research and working to eliminate unnecessary deaths by gun violence, domestic abuse, and drunk driving. But there is no sure-fire way to completely safeguard against "premature" death. And nor would it be living to do so, if we could. All we can do is advocate as best as we can for our children and live humbly in the face of our natural mortality. In the words of Mary Oliver, “Tell me, what is it you plan to do with your one wild and precious life?” 

 

A Note to My Mama Friends

It’s ok to find parenthood challenging. It’s ok to post your public displays of affection with your children on Instagram. And it’s ok to have confusing, mixed feelings about the simultaneous joy and difficulty entailed in raising a child. Especially when I have lost mine.

I sense your unease when you tell me about your long days and the sleepless nights. Every complaint is milder now, and often followed by a statement of gratitude for what you have. I so appreciate your caution with my feelings. I know my pain has touched you and I am glad you see how lucky you are.

At the same time, I want you to know that your frustrations are valid, because it’s true that parenting is hard. It’s also true that you are grateful for your children and wish I didn’t have to lose my child. Both are true without negating the other.

This is uncharted territory, at least for me. But I invite you to keep inviting me into your life, and together we will figure out what works. Know that I love you and your children and coming over to your house for dinner will likely be both hard and enjoyable. Know that watching them play with toys and laugh and grow will make me both smile and long for Jackson. Know that the joy in remaining connected to your family is worth whatever difficulty we may experience in being around you. My ability to cope with this tragedy involves and requires feeling close to you, my mama friend. And ever since you became a mama, it became impossible to share “yourself” without your child.

I love you and am grateful for your willingness to navigate this painful obstacle, one we never expected to impede our friendship, along with me. Know that sometimes you may accidentally cause my heart to sting. Know that sometimes my ability to be your best support may fall short of what you need. Please know you have my permission to share and post and call. And I’m giving myself permission to occasionally unfollow, not hit “like”, or let your call go to voicemail, if that’s what I need in that moment. Tell me about your children, and also know that I may choose to skip their birthday party. I’ll know you understand. Please know, above all else, that I am willing to try and risk taking some missteps here or there, if you are.

 

Carrying Him With Us

They say you always carry loved ones in your heart. But sometimes it’s just not enough. In fact, all the time it’s never enough.

A few days ago, I got my first tattoo. A clean, simple, curved line in the shape of a “J” culminating in a heart, all in the shape of an eternity symbol. I knew I wanted it on my wrist, but hadn’t decided left or right. I ended up choosing my right, so that I could carry Jackson with me in everything I do: eating, writing, dressing, driving, bathing, shaking hands, cooking food. I wanted him front and center, visible through every step of my day, and exposed to the world.

But mostly, I just needed easy, tangible proof of his existence. Sometimes, in this strange new life, I begin to wonder if he was ever even here, as if maybe it was all a dream. It’s a disturbing moment when the surrealness of his death is replaced with a surrealness of his life. It’s in these moments, when this strange new life starts to feel a little bit too normal, that I must remind myself that only four months ago there was a little boy named Jackson who lived in that room. That room with the closed door that used to be open.

My tattoo comforts me by providing physical proof that he was really here. It’s a permanent, visible modification to my body, much like my beloved stretch marks from pregnancy, and the shape of my breasts after two years of breastfeeding. Who knew that standing naked in front of a mirror would become a sacred moment of reflection in my daily ritual. A moment to pause and honor his footprint. An occasion to take in the physical testaments of Jackson’s presence here on earth.

We all find our ways of carrying Jackson with us. Some of us have chosen tattoos and jewelry. Others carry his photo on a keychain, tucked in a wallet, or saved on their lock screen. And many continue to wear his pink memorial bracelet. I am comforted by mental images of my future self: nursing our next baby as they play with my Jackson necklace, giving them their own pink Jackson bracelet to wear to school, attaching a locket with Jackson’s photo to his sister’s bridal bouquet, customizing cufflinks for his brother’s wedding day, and imagining myself as a wrinkly old woman still kissing my wrinkly Jackson tattoo goodnight.

Whatever we choose, it gives us comfort to know we can continue taking some part of him with us on this journey of life. He was always here. And we will always carry him with us wherever we go.

A Disconnect

This won’t happen again – yet I am terrified it will. 

As many of you know, SUDC, by definition, remains largely unexplained. We don’t have much information at all to understand what happened to Jackson. However, we have been given one piece of data that is reassuring: of the over 800 families in the SUDC registry, this has never happened more than once to any family. And almost every family either already had living children, or went on to have more children. 

I will admit, the moment I heard this I just wept tears of relief. I had combed over Google and PubMed countless times trying to search for this statistic, to no avail. And as a researcher, a “data person”, I desperately needed to understand our odds for this happening again. We have the SUDC foundation to thank for so meticulously obtaining, tracking, and documenting pretty much the only information available about SUDC. 

Although this statistic was initially reassuring, over time the relief has faded. The problem is that once you’ve been statistic (SUDC happens to 1 in 100,000 children), statistics begin to lose their reassuring power. I remember when I was pregnant we were told about certain odds for things like miscarriage, Down’s Syndrome, Trisomy 11 etc. I barely blinked because the odds for these things were so low – it couldn’t possibly happen to us.

And then it did.  

It’s a strange thing to both intellectually understand the virtual impossibility of this happening again and also feel in my bones that this will surely happen again. Because even though this is only 1 in 100,000, it also happened to 100% of our children. And I find this “dissonance” – the discrepancy between what we know (facts) and what we feel (fear) – interesting, in part because it’s actually something that I study. 


My own research is dedicated to understanding fear responses. Our lab studies often involve teaching participants to fear certain things by pairing them with something aversive, like a shock. We then remove the shock contingency, teaching participants that these things are no longer threatening. Most people will learn this easily; they are readily able to both acquire and extinguish fear. 

However, this all depends on how fear is measured. These studies often collect various measures of fear and a widely documented phenomenon is that these various measures of fear don’t always converge. In fact, many studies find that although people can easily extinguish self-reported fear, their bodies continue to physiologically respond to these stimuli as if they are still threatening. In other words, many people report being cognitively unafraid while simultaneously showing signs of physiological fear -- like sweating, increased heart rate, rushes of cortisol. They know it’s not dangerous, yet their bodies feel scared. My mentor has a great example to illustrate this: It’s like standing on the at the top of Chicago’s Skydeck, a 103 story-tall observation deck with three layers of glass floor. You know you’re safe, but try convincing yourself in your body.  

The good news is that our field knows exactly how to treat irrational fears; it’s all about exposure. The same way that you can’t cognitively talk someone out of a fear of spiders, nobody will ever be able to talk me out of my fear of this happening again. Much like the spider phobic needs to behaviorally hold a spider and learn that it’s not dangerous, I need to hold my next baby and learn that they wake up. The problem is that SUDC can strike at any age, and even if our next child wakes up 6,570 nights and makes it to their 18th birthday, something tells me I won’t exactly be “resting” then, either. The reality is that opening ourselves up to loving another child again also involves opening ourselves up to fear and the possibility of illness and pain and tragedy, of all kinds, for as long as our children live -- which we hope next time is a long, long time. 

I don’t know when or if I’ll ever shed this “baseless” fear, but I do know that we won’t let it stop us from trying again. My good friend Emily has reminded me that lightning doesn’t strike twice in the same place. We are going to have to live through several lightning storms before this can feel true. And we can’t avoid lightning storms if we want to live through them.

“I am not a parent” by Adriana

I am not a parent.
I did not build your bones in my belly like your mother
I did not lay you to sleep with a kiss each night like your father
I did not see the way your eyes,
your nose,
your feet,
or your sweet soft smile resembled my own.
You were not mine.
So why, when my eyes open each day,
do I feel like an entire part of me has vanished?
So why do I feel like when your heart stopped beating,
mine did too?
You were not mine.
Yet if the day comes for me to have my own,
I will think of you and my heart will break again
because although I did not create you,
you will always be the first who filled my heart and showed me
how the love of a child can swallow you whole.
Because although I did not create you,
I saw the way you would mimic my laugh
I saw the way you would repeat my words
I saw the way you would copy my rhythm.
I am not a parent,
but I am your Tita,
and you will always be the part of me that I have lost
the part of me that I strive to get back
the part of me that pushes me forward
to find love and light in the midst of the darkness.
I am not a parent,
but you will always be
my sweet Jackson boy.

 

Goodbye, 2017. I'll miss you.

 

Family pizza night. Photo: September 3, 2017.

 

Many assumed we would be eager to move into a new year, one where Jackson didn’t die. A new year with the promise of more “time”, that thing they say heals and brings opportunity for new joy.

What they don’t realize is that this also involves inhabiting a year in which Jackson never lived. The first nine months of 2017 were the happiest of our lives, period. And with each passing day, there is a growing pain as he fades into the distance.

Last night, despite my efforts to convince myself that tomorrow was just another day, that January was just another month, we sensed the looming presence of a new year approaching, far too quickly, as the clock made its way to midnight. It felt urgent and unstoppable. I felt a frantic urge to find a way to bring Jackson with us, secretly pack him in my suitcase, as we entered the portal of 2018.

Acceptance was the only antidote to this suffering. We accepted, hard, that we were not allowed to bring Jackson with us into the new year. We accepted, hard, that Jackson would forever belong to a year we were forced to leave. We accepted, hard, that despite our rebellious attempt to be asleep before midnight we would wake up in a new year, without our son. Hardest of all, we accepted that embracing the little wooden box between us was the closest we’d ever get to family cuddle time with Jackson again.

Like the calm after the storm, there is a peacefulness in having finally arrived here. The anticipation and frantic attempt to hold on to 2017 is over. And here we are. Just as we were as that morning when I kept screaming “No, no, no, I can’t!” and a voice in my head rebutted: “but you are”

A common experience among the bereaved is a fear that the world will move on without your loved one. I remember looking out the window the morning after Jackson died and feeling angry at the birds. How on earth could they be carrying on - don’t they know what’s happened?! But birds kept flying, people went to work, bakeries opened each morning, restaurants bustled each night, fall turned to winter, and toddlers moved up to preschool. It felt so strange and unfeeling, at times downright disrespectful, that the universe didn’t so much as pause for a moment to take stock of what it lost. 

And at the same time, it’s also a miracle that life goes on. If I had the power to pause time, or even pause my own life, I don’t know that I would have ever hit “resume” with either. For better or worse (mostly for better, these days), we just keep breathing and living, in a way I never would have expected to be possible. And turning the page on 2017 has been no different, so thank goodness it’s not a matter of choice. As I’ve said before, we continue to march, sometimes willingly but often willfully, with time on this treadmill of grief.

I also know that, even when life goes on, we are not alone in missing and remembering Jackson. Today some of you texted me a picture of a sunset, a lit candle, pink socks, his picture on a mantel, a song, or just a sweet note of remembering Jackson. A dear mama friend stopped by tonight to drop off banana bread and flowers, wrapped in pink bows, just to share love and tears, reminding us how much he is missed and how much we are not alone. Even the birds, once the source of my rage, have become sweet, peaceful reminders of Jackson. We now have a couple of very special bird feeders outside my favorite window. 

It’s no “happy” new year, we aren’t up for fireworks, and you won’t find us with champagne in hand or see our #bestnine on Instagram. In lieu of excitement for what’s to come, we bring acceptance that it’s coming. We don’t know what 2018 will bring, but we will be bringing a hope for better days and a fervent dedication to continue remembering and honoring Jackson as best as we can. We can’t bring Jackson through the portal, but we will bring our memories, our grief and love, and his kindness that continues to touch the lives of so many. 

Jackson couldn’t be here to ring in the new year, but he loved to cheers, so we'll let him raise a few glasses below. Cheers, Jackson. We love you.