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.

Early Morning Daydreaming

“You know that place between sleep and awake, that place where you still remember dreaming? That’s where I’ll always love you. That’s where I’ll be waiting.” – Tinkerbell to Peter Pan, in Hook. 

In the early morning moments, in a sleepy place between dreaming and waking, I think of Jackson and our old lives. I see him, I feel him, I sense him. Some waking part of my brain says he’s not there, and the sleepy part just says “Shhhhhhh”, lulling me back into a warm, comfortable, nostalgic place.

I see him again, his face, those glimmering eyes with a thirst for life. That sweet, brown hair that always catches the sunlight. That perfect nose, those perfect lips, his perfect skin. He’s motioning and talking and playing and I’m watching him on a movie reel. Except it’s not any scene I’ve seen before, it’s something new, or a blend of a thousand memories at once.

I try to touch him, and the waking part of my brain moves in with a stern warning – if you move too quickly this will disappear. I back off slowly, like prey that has been spotted, and try to summon back the sleepy place. I imagine what plans we have for today. Backyard play date at Ada’s house? I’ll make sure to pack his green swim trunks and turtle sun shirt, and extra change of clothes. I’ll bring his doggie shirt that he loves to imitate and his cutest khaki shorts. Plus a couple of back up undies – the grey ones with navy stars, his favorite. And his toddler birkenstocks – the ones Ada loves to wear – they can negotiate trading shoes later. Ada’s mom will have sunscreen. We’ll just bring some snacks and the potty.

At some point the waking brain takes over and I "come to" the painful reality that is our lives. But it’s gradual, not sudden. I see it coming, the colors begin to fade and the vividness starts to wane. I would resist it, but by now I know it’s futile. It slowly disintegrates right before me, and clutching at the pieces only makes it worse. So, I let it go. Like parting with a loved one you won’t see again for a long time, I softy say goodbye and let him fall away.

 

 

A First Christmas

 

Our Garcia family tree this year, Jackson-sized and with pink lights in memory of Jackson. December 25, 2017.

 

For the last fourteen weeks I have been dreading Christmas day. Just hours after Jackson died, I remember realizing that Christmas was around the corner, and he wouldn’t be here for it. I remember the sensation of actual, stinging pain in my chest. Since then, I have been somewhat bracing myself for what we all expected to be a particularly excruciating day. 

Christmas day and the entire holiday season has been hard without Jackson. But the reality is that every day is hard without Jackson. Every day we wake up missing him, go through our days missing him, go to sleep missing him. Every day we also have “normal” moments and interactions – and every day we also get struck by waves of grief that crash hard. And Christmas day has been no exception. 

Looking around at the dinner table last night, I was struck with an overwhelming gratitude for my family. I think of all the people who wake up and go to bed each night missing their mom, dad, brother, sister, grandparent, friend, spouse. And, although each morning we wake up to the loss of Jackson, each morning we also wake up to the miracle of still having our parents, siblings, grandparents, friends, and each other (and Stella, of course). The only gift of mortality salience (awareness that death is possible and inevitable) is that we are so damn grateful every single day for those who did not die. We simply do not take life for granted any more. 

My heart goes out today to those of you who are missing your moms – especially a couple of women in my grad program who lost them too early. I am sending love to those missing their dads – especially a few of our college friends, a friend from my lab, and Adriana’s friend who lost hers a few weeks ago. Hugs to those missing their brothers – including another close lab friend and one of our Greenlake neighbors – and those missing their sisters – including my brother’s friend who lost his adolescent sister to SUDC several years ago. Hugs to those who lost their grandparents – like my and Adriana’s high school friends who recently lost their beloved Grammies. Another set of squeezes for those who have lost close friends, like a colleague of mine who has lost two of her best. Holding close those who have lost their spouses – like our close family friend who lost her partner to cancer and Sheryl Sandberg who lost her husband Dave and wrote a book that has changed our lives. I realize now, more than ever, how lucky I am to have all of the above relationships still present in my life, plus Bryan’s extended family and many wonderful friends. 

Finally, I stand together with the thousands of bereaved mothers and fathers out there missing their children and reminding us we are not alone. Specifically, I stand beside four courageous and loving mothers: Dana, Laura, Ashley, Tracy. I couldn’t face this without your deep understanding and incredible strength. Shep, Maria, Cricket, Whitney, and Jackson will never be forgotten. And although supporting me through our loss of Jackson will never be worth the incredible cost of losing your children, you have all deeply touched and changed my life. 

I don’t know if we will ever be “happy” again, but we will certainly be kinder, more grateful, people. Our culture is unfortunately fraught with insidious “feel-goodism” and an impossible quest for happiness – whatever that is. But that is no longer my goal for this life. We are committed to appreciating what we have, giving to others, and always honoring and remembering Jackson, knowing that joy and grief will be forever intertwined in our lives. Having a greater appreciation for life does not diminish our pain, and we certainly wish we could have both gratitude and Jackson – or if forced to choose one – just Jackson. But it’s not a choice. So we run with gratitude, appreciating each day that we and others wake up, arrive safely at their destination, and clear annual doctor’s visits. I am aware each day that the universe is indiscriminate with tragedy; bad things happen to good people all the time and the universe will not necessarily spare us in the future because we’ve made this enormous payment already. As Bryan often says, each day is a gift. Thank you to all who participated in Jackson’s Kindness Project this season, I can’t begin to tell you how touched and moved we are by all your contributions in Jackson’s memory (more on that here). 

Jackson, we wish you could be here with us today to see your tree, covered in pink lights with each ornament picked out specifically for you. Mama made cookies and I know you would have loved them and asked for more. And when I said no, you would have asked Abuela. Christmas songs keep entering my mind and I wish we could sing them together. We played salsa music last night and you would have loved dancing with Tita and riding the Boosted Board with Tio. You would have cracked up at Stella and Callie running around together with zoomies last night, and you probably would have told Callie “no kisses” by now. I wish you could read books with Dada, play house with Abuelo and Abuela, and sit on your Biso and Bisa’s laps. I wish you could have played with sticker books with your friends Daniel, Addie, Parker, and Levi a couple nights ago at Auntie Sara and Uncle David’s house. I wish we could snuggle and draw shapes together and wear matching pajamas. I wish you were here to open your presents. CC, Gpa, Uncle Chris, Uncle James, Jo Jo, and Jack are all together, remember our last Christmas in Camano and missing you, too. We had “foopie” (smoothie) for breakfast this morning and will be having Fred’s steak with rice and beans for dinner, your favorites. We will light your candle at the table so you can be with us, although my heart breaks this is how you “join” us at the table, now. It’s no “merry” Christmas, but we are grateful for you and the most precious gift that was your life and our memories together. We love you forever, my sweet boy. 

Fire Trucks

 
 

Like many toddlers, Jackson loved fire trucks. He loved seeing them roar by when we were out and about, fascinated with the lights and sirens. He’d point and say “fire truck! Wee-ooo-Wee-ooo” (in his sweet, excited toddler voice), watch it go by with intent fascination, and then look at me and say, “Again!”, to which I would always reply, “Fire truck had to go bye-bye but maybe we will see one later.” We would often hear them from our house when the windows were open and he would cup his hand around his ear, something we taught him to do to hear better. But of course he was ever so cutely unintentionally covering his ear instead.

Jackson had fire truck toys and shirts and books. He loved to drive his trucks around the house, imitating their sound. When he resisted getting dressed for school in the morning, I often employed the “choice of alternatives” strategy by saying “Do you want to wear your stripes shirt or your fire truck shirt?!?” Worked like a charm every time.

One of Jackson’s favorite books was “If My Love Were a Fire Truck”, a story about the powerful love between a father and his son. It’s the book Bryan read to him on the last night. Three weeks before Jackson died I walked in on him reading it to himself. The video (below) is beautiful snapshot of his lovely spirit, incredible comprehension, and adorable speech  (Drums go boom! Ride the horse! Ride/drive the truck! Lion goes rawr!). What I didn’t realize at the time is that the ending was a painful premonition of what was to come. As Jackson explains in the video, the story ends with a father hugging his baby goodnight, saying “I love you”, and then the fire truck goes “wee-ooo-wee-ooo” and “The End”. It’s a poignant yet eerily precise, moment-by-moment description of his last night and last morning with us.

This is what I wrote to Sergeant Tony Lucero, the incredible fire fighter who came to our aid that morning after the 911 call, in a thank you card a few weeks back:

“Thank you for your service on the most tragic and horrific morning of our lives. Although many details from that day feel muddled in my mind, I will never forget the respect and kindness you showed us that morning. You delivered the worst possible news to us on that lawn outside our house in the gentlest, most straightforward way possible. And you came back later to hold my hand and tell me, with watery eyes, how as a parent you were so truly sorry for our loss. Although I wish we never had to meet that morning, I am grateful it was you who responded to our call. Jackson loved fire trucks. Although your trucks and sirens carry a whole new meaning for me now, I’ll do my best to remember the way his face lit up when he would see one.”

During the chaotic blur of that morning, I just kept having the strange thought, “Where is Jackson to see this firetruck on his very own street?!”. In some parallel universe where he hadn’t died, I imagined us sitting at the window ledge together watching it, the lights, the sirens. But the tragic irony of it all is that it was there for him, because of him, as a result of his death and inability to ever see one or hear on again. I don’t know quite how to convey how immensely painful that fact felt in that moment.

I still try to remember his sweet excited face when I hear sirens but I will admit I just can’t. Sirens are a signal that something is wrong, someone is in danger.  And I hear them everywhere. I can’t quite figure out whether there really are more sirens, or whether I am just more sensitive to hearing them, but they feel like constant reminders (5-8 times a day) of how fragile life is and how commonly it’s threatened or taken away. I don’t think anyone’s misfortune can ever really be a source of joyful memory for me anymore.

I don’t know how to wrap this entry up in a positive way and I will resist the urge to try. I just miss my Jackson and his (our) love for fire trucks. And I am so grateful for all of the incredible firefighters out there who come to the rescue of people like us on the worst days of our lives.

 

Video from August 30, 2017, 4:11pm

 

Passage of Time

It’s been 11 weeks, 2 days since Jackson died. In some ways it feels like it was just yesterday. Although I expected many emotions to linger and ebb and flow (sadness, anger, guilt, fear), I did not expect shock to still be here. I feel shocked that shock can still permeate my days when Jackson is so clearly gone. The seasons have changed, our furniture has changed, we have changed. And yet I still have to metaphorically shake my body and tell myself that Jackson is gone and he’s not coming back. 

And still, in other ways, it feels like it’s been a lifetime. It’s been just short of three months but it feels like we’ve aged years.

I feel so ambivalent about the passage of time. I remember in the early days after Jackson died I just wanted more time behind me, more days to buffer and provide distance from the acute pain of that horrible, tragic day. I was desperately hoping that what people say about time and healing is true, that time heals, joy will come, pain will ease.  And at the same time, I’m finding that as the days and weeks keep passing, I feel the added pain of having more time since the last time I held and kissed my sweet Jackson. I can hardly bear the thought of being any farther out in time than we already are. I cringe to imagine a day where I say “My son died X years ago.” I fear that his lovey will lose his scent. I fear I’ll forget how his skin felt, or how it felt to tousle his hair. I fear that – even though we have pictures and videos – I’ll forget the smaller more ‘insignificant’ moments – a cuddle in bed, his signature expressions, or the way he shrugged his shoulders – that are now anything but insignificant. I feel the urge to hoard every single memory, capture it, frame it, enshrine it.

Although the pain is still very much still with us and always will be, the days have overall become less difficult as we’ve learned to live and cope with pain. But it’s exhausting. Every morning I brace myself for what the day will bring, and every night I take stock of the pain I’ve endured, pat myself on the back for getting through it, and wash, rinse, repeat. Each day is an immense effort. On hard days, the thought that I have to endure my own life for another 50 years (“if I’m lucky”) is a hard one. I keep waiting for some ethics committee to barge into my life and decree that this is cruel and unfair. But nobody shows up because this is just part of life - and it is for so many people. We are forced to march, willfully, with the passage of time.

I also know it won’t feel this way, this intensely, forever. Nor has it felt this way exactly for the last 11-ish weeks. I am back at work, go out with friends, crack jokes, and smile for photos. I sit across from Bryan and sometimes even think “We’ve done this before – when it was just the two of us. We can do this again.” But we will never be the same. A fellow SUDC mother shared this C.S. Lewis quote with me and it resonates deeply: “There are moments, most unexpectedly, when something inside me tries to assure me that I don’t really mind so much, not so very much, after all. I was happy before I ever met H. One is ashamed to listen to this voice but it seems for a little to be making a good case. Then comes a sudden jab of red-hot memory and all this ‘commonsense’ vanishes like an ant in the mouth of a furnace.”

We keep hurting but we keep marching. Always carrying the pain – sometimes visibly and other times invisibly – wherever we go, whatever we do. Healing won’t be about eliminating the pain, but rather learning how to keep participating in life and building up coping and new experiences to continue scaffolding our lives. The pain won’t end but it will change and shift and move and we need to accept it as our companion for the long haul. A reminder of a wonderful boy, his incredible joy, and our breathtaking love.