Clinging Tightly to My Love and Memories

This morning, I woke up crying. I do every December 8th. Usually, it’s after a vivid dream of getting somewhere a moment too late or the inability to grasp something just out of reach. Last night I had a new version of a recent dream that Baby Girl was falling and her friend caught her. In last night’s dream, I was supposed to catch her and couldn’t get to her (fortunately for dream Baby Girl, her friend caught her again!) You don’t have to be a Freudian to interpret these dreams, but while my dreams may argue, I actually find so much peace and love in my sadness.  

To be clear, I wish I hadn’t had to find the beauty in my grief. I miss the version of myself that I once was. That « before » me felt lighter, freer, expectant. Decisions and simple tasks didn’t feel hard or disproportionately weighty. I was naïve in so many ways, with boundless hope and unfettered joy. It didn’t occur to me to not  put things off until tomorrow, because time was predictable and plentiful. Not that there weren’t hard times, disappointments and losses, only that I possessed the optimistic confidence that good always wins in the end. The shift isn’t one I think about often, but I do recognize it’s presence. It seems like boundaries and limits just appeared where once there were none—or maybe I finally saw the perimeters that were always there. 

While these boundaries are limiting, I think there are some really amazing things that come from them. Often people who experience great loss live life with an eye on the fleetingness of it-they find an urgency to love more, celebrate bigger, try harder, show more compassion, forgive quicker, and linger a little longer. They also are more likely to limit time spent with people who drain them, are more selective with who they let into their circle, and deny access to those who chip away at their hard-faught joy. 

So today, as I remember and cling tightly to all my love, I rest in the hope that we all can learn to live our lives a bit more urgently—because we simply do not know what time remains.

Love Will Find A Way

It's the time of year when my grief bubbles to the surface. As always, I am caught off guard by just how viscerally it strikes. I feel it in my heart and body before I'm cognizant of the emptiness in my arms and the longing in my soul. Some years are harder than others, but this year has been different, not harder necessarily, but deeper, longer and more intentional. 

I’m walking alongside my dear friend as she grieves the loss of her incredible son. It is such an honor when someone trusts you with their grief, allowing you to hold their person in your heart while you hold them in your arms. It is intimate and messy and beautiful and hard and big, overflowing with every emotion.

One of the most beautiful parts of sharing her journey is revisiting and honoring my own early grief. Experiencing loss from this perspective has helped me remember and revisit things from the first year after Hart died. I was so numb, terrified, heartbroken and desperately trying to keep from succumbing to the herculean strength of my grief, that much of the year remains just out of reach, blurry shadows of memories. But, although many details are fuzzy, the feeling of being cloaked in so much love-unimaginable, active love, grace, support and innumerable acts of kindness and thoughtful gestures-is etched in my soul. 

I have loved thinking about the incredible people who showed up and climbed into the trenches with me, holding my hand, holding my heart, and holding me up. These loves let me ugly cry, uncontrollably laugh and then cry again. They allowed me sleep, or try, and stayed up with me when I couldn’t even close my eyes, they listened when I needed to talk and sat with me in silence when I couldn't-all in love and without judgement or (obvious) discomfort, these amazing friends walked with me as I found my way through another day. And there simply aren't words to define this kind of love.

How brave and loving it is to stand beside someone who has experienced what is arguably every parent's greatest fear. People are seldom taught how to talk about such an unimaginable loss, let alone, how to support someone who has experienced it. It is scary, confusing and difficult to navigate, and trying to anticipate what someone needs is an exercise in futility, but the truth is, it feels that way for the person grieving too, and the best, most love-rooted thing you can do is show up and keep showing up as they travel this mapless journey. 

Grief is tricky. It's full and empty. It's timed and timeless. It's joy and pain. It's fear and bravery. It's awesome and awful. It's fluid and unyielding. It shreds your heart to pieces and causes it to grow ten-fold. It's everything and nothing. 

Grief is an ever-moving target and it is hard and raw and lonely-so, so lonely and every bit as terrible as you can imagine-more, actually. I've discovered you never miss your child less and that you can cry just as hard 19 years after they die as you did 19 days after. But sometimes, just knowing someone is there beside you is the only thing that gets you through until you find your footing again. 

Changing Seasons of Grief

This time of year is always hard for me. It’s the season of a complicated dance between beautiful grief and difficult memories. The past couple of weeks in Virginia have felt like a typical autumn in Indiana and it has stirred visceral memories and acute longing. Some years are harder than others, but I can't remember a year that felt so like the year Hart was born and died. It feels strange and familiar-a sort of déjà vu, making the discombobulation of grief time even more disorienting. 

I am so grateful for the privilege of loving and missing my sweet Hart, but longing for something that will never be, that, suddenly, weirdly, feels so near I swear I see a shadow, is tough. 

My 2023 New Year's resolution was to go out more often, spend more time with my friends and make those relationships a priority. Staying cozy at home, in my pjs, is my default, so I had to be resolute in my goals. And I am so much better for it. 

As I enter my grief season I know I will struggle to against my inclination to isolate and get lost in my grief. I know my tendency to decline invitations, to go inward, and to walk alone with this beautiful ache is strong, but I know my people's ability to reach in and pull me out when I start to withdraw is stronger.

This year has taught me that, while the pain doesn’t lessen when others travel with me, the incredible souls I am blessed to call friends, hold me when the weight of things is too much to bear and that makes the journey a little easier, enabling me to find the beauty along the way. And for that unbelievable, incalculable gift-there are simply no words big enough to express my gratitude and love.

Shaped by Grief

Three weeks ago today, a glorious and gorgeous light was taken from this world entirely too soon. This young man was really just starting his life and those of us who loved him like our own, were shocked and devasted by his sudden and unexpected death. It was an honor to watch him grow from a little boy through his tweens and teens and finally into a young man starting to make his mark on the world. As a part of our circle, he had more "mamas" than he knew what to do with, but there were a few of us who were fortunate to spend more time with him and felt even more of a maternal draw towards him. After news of his death, a group of us "mamas" came together as we processed and grieved and cried and raged and tried to wrap our heads around this enormous and shocking void. Unbelievably, five days (five days!) later, one of these dear "mamas" also lost her son. When I say unbelievably, I mean that in the very fullness of that word. My dear friend lost her beautiful son, Luke, suddenly and unexpectedly. Luke was such an amazing young man, also just starting out into adulthood. He loved so fully and completely. His light so bright others could find their way out of the darkness. And it is utterly unbelievable. When I heard about Luke, I rushed to my friend's home and wrapped her in my arms, trying to take away the tragic reality. She asked me if it ever gets better, and I said, "I'm not going to lie to you, it doesn't get better, but you will find a way." In my experience, you never miss your child less, but you somehow find a way to live with a hole in your soul. For these past three weeks many of us have been walking around in a fog. We have surrounded my friend, Luke's sister, his beloved partner, and their family and friends with love, support and service. We have held their hands and held them up. Encouraged them to eat, sleep, and stay hydrated. Tended to as many of their day to day needs as possible. We have done what you do wnen someone you love is in unimaginable pain, we loved them with all we have to offer. And it is hard. It is so, so hard to watch someone ache to their very core. After Hart died, I remember people telling me they felt honored to be by our side as we grieved. Now I know what they meant. It is such an honor, an intimite, raw, personal walk of love. I would be lying if I said this hasn't triggered some really big feelings and unearthed some memories that had been deeply buried. I'm trying hard not to project or insert myself into her grief, but have offered my friend some of my experiences, my mistakes, things I feel I got right (or right for me, anyway), "permission' to feel any and all ways, to change her mind, to not change her mind, to make decisions, to not have to make decisions. I told her that I know there are things that bring comfort to some and deepen despear for others. So much of grief navigation is trial and error and it is constantly changing. What worked yesterday may not work today. Everyone who has walked this walk knows that grief is an individual, solitary, neverending act. It clings to every part of your life, sometimes as a hardly noticible shadow, sometimes as a giant obstacle blocking your path. There are some similarities, "universal truths," of course, but every experience is unique, nonlinear and life-long. The thing is you want people to understand, you want them to say the words that will ease the pain, to offer grace and healing. You want them to know how losing a child impacts every aspect of your life, every decision, every action. You want them to know you are absolutly doing the best you can, even when it looks like a complete mess. You want everyone to understand the weight of life, because it is so heavy and oh so brief-so, so brief. But really, you don't want anyone to understand or experience the unfathomable anguish of losing a part of your soul and you know there is no other way to understand. It's interesting how grief creeps in without invitation, without regard for time or space and before, even, thought can form. In the past few days I've wiped my cheek countless times to find tears I didn't even know I had shed. I've been surprised how fresh and raw grief can feel-even 18 years later. In an alternate reality, Hart should be graduating high school this spring, but instead I feel like it was yesterday that we were saying goodbye. I'm not sure how much of this fresh grief is because I keep thinking of what could be-what should be, and how much has been stirred by the heartbreaking loss of these two amazing young men. It doesn't really matter, it is part of my journey, one that I cannot avoid or protect myself from, but honestly I wouldn't want to, because the joy is always worth the pain.

DearHart

Eighteen years ago, our beautiful, beautiful baby boy died. When I talk about Hart’s death I try to articulate what a beautiful experience it was. It’s hard to believe through the most heart-shattering occurrence so much beauty grew. But it is in those shattered pieces that true beauty lies.

Usually when someone dies, our emotions are complicated. We are sad. We miss them. We long for them. We relish in their imprint on our lives. We celebrate their accomplishments. We love them. But, often, there are other emotions as well. We have regrets over cross words, hurt feelings, unfinished conversations. We long for do-overs. We chastise ourselves for the times we could have done better, been better. These are all perfectly normal feelings, the expected path that grief takes. All of these things that wove the fabric of our relationship while the person was alive continue to drive our grief for them.

The thing is, Hart wasn't tethered to any complications. He was only love. He was in the arms of someone who loved him every minute of his life (every minute). Because we knew our time with him was short, we relished in each moment. We were able to (for the most part) put our lives on hold while we celebrated Hart's very existence, for the entirety of his existence. His whole life carried the magic of Christmas morning. We loved him and continue to love him, so fiercely and so purely.

The gift of knowing his life would be so short helped us prepare (or at least think we were prepared) for his death. We were blessed by incredible people who shared vital information and walked with us every step of the way. We knew what to expect physically. We knew what we should do during and immediately after his death in order to bring us comfort later. We were told how to talk to our other children and how to involve them in his death. We gathered every piece of information that we could in order to lay a solid foundation for our grief.

The only problem was, of course, you cannot prepare your heart. As Hart died (peacefully, painlessly and beautifully) I kept thinking, "Okay, this is it. This is what you've been preparing for. This really sucks, but you're prepared. You've got this." I went over my mental checklist countless times. As I type this, I realize how completely asinine that is, but I definitely thought I could prepare myself for his death. We had about 15 hours from the time we realized the end was near until he took his last breath. We went to the in-house hospice located at the local children's hospital and were drenched in the love our family, friends and caregivers (who had become family).

I was holding Hart, inhaling his sweet baby smell like a junky about to be cut off from her source. Believing if I inhaled enough, his smell would be with me forever. When he died I let out an achingly primal groan. I felt it bubbling up inside me, but was so disconnected from the sound, I couldn't quite figure out where it was coming from.

People often say that when they lose someone, it leaves a hole in their heart. That's not what it feels like to me. I feel like part of my heart is now made of crystal. It is beautifully filled with all of my love for Hart, nothing can diminish it, but it also can't grow like the rest of my heart. There are no new memories to make, no new strands to weave into our relationship, no need for that part of my heart to be able to expand, but it is solid and beautiful and light shines through it and reflects in me.

They shall grow not old, as we that are left grow old:

Age shall not weary them, nor the years condemn.

At the going down of the sun and in the morning,

We will remember them.

                              -Laurence Binyon 

"The deeper that sorrow carves

into your being, the more joy

you can contain"

                                  -Khalil Gibran

The Long of It

I keep telling myself, everything is going to be fine. I’m sure she’s fine. Then the anxiety creeps in, softly at first, but quickly crescendoing into a cacophony of fears. I take a walk, go for a run, take a bath. Calm returns. I know it’s absurd. I know chances are, it's nothing…. and still, before long, the cycle begins again.

This time of year I am acutely aware of life and death. I know, even though we shouldn’t, sometimes parents have to bury their children. Would I be this emotional any other time of year? I don’t really know, but I do know, I’m really raw this time of year and unfortunately, it's this time of year. 

On top of navigating Baby Girl’s concussion protocols and managing the treatments, appointments, and medications, worrying over the results of the looming MRI has become the tipping point for all of us.

The concussed version of Baby Girl is not my favorite version. All the symptoms she’s experiencing add up to a grumpy, less patient, indecisive, weighed down version of the girl I know. The less like herself she becomes, she becomes even less like herself and the more depressed it makes her. The neurologist told her, “Of course you’re depressed, the concussion is preventing you from being you.” (Narrator-“It was precisely at this moment the mother fell in love with the compassionate, genius who is going to help her baby heal.”) 

Anyway, I could deal with not best version of BG better if I didn't have the nagging unknown of the other thing going on in her brain making me grumpy, less patient, indecisive, and weighed down. It could be nothing, chances are it's nothing. I’m an impatient, information gatherer-I can’t help but search for information. I’ve read more medical papers over the last few days than I can count (and am convinced the ones that you can only “access through your institution” are where the real answers lie), have read many anecdotal cases, and have watched countless brain-side (is that a thing?) TikToks. It’s not great-I know it’s not great. But I can't help myself, I've got to know more. I don’t want to know, but I don’t not want to know. I need to know all the possibilities. 

I keep telling myself odds are in our favor, odds are it’s nothing, of course it’s nothing. But see, that’s what’s tripping me up. I’ve played those odds before. I’ve lost to those odds. Is that why I can’t pull myself together? Is that why I keep searching and reading and watching? When you know, first hand, the other side of the statistics, can you never put faith in "odds” even when they’re in your favor?

In the mean time, lack of sleep is leading to frayed nerves, short tempers and regretful text messaging-including, but sadly, not limited to, an embarrassing voice text of me singing my own versions of “Chu-Chi Face” (from Chitty Chitty Bang Bang), “Hush Little Coco, Don’t Be Mad,” and “Dear Winter” (AJR) to calm her disrupted, stormy sleep (another concussion symptom), on Baby Girls phone, to Baby Girl’s friend, which I thought I deleted, but sent instead. Lessons learned-sleep medicine can be tricky, don’t leave phones in the middle of the bed, don’t ever try to delete, send, read texts without your glasses. 

While we wait, I will continue to pray, and read and run and bathe, take pictures of my sleeping Baby Girl, hold her hand, try to keep myself from doom scrolling and place my faith in hope and maybe the odds.

Bandwidth

 

I’m out of bandwidth. I just am. I’ve drained all my reserves and even my secret, emergency stash is depleted. On the one hand, I’m glad I realize this, on the other hand, it makes me feel like I’m failing.

I guess it’s an unrecognized privilege that I’m usually able to indulge in celebrating, honoring, remembering and missing Hart this time of year. It takes a lot out of me and brings me every conceivable emotion, but the emotions settle in peace, and that rights my soul.

But right now I feel like my emotions are a moving target I can’t quite hone in on, continually moving just beyond all the other, more pressing, responsibilities I need to focus on. And selfishly, I wish I could pause everything else to refill my tank and indulge in my feelings.

Baby Girl (BG) is suffering from the effects of a concussion. Which means lots of doctors appointments and countless PT sessions, endless headaches, confusion and nonstop grumpiness. As I try to help her feel better and (un)gently guide her as she navigates school work, cheer and relationships all while in a perpetual state of grumpy annoyance (both of us), I am reminded that when I’m out of bandwidth, I am of no help to others or myself.

Today we are heading to BG’s teacher’s memorial service. I know this would be terribly difficult under any circumstances, but everything is exacerbated . The dread and fear I’m feeling is just…so much. Too much. While I know neither of us are as emotionally armed as I’d like us to be, I also know how important it is for her to be able to honor and remember her beloved teacher. 

So, today, I’m praying for peace, strength, wisdom and courage. I’m also praying that I don’t word vomit (or real vomit), run out of tissues, nervous laugh or embarrass myself, Baby Girl or anyone else. 

And tomorrow…

Grief is the Price We Pay for Love

Today, I was working on a project, and getting distractedly rage-y thinking about people who throw hate and prejudice around like shrapnel, (agitated and impatient are my default emotions this time of year-but to be fair, hate and prejudice make me rage-y all year) when I was suddenly overwhelmed by these feelings and burst into tears. Because grief sometimes disguises itself when it brushes against me, it can take a beat before I register its presence. When I sorted through the muck in my mind, I found the center of my meltdown—my Hart love surrounded by my heartache.

I'm surprised by how intrinsic grief is. It is without thought or reason, yet somewhere deep inside, suddenly, every piece of my being becomes saturated with a longing for my baby boy.

On November 15, 2022, Hart would be turning 18. As always, it feels like both yesterday and a lifetime ago that he was here, with me, in my arms. But I've learned grief and time don't exist on the same plane. 

People often ask me, when I think of Hart, how I do I envision him. Is it at the age he would be now or as we knew him? My heart almost bursts with their desire to find a deeper understanding and the enormous empathy they show our family. The truth is, it depends. When I'm remembering Hart, my memories are of him as he was when he was with us. I have a mental Rolodex of memories from our time together, and pull them out to examine and enjoy. When I indulge in magical thinking, it is the age Hart would be now. I try to envision what he would look like today. A strong family resemblance runs through all our children, so it's pretty easy to envision what Hart would look like at every age.

I think about what he would be doing now— how he would change the dynamic of our family, what his friends would be like, what his interests would be. Would he get rage-y at hate and prejudice? Would he be loud and boisterous or quiet and reserved?  I wonder if he would enjoy school and love to learn. Would he write? Would he be artistic? Musical? Would he love math? Science? History? Language? Every year on the first day of school, I envision him climbing up the stairs of a school bus and I wonder…

Hart is ever present in our lives. We miss him terribly, everyday. But our love for him is greater than our grief. I love the quote by E. A. Bucchianari, “So it’s true, when all is said and done, grief is the price we pay for love.”

The Grieving Season

It’s my grieving season. This time of year always feels heavy, sentimental, reflective, important. Some years the feelings creep in slowly and unevenly. Some years, like a wrecking ball, fast and all at once. But always the grief precedes thought, the feelings come before the realization. This year was a creeping year until it wasn’t. Seemingly out of the blue, the ball dropped. 

It has been a year filled with trying to support my children as they navigate grief. My beloved daughter-in-law lost her mother earlier in the year and shortly after, she and Oldest Son suffered a devastating pregnancy loss. Oldest Daughter lost a treasured friend, mentor and purveyor of unconditional love and support. And Baby Girl lost a beloved teacher and fierce advocate. As I held hands and hearts, cried and dried tears, I worked to not allow my grief to seep into theirs.

While it felt like the right and obvious thing to do, I realized it wasn’t the selfless act of love I believed it to be. Trying to dodge my grief was not only ineffective, it took so much effort, I was distracted from being who my children needed me to be. I was reminded that I can’t predict what will open the spigot of grief, but I can make plans for coping and manage expectations.  

When my oldest daughter lost her beloved friend, someone dear to all of us, I knew I needed to be there for her, and wanted to be by her side as we honored the memory of someone who loved her like his own. 

But I was scared. Scared that I wouldn’t be able to find the words to comfort her. Scared that I would be inappropriately emotional, unemotional or completely disconnected. Scared that I would myopically, hyper-focus on my grief or deny my grief altogether. 

I honestly didn’t know how I would feel and react, but I did know not acknowledging these feelings would be a mistake. Before the memorial, I told her, “I’m here to support you, but grief comes before thought and I need you to know that I don’t know when and how it will manifest. I may not be 100% who you need me to be, when you need it, but that’s my goal. And I’m here for you and with you, and I always will be.” 

And just saying those words aloud helped. I reclaimed a little power from grief's grasp and faced the fear of disappointing my girl. It was very liberating. The memorial service was beautiful and moving and filled with so much love. And the ability to be fully present felt so much better than playing hide and seek with grief.

I will never grieve the way I once did. I'm incapable of it. I don’t have the same tools I once had, but I've gained some new ones. In some ways, I feel better prepared, in some ways just differently equipped. But I continue to strive to learn more and do better--for myself, but more importantly for those I love.

Grief is fickle. Grief is hard. Grief is ever-changing. Grief never ends. Everyone’s grief is unique. The only universal truth I’ve found in grief is doesn't wait. So, this year, as my grief season begins, I'm remembering that grief will lead, but I don't have to follow blindly.

REMEMBERING HART

Today is the day, the day I dread all year.  It comes now as it did then, expectedly unexpected.

I remember every detail about that day, or every detail of the reassembled shards that I've pieced together from memories that were shattered by grief. I'm sure there are things I’ve forgotten and things I misremember, but the feelings of my memories come every December 8 as acutely as they did on that day.

I remember it was late at night. Our other children were in bed and Steadfast Husband and I were in the family room "watching tv" which during Hart’s life meant the tv was on and we were actually watching our sweet baby. 

I remember SH was holding Hart and I was watching as my baby began to turn blue. Instinctively, I grabbed him, yelled at SH (because fear = irrational behavior) and started vigorously rubbing Hart’s back. I can’t remember who we called, but I remember deciding to take him to the hospice room at the children’s hospital to die rather than foisting an unshakable memory onto our other children by holding vigil at home.

I remember rushing to the car but stopping short as we contemplated putting Hart in his car seat. The thought of him dying alone strapped in his car seat was unbearable, but I am a rule follower by nature, so it took me a minute (and my husband pointing out the reason for car seats is to save lives and that didn’t actually apply here) to make the obvious choice. 

I have no memory of making our way to the hospital, but I remember the amazing Hospice doctor who greeted us. He talked us through what would unfold with such gentle kindness. I still tear up thinking about how he delivered such harsh news in the most comforting way. 

I remember our hospice team coming to the hospital one by one. I had been told to take tons of pictures, the worth of which I couldn’t possibly understand at the time. I asked our child life specialist to take as many pictures as she could of whatever she saw-nothing was off limits. 

I remember watching family members, who were taking turns bringing my other children to spend time with Hart, say goodbye. I remember that watching my children say goodbye to their brother was both the most beautiful and the most heart-wrenching thing I’d ever seen.

I remember our minister coming and blanketing us in love and prayer. I remember many friends coming to pray with us and say goodbye to Hart. 

I remember calling my dearest friend, who was out of town and not being able to get the words out. I finally whispered, "Hart.....it’s time. Hart is dying now."

I remember thinking, I’m prepared, this is really hard, but I did all the work, and it’s really going to pay off.

I remember someone listening for his heartbeat and hearing it very faintly, then listening again a few minutes later and not hearing anything. They said, "He’s gone."

I remember hearing a strange sound that came out of nowhere. I couldn’t figure out what it was or where it was coming from. I remember realizing it was me. 

I remember realizing that no amount of work could have prepared me for his death.

I remember cleaning him up after he died and putting a fresh diaper and clean outfit on him.

I remember the doctor telling us we couldn’t donate Hart’s brain tissue without an autopsy, which he highly discouraged. Disappointment washed over me with such force that I had to grab onto the back of a chair to keep from falling to the ground. He then asked us to give him a little time to see what he could do. He later told us that he had convinced the board to waive the autopsy requirement if he would be willing to swear to the cause of death (which he was more than willing to do). 

After they extracted some tissue, they brought him back to us to say our final goodbyes. I remember the funeral home woman emphatically telling us not to take off his hat. 

I remember after what seemed like hours, but also nanoseconds, I asked my brave, steadfast husband to carry him back to the funeral home liaison, I couldn’t do it.

I remember not wanting to let Hart go... never wanting to let him go.

I remember them handing me a stuffed dog so I didn’t have to leave the hospital empty handed.

I remember feeling the ache of empty arms that I still feel today.

I remember every step of walking out of the hospital. Every. Excruciating. Step. 

I remember being awed by the number of people who were affected by Hart's brief life. I am beyond grateful that Hart resides in the little pieces of him that remain in those whose lives he touched.

My relationship with Hart changed, but it lives on in the memories and stories that I share and the little pieces of him I see everywhere I look.