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.