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

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.