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  • Writer's pictureElizabeth Leon

Ugly Grief

After 10 months of grieving, I gave myself permission to stop trying to grieve well and just grieve. What followed was ugly, messy, and profoundly healing.

From the moment we got John Paul Raphael’s diagnosis and we understood the limitations of our beautiful son’s condition, I met grief. Grief forced itself into our world, uninvited, and made it very clear that it was never going to leave. I sat with grief in those early days with a clear understanding that grief and I were going to get to know each other very, very well.

trisomy 18

I had met grief before, of course. You don’t get to be 45 years old in this broken world without any grief in your life. Grief from my parents’ divorce. Grief from my own divorce. Grief at the pain in my children’s lives. Grief over a miscarriage. Grief over my daughter’s mental health struggles. Grief from the loss of grandparents and a nephew and a cousin. Grief that several important relationships were not what I longed for them to be. Grief from the loss of expectations I had for my own life.

But grief from the loss of my child? I never wanted to know this kind of grief.

Grief was on the list of things I worried about during my pregnancy with John Paul Raphael. My child was going to die. I didn’t know exactly when it would happen, but we had every reason to expect it in minutes, hours, or days after his birth. Months if we were lucky. I was so afraid of the loss and the pain. Of my heart being shattered. Of the grief.

I loved my sweet baby so much already. I loved him when he was just a longing in my heart. I loved him even more when I saw his heart beating on the ultrasound. That love grew right along with his tiny body until it filled my whole being just as he filled my womb. That love exploded into the world on January 4th, 2018 and hung thick in the air like clouds, covering us, drenching us with its strength and purity and holiness – no longer just my love, but LOVE Himself present with us in and through our son in the freshness of his life and the expectation of his death. And I knew every step of the way -- probably because I had read it somewhere but also because I think it is written on our hearts – I knew that the cost of this love was grief.

trisomy 18

For every measure of love I had for my son, there was an equal measure of grief coming my way after his death. This is a truth I am learning on my journey. A painful and liberating truth. Grief and love? They are really the same thing. Two sides of the same coin. A single reality seen from two different perspectives. They are indivisible in their very nature. As long as I love my son and we are separate, there will be grief.

Because I feared this grief so much, I began to learn everything I could about it. I researched. I read books. I read memoirs of child-loss. I searched out blogs of other families with sick babies who were going to die. I spent hours reading stories about other Trisomy 18 children to glean whatever wisdom or coping skills I could from their experience.

I didn’t mean to, but I was pre-managing my grief. In my fear, I convinced myself that if I could educate myself about the unknown, it wouldn’t be so bad. Ralph and I didn’t always see eye-to-eye on this, but I tried to explain by comparing it to the trip we were taking to Italy during my pregnancy. Foreign travel can be a little daunting or potentially even a little scary. In order to really EMBRACE Italy when we were there, I wanted to be prepared. I wanted to make reservations and research the sights and schedule some tours, scope out the good restaurants, read the guide books. This gave me so much to look forward to and would help me relax once I arrived. If I could learn about the sights and the artists and the churches ahead of time, then later, I could just enjoy the moment.

In much the same way, Trisomy 18 was a foreign country. I believed that learning everything I could about the experience of losing my baby would help me when the time came to live it well. And you know what? I was right. Mostly.

When John Paul Raphael died, grief hit me like a tidal wave. Life changed instantly and brutally. I have spent much of my blog sharing about this experience. Yet after he had been gone 10 months and “real life” had more or less resumed, I naively thought I had seen it all. Grief and I were good buddies now. I knew the ins and outs of navigating this agonizing road and we were getting through it.

trisomy 18

In October of 2018, my dear cousin Martha was ready to deliver her first child. I wrote about meeting the adorable Celia Lowry here, but it was after that first encounter with Celia that I realized I had not yet learned all about grief.

After returning from that weekend of holding and loving Celia, I began to disintegrate. And not in the gentle, broken way I was used to falling apart. After meeting Celia, the foggy depression I had been living with gave way to a razor-sharp brittle edginess. My skin felt different. I was prickly and uncomfortable in my own body. I didn’t want to be touched. I had a jittery heightened discomfort as if I had just polished off way too much diet coke, except I don’t drink caffeine. I was snippy and irritated and angry at just about everything.

These feelings came to a head one evening when my husband shared a clueless text he had received from a female co-worker. She had recently had a little boy and there were some life-threatening complications at the end, but it all turned out well. She was texting Ralph to thank him for his support during her pregnancy and ended with the line: “It must have been your prayers that saved my baby.”

It was at the moment I read those words that I could finally name the emotion that had been lurking inside me for the last few weeks: Rage. And that rage now had a target. There is no way to sugarcoat the firestorm of emotion that roared through me. Angry, violent thoughts and ugly words filled my mind and body. I had the actual thought: I want to kick that woman in the face. What a shocking and vicious and brutal statement, but it was true. I ranted and screamed in my head. HOW DARE SHE suggest that my husband’s prayers saved her baby!!! Don’t you think if his prayers were going to save a baby THEY WOULD HAVE SAVED OURS??????????? I was a madwoman.

It didn’t take long for the still small voice in me to recognize the rage was not in fact directed at this grateful, new mother. I think this is one reason it took so long for this rage to come out. Rage, like anger, is most effective when directed AT someone or something. Shooting an arrow into the air is nowhere near as satisfying as launching it fiercely into a target. However, in living through the loss of John Paul Raphael, I had no bullseye. I wasn’t angry at God or the doctors or the hospital or Ralph or myself or John Paul Raphael. There was no one at fault, no blame to place. And yet, the rage still arrived, barreling through me in ugly, violent spasms. For weeks I raged as the angry grief inside me forced itself out, inciting a rebellion against the unacceptable reality that my son had died. I wanted to act as unreasonably and irrationally as that reality felt.

In one frenzied moment, I grabbed a Costco-sized box of cornbread mix and hurled it to the ground in my kitchen, desperate to find satisfaction in this action. Its unsatisfying THUD heightened my craziness. I grabbed the next thing I could find, a 2-cup Pyrex measuring cup and hurled it onto the hardwood floor. The sound of its crash and the explosion of thousands of tiny pieces of glass were EXACTLY what I needed. YES. It absolutely matched the chaos inside my heart.

I began to create the “Smash Pile”. I went through my house to find any chipped, old, faded, or unwanted breakable items and created a pile on the bench in the kitchen for the next wave of rage. It didn’t take long. When the rage slammed into me, I grabbed a pile of dishes and stalked through the snow and ice on the back patio to the cement steps coming up from the area-way to the basement. Like a crazy woman, I hurled piece after piece into the stairwell, relishing how they broke into shards and fragments. The strong motion and intensity of using the muscles in my arm with force was perfect. The effort and the release satisfying. The cold air in my lungs made me feel alive. The sound and sights of the destruction comforted and calmed me.

trisomy 18

On another day, I felt flooded by emotion after a conflict at home and found myself quickly incapable of regulating my feelings. I fled the house and drove to the Potomac River, walking in 20-degree temperatures and high winds down to the riverbank, areas of ice crunching beneath my feet. There was a wildness, almost an insanity, that seemed to be growing inside me. I looked at the rushing water and longed to be swept away. Not to end my life, but to end the feelings that engulfed me without hope. I found a huge branch and thought for sure that cracking it against a solid tree trunk would bring me the relief I so desperately craved. I was outrageous as I picked it up and swung with all my might. The actual physics of the equation caused me great pain as my feeble body simply absorbed the force I was hoping would end in splintered wood. Failure. I used my voice instead and howled into the wind and water. There were no words, only a guttural, raw, raging lament.

One day my rage fueled an argument with Ralph and I tried to flee the intensity of my own heart by hiding out in the basement bedroom. I curled up in the dark under the covers with a pillow over my head, sobbing and wailing. When Ralph came in to try and make sense of me, I began to scream at him. Horror-movie screams with every bit of strength I could muster. I screeched at him to GO. GET OUT. JUST GO. JUST GO. JUST GOOOOOOOOO. My wails left me only empty and drained because what I really wanted to scream was JUST BRING HIM BACK. Ralph was so beautiful and gentle, returning to me and just gathering me into his arms as I cried.

During this time, there was no rational explanation for what could set me off. The triggering event rarely had anything to do with the grief of losing John Paul. It might instead be anger at my husband or my kids or something in the world. It could be outrage at someone else’s suffering or some injustice. Any negative emotion tapped into the rage hidden just beneath the surface of my heart.

trisomy 18

This was a scary time for me. I had some clarity that there must be something “normal” about what I was going through, but I also barely recognized myself. While I hoped I was “progressing” well through the grieving process, I clearly still had more work to do. I was confident that many people found rage to be a part of the grieving process. I believe that I needed to meet rage and experience it fully in order to move through my grief in a healthy way. But part of my confusion was: why now? Why was I so incredibly angry 10 months after John Paul died? It took an emotional session with my therapist to make sense of this all.

I learned that in my longing to trust God during our journey with John Paul Raphael, I had minimized the human reality of what we went through. I came to appreciate that in trying to be prepared for what the experience of John Paul Raphael’s death might be like, I managed to normalize the unthinkable. In order to cope with the unimaginable scenario that he would die in our arms, I OVER-imagined it so that I could feel some sense of control. The good part of that is that when the time came, I WAS prepared. I was able to soak in the minutes we had with him and not be overcome with panic or worried about what decisions needed to be made. The bad part is that I had over-prepared to such an extent that somehow the AGONY of what we lived through hadn’t yet impacted me in the way it should, even 10 months later.

Clinically, my therapist shared that the purpose of the rage was to try and integrate the interior intensity of my emotion with an equally intense exterior experience. So, wanting to smash, hit, and break things; the need to curse, yell, and scream; even shocking thoughts of violent actions – these were all part of my heart and soul trying to process and make sense of a traumatic and horrifying event, an event I had apparently managed to convince myself was not so horrifying.

It took a beautiful new baby in my life to awaken my heart to these truths.

trisomy 18

As I held Celia after she was born, I kept replaying the scene of John Paul Raphael’s death in my mind. He was alive and pink and adorable one moment, and still and green and dying the next. Celia was loved just as much as our sweet baby. What if she were to just stop breathing here in Aunt Mary’s living room? What if she were to turn green and die? And there was nothing we could do to help her? And we just had to watch it happen and surrender? I kept seeing Celia’s death over and over. It would be unimaginable. Horrifying. Devastating. Shocking. Traumatic. Life-altering. Shattering. These words are completely inadequate, but I was convinced with complete clarity that to lose Celia like that would rip her parents open with a pain that no person should ever have to endure.

Well, there you go. Without my conscious mind even connecting the dots, my heart managed to. If losing Celia would be all of those things, then losing John Paul Raphael also was. Shocking. Traumatic. Life-altering. Shattering. So why had I been so freaking CALM about it all for months? I now understood the rage. It is RIGHTEOUS rage. It is rage that screams that losing our son was NOT FAIR. It is NOT OKAY. We did NOT DESERVE it. It is the rage of LOVE against death that was NEVER meant to be a part of life. It is rage at the enemy of our souls whose insidious lies exiled us in this fallen world to begin with.

Giving myself permission to feel rage is enormously helpful to my grieving process, but it has been really dreadful. Humbling. Alarming at times. I am grateful that with God’s help and Ralph’s presence, I have not in any way hurt myself or others. Being honest and open about the intensity of this stage of grief has been freeing and keeps me from judging myself for how I need to process this devastating loss. I can see now that I put pressure on myself to “grieve well” when in reality I just need to grieve.

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Ephesians 4:26 tells us, “Be angry and do not sin.” Could I let myself be loved in the raw ugliness of grief? In the despair and the violence and the hatred of death and the struggle to be hopeful? Even here? YES. I can be authentic about the surprising ugliness of my journey so that any of you who may also be struggling with ugly, messy emotions know you are not alone.

Come with me. Give yourself permission to feel your own story from deep in your heart, whatever it is. Don’t make it be clean and neat and tidy. Sometimes we need to be wild and crazy and fierce. Try and find time and space to listen to your heart and your emotions. These crazy places are an invitation to pay attention to some part of you that needs love or compassion or comfort. Let the Lord in to love you wherever this leads.

So this is what grief looks like today: a pile of shattered dishes, a throat sore and raw, a gracious, forgiving husband.

Missing you sweet baby. Let yourself be loved.

trisomy 18

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