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  • Writer's pictureElizabeth Leon

Now What????

Updated: Feb 23, 2019

We prepared so thoroughly for John Paul Raphael's birth and life. Now what? I don't mean the lifetime of loss we are left with 13 months later, but the reality then of holding a dead child in my arms.

Trisomy 18

I have felt beautiful peace in these days after telling the story of John Paul Raphael’s death. Writing it all out reminded me of how achingly beautiful and sacred that time was and how incredibly grateful and BLESSED we are to have welcomed this beautiful child and loved him so completely, just as he was, for as long as we had.

As I relive that time and bring the memories to the front of my mind, there is silence now at that point in the story. From the moment Ralph and I held a positive pregnancy test in our hands on May 29, 2017 until 2:43 pm on January 5, 2018, we were on a runaway train. We lived in the land of uncertainty and hope and stress and fear and love and hope and anxiety and panic and joy... All of it together. And here we were.


The thing we had feared and dreaded and prayed most earnestly to avoid -- it happened. It was done. Our baby was dead.

This was trauma. I knew deep in my being that my life and my heart had just altered in ways I could not yet understand. But frankly, at 2:44 pm? And 2:45 pm? The rest of the afternoon and evening? There was a deep and profound calm and peace. I think now of Christ’s words on the cross -- It is finished.

We didn't need to watch and wait and worry anymore. I felt every muscle in my body and every part of my soul and heart and mind just let go and sigh -- a slow, deep, full release of every fear held tightly coiled within me for the last 36 weeks. I realize now I felt relief. What a strange word for that moment. I was in no way relieved that John Paul Raphael had died. And yet, even though I had worked every day to surrender to God's plan for our son's life, there was still relief in now knowing what that plan was. It had a number. 1,690 minutes.

Trisomy 18

We prepared so thoroughly for John Paul Raphael's birth and life. What happened now? I don't mean the lifetime of loss we are left with now 13 months later, but the reality then of holding a dead child in my arms. Now what?

I had read extensively and researched this part of our journey. If it was possible my son was going to die, I did not want to be blind-sided by this. I read blogs and scoured the internet for other families and how this went for them. I needed to know what my options were, to hear from other brave mothers and fathers what they did that might make this terrible time the tiniest bit less terrible.

I knew that I wanted to spend as much time as possible still holding John Paul. He was my son. He was and is so deeply loved. And even though his soul was gone and his body lifeless, I grew that body in my womb and I loved it deeply too. And we had had so little time to get to know him. For families in our situation, the time we spend with our baby after his or her death is precious.

We spent just shy of 22 hours with John Paul Raphael in our hospital room after he passed. Deeply spiritual and quiet minutes full of love. I confess I was nervous about this. Intimately encountering death was completely new to me. I had seen very few dead bodies in my life and all from a reasonable distance. There was no way to predict what this experience would be like. How would it feel? How quickly would his body change? Would there be some disturbing alteration in his skin or his smell or how he felt?

The hospital was perfect in accepting and honoring our wishes to stay with John Paul as long as possible. I don’t even remember having a conversation with anyone about them wanting to take his body away. Everyone seemed to treat our desire to keep him with us and to hold him until I was discharged as perfectly normal. I was prepared to advocate aggressively for this, but was so very thankful there was no need. His nurse Tia reassured us that his body would be just fine. We would likely see no unusual changes as we continued our time loving our baby.

I changed his diaper for the first time after he died. We lingered with his body to soak in and memorize every part of him. We touched every finger and toe and fold and his smooth newborn skin, still warm. We kissed him and loved him no differently than if he was still with us. We made sure he was perfectly clean and then slowly dressed him in a pair of fleecy dinosaur pajamas. We put his soft gray cap back on his head and wrapped him in blue blankie. We took dozens of pictures.

We had called our family during the long vigil of his dying. Sometime after 3 pm, my mom, Maggie, Leah, and Nathan returned to say their goodbyes. Our daughter Alicia had been unable to travel from Virginia Beach due to an unlikely southern snow storm. She arrived that evening with her boyfriend to meet and say goodbye to her new brother, all at the same time.

It was heart-breaking to watch our children come into the hospital room carrying their stunned and shattered love. I am sure each of them had their own fears about confronting death this closely; for my step-children, so tragically, it was not for the first time. But, together they all loved their brother so deeply and bravely, even when perhaps they did not think they would. My heart fills with love for them as I consider the impact of this journey on each of them individually.

Trisomy 18

Nurses and other staff members stopped in throughout the afternoon to offer their condolences. We experienced so much love and respect for this one brief life, so many tears for the time we would not share with him. By 9 pm everyone had said their final words to John Paul Raphael and the hospital room was dark and quiet and we were alone. Ralph and I were so tired and numb, but the nurses still needed me to get up and move to continue my own healing. We took a long, slow late-night walk through the hallways with John Paul Raphael. When we got back to our room, weary through and through, we curled up in the hospital bed, our little family of three, and slept deeply, John Paul Raphael tucked between us all night long. There was a ridiculous freedom in being able to sleep with him during that second night with no worry about his condition or his health. Just to hold him close with no more concern or fear.

The morning of January 6th dawned heavy and sad. A thick grief covered me sometime during the night and I felt like I was in a dense, dark cloud. Anxiety grew in me as I remembered that sometime on this day I would be asked to hand over my baby. We were working with the office of Decedent Affairs to coordinate with the funeral home for when someone would be coming to pick up John Paul Raphael. This was the next worst part. I knew we had to let him go. I knew some stranger would arrive and take him and put him in a car and drive him to a funeral home. I could not allow myself to dwell on the details of these arrangements, but I couldn't help the fleeting thoughts flashing through my mind. Would they put him in a box? Would they put him in a freezer? How could I allow this? Why couldn't I just take him home and hold him until we buried him??????

A beautiful new nurse came in that morning and introduced herself. I was sitting on the couch holding John Paul Raphael when Monique walked into the room. She came and sat in a chair at the end of the bed and looked me deeply in the eyes.

"I am so, so, sorry about the loss of your son. Could I please hold your baby?"

She came over and I offered her the lifeless body of my beautiful child and she took him back to her chair. And she held him. She oohed and aahed over him and commented on his perfect nose and silky hair and how handsome he was. She rocked him and talked to him like he was a living child. She respected and honored the gift of his life. I have no idea if she understands the tremendous blessing of her presence and attention that she gave us that day. The value she placed on our son and the wonder she shared over his very creation affirmed what every new parent longs to hear. Your baby is beautiful. Look what you made. This child is a miracle. A job well done, Mom and Dad. I look back at her gift to us with marvel and gratitude. I wonder what in her own life taught her the profound importance of honoring our loss in this way.

After she left, Ralph and I passed several hours sitting and grieving and crying and listening to John Paul Raphael's playlist of music. We sprayed the room with sandalwood again and tried to bond this experience of holding him with the music and the smell – something to help us re-connect to these profound moments well into the future. At some point, the genetics team came in and said the results of the cord blood testing were back and they confirmed the diagnosis we already knew. John Paul Raphael had complete Trisomy 18. It didn't matter. It was beginning to feel like nothing else would matter again.

Just after 12 o'clock, Tia came in with the shocking news that they had heard from the funeral home and they would be here at 12:30 p.m. What????? Panic flew through me. Thirty minutes? I only had 30 minutes left? I had to finish needing my son sometime in the next 30 minutes? This news broke the dam holding back my maternal grief and it flooded out. The wails of deep, guttural sorrow that I had been holding back gushed forth from my shattered heart. I clung to John Paul. Crazy thoughts raced through my head that included hiding him or racing out to the car with him or simply refusing to release my grasp. Ralph was so calm and so gentle and held me as I held our baby.

“I am so sorry I couldn’t fix it,” he whispered, “This is so hard. I am right here.”

Repeat. Repeat. Repeat.

As the minutes ticked on I couldn’t help myself from picturing some orderly, some creepy nobody wheeling a sterile bassinet into our room and depositing my baby’s body in it and leaving to rattle him down the hallway. A metal elevator. A foul smelling old green hallway in the basement with vaults of dead bodies on either side. A loading dock with a dark sedan and an open trunk…

“There is no way I am letting a stranger leave with our son,” I told Ralph suddenly with a steady and clear voice, the voice of a Mama Bear prepared to draw blood to protect her child.

Ralph looked at me, unsure how to safely respond. He heard the grief and agony and longing in my words – the sorrow that this story did not have the ending we wanted and that John Paul Raphael would not be coming home with us. He was leaving instead to go to some unthinkable location in a funeral home in Leesburg until we could make plans to bury him.

He looked me deeply in the eyes as he thought. “What about Tia?” he asked me gently. “Would it be okay for Tia to carry him away?” Tia, the loving and kind nurse who had walked with us each of these three days. Who helped Ralph bathe John Paul and helped me express colostrum and listened to his heart and answered our questions and sat vigil with us and sang as he died. Tia, a mother with her own toddler at home. Tia, with big, gentle brown eyes who I knew was grieving with us.

“Yes,” I whispered in the tiniest of voices, betraying my own heart as I gave my consent to letting John Paul Raphael go.

It was only a few minutes later that Tia came in and I could tell it was time to say goodbye. We could not stop the tears. We carefully took John Paul Raphael out of his soft blue blankie. I held him against my heart and wept as I drew strength from a well-spring far beyond myself and forced my hands to release him to Ralph. He wrapped him in a blue and white crocheted baby blanket the hospital had given us on Thursday as a gift. He held him out to me to kiss and say one more goodbye. He walked to Tia and together they stood and stared into that small, sweet face before Ralph kissed his son one last time and Tia slipped out of the room.

At this point in the movie in my mind, the scene should cut to a sunset and Barber’s Adagio for Strings or there should at least be some kind of weepy montage of grieving parent moments with a poignant soundtrack. Anything but the reality of those agonizingly slow empty minutes that ticked past as we sat in the silent stillness of the hospital room after Tia left with our son -- minutes that loomed in front of me for the rest of my life.

There was no script for what to do NOW. I was in that moment all those clichéd terms that became cliché for a reason: shocked, stunned, full of disbelief, numb, empty, bleeding, dazed, torn apart, incredulous, frozen, aching. I longed for my own heart to stop as well so that I could be wheeled away alongside my son. You hear this from bereaved mothers – this surprise and astonishment that despite everything that just happened in the death of our child, we are still here. Why am I still alive????? I feel dead, but I am not.

Over the next few days, the dead feeling came and went. It was actually preferable to the not-dead feeling which was total agony. A raw cavern ripped into the very center of me. A fire of despair that burned brightly for months and months and months. An emptiness I think only other bereaved parents can understand.

There is no scarcity in grief and suffering and I know comparisons are usually fruitless, but it was comforting during this time to convince myself that perhaps this was, in fact, the worst grief. That I have endured the worst life could throw my way. That something even more cruel isn’t lurking out there waiting to still happen to me.

I am shocked at myself for writing that. Of course, I imagine there are worse things. Suicide. A long drawn out death of a child by a painful terminal illness. An abduction that remains unresolved forever. But it is HUMAN to want to think this is the worst of it, that life is not holding back its final knock-out punch.

I was discharged a few hours after John Paul Raphael was taken away. I felt intensely fragile leaving the hospital with an empty womb and empty arms. I worked to avoid eye-contact. I had zero-confidence in my own ability to interact with anyone in a reasonable way. The whole world looked and felt different. I barely recognized it or myself. I remember playing John Paul’s music in the car and both Ralph and I crying most of the way home. My dad and Joann had stayed in Virginia to take care of the other children. When we arrived home, I carefully made my way up the stairs and into our room – beautifully clean with a new soft blanket and flowers and signs from the children on our pillows. “You are so strong” “I love you!” “The pain you feel now can’t compare to the joy that is coming.” I was full of love for these babies of mine who longed to do anything to help us feel better.

As time has past, I have found grief to be an unpredictable companion. Sometimes, I am "fine", whatever that means. Sometimes, all these months later, the emptiness and loss are as great as those first few hours and days and I long for someone to take care of me again. I ache to give myself permission to announce that today, it is simply too much to carry. I cannot do it. I need help. I need to get back in my bed and have someone hold me and stroke my hair and say I am so sorry that it hurts so badly and bring me soup and let me play sad music.

The problem I face with my own healing is the expectation that once you are strong enough to carry your grief down the stairs and out the front door, once you shower and put on real clothes and leave the house and begin to re-enter the world, there is this presumption – I acknowledge it may be one I am placing on myself – that you should be strong forever-more. That you are not “allowed” to have another day when you

Just. Can’t. Do. It.

I am so lucky to have a dear husband that has been so patient and steadfast during our journey. Who has stayed home to care for me or left work to come home again and again when I just needed him. I am so lucky to have friends that are gentle and understanding and patient as I continue this rough ride. I have a few dear family members that give me time and space and acceptance as we learn to keep living. I am grateful for the understanding that it is okay for me to try and be whole and broken at the same time.

I remember sitting with a beautiful couple I have known for years. They lost their 6th child to Trisomy 18 almost 30 years ago. They came over in those first blurry weeks of our loss and sat with us on our couch and let us cry as we shared about John Paul Raphael and they cried as they told about Mark Francis and his brief, beautiful life. They were blessed with almost 6 weeks of time with their baby before he surprised them with a final breath and left them in their own devastating loss. I remember the husband saying to us in regards to their dark and terrible grief: “We had to figure out to how to live through this. To live with it. We had to realize this might not be the worst thing that ever happened to us.”

Tomorrow they will bury their second son – gone at 49 from colon cancer, leaving a wife and two beautiful children. What a brutal honest lesson from that father’s suffering – this pain may not be the worst thing that ever happens to me. My heart breaks for them because, of course, burying a second child is far worse than burying just one.

I let myself think about those words now, 13 months and 1 week and 2 days after John Paul Raphael died – those words of a father that still cried over his lost baby 30 years later: this may not be the worst thing that ever happens to me. Is it, in fact, the worst thing that ever happened to me? Of course it is, I think quickly, but it is an immediate conundrum.

John Paul Raphael was beauty and love. He was a gift and he leaves a profound legacy. How could this be the worst thing that ever happened to me? There is SO MUCH PAIN, but the transformation that God is working in me and through me is a blessing. The love I have learned to carry and my understanding of suffering and my own frailty – these are priceless. My connection to the Lord and to Eternity has strengthened and my ability to learn to live without fear – to let myself be loved – these are a treasure. What if the worst thing and the best thing are really two sides of the same coin????

A dear grieving friend shared her wisdom about this with me: “It's all so hard. But I am so grateful for the truths that I now know. Which also makes me mad for being grateful because somewhere it makes me feel like -- wait, does that make me grateful my son died? It's a bit of a mindbender and it starts to get "chicken and egg"ish to me. But I hold something deep inside that sets me apart from other people (or maybe I should say from my former self) and it's not just grief or profound loss. It's something that warms my soul and sustains me... when I channel it. I pray that you come to know that feeling too someday.”

I feel it. The profoundly purposeful gift of life and death and love and suffering. It expands my heart and I hope in some way helps the light of Christ and the love of God to shine more brightly in and through me.

Thank you for your legacy, John Paul Raphael. Let Yourself Be Loved.

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1 коментар

Katherine McKeon
Katherine McKeon
21 лют. 2019 р.

Oh sweet Betsy. Again, I am around, not working, I have time and compassion and yes, I can bring you soup and we can play 'Adagio for Strings.' Interestingly, when I was in Rome many years ago with the Basilica choir, the CUA graduate orchestra played this during our concert for John Paul II in the beautiful Sala Clementina at the Vatican. It will always be one of my favorites. I'm here whenever you need. xoxo

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