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  • Writer's pictureElizabeth Leon

Walking with John Paul Raphael

Updated: Sep 28, 2018

Every mother and stroller I see reminds me how I long to take my sweet baby for a walk. We have been given a very different kind of journey instead. I am trying to find a way to embrace it. "Even though I walk through the darkest valley, I will fear no evil, for you are with me." Psalm 23:4


One year ago, I found out I was pregnant with my sweet baby. Of course he was safely alive inside of me for at least a week or two before that, but May 29th, the Monday of Memorial Day weekend, was the day my journey began with John Paul Raphael – although at that time we of course didn’t know if he was a “he” or a “she” – only that there was a sesame seed- sized tidbit of love growing away inside of me. In the past 20 weeks and 4 days since he died (20 weeks, 4 days, 8 hours, 32 minutes…), we have been in the depths of grief, an abyss that has been void of John Paul Raphael completely.


We have been living in limbo, caught in the space between where he wasn’t and the memory of when he was. John Paul Raphael was never January 6th. He was never February or March or April. He was never Valentine’s Day or Lent or Easter or the first day of spring. He only began on some unknown day in the middle of May. Today marks the anniversary of my concrete awareness of him and the beginning of the walk I will take with him in the footprints he and I created together from May 29th to January 5th. I never got to take John Paul Raphael for a real walk and yet somehow the image of journeying with him is very concrete. There is no stroller or baby bjorn. Sadly, no bouncing 4-month-old baby on my hip. There is instead a still, lifeless, beloved body in a pair of fleecy dinosaur pajamas, wrapped snuggly in a soft blue blanket, soft downy head covered in a gray cap.


I am remembering as I write that I DID take this baby for a walk after all. Friday night in the hospital, hours after he had died, I was finally ready to get out of bed after my surgery. I had been freed from all tubes and needles and my body, one day post emergency surgery, needed me to try and move around. It was after midnight, all our visitors long gone. Ralph and I were alone in our room and he held John Paul Raphael for me as I slowly made my way out of bed, testing the feeling of my legs and my stitches and measuring my pain. When I was ready, he gently put sweet baby back in my arms and we began our slow shuffle out of the room and around the deserted over-night hallways of the high-risk perinatal unit. I had been separated from the other mothers and babies in order to provide in-room oxygen for John Paul Raphael, but it also had the merciful secondary effect of eliminating my exposure to all that health and happiness. Fairfax Hospital had recently opened this unit and it had the glossy, freshly decorated look of a nice hotel. The dim, silent corridors were lined with door after door, all but one open to show an empty hospital bed. As grateful as I was to be out of bed and doing this completely normal thing with my baby, I couldn’t help feeling like I was in some alternate version of The Shining as I shuffled along with Ralph, holding the lifeless body of our son in my arms. We saw no one, even as we rounded the corner at the nurses’ station, the buzz and beeps of the monitors the only sound. In hindsight, I am so grateful for the darkness of the night outside the windows, the reverent hush in the hallways, the respectful absence of all ordinary and normal activity. Our world had stopped along with John Paul Raphael’s heart. This was our funeral procession -- this one walk we would ever take with our baby – and I want to pretend the whole hospital held its breath in shared awe and grief as this one perfect, lost baby passed by.



John Paul Raphael and I are together again as we cross into the memory of time we shared last year. I know he will come to life in my imaginings and rememberings – I can’t wait for September when I first felt him move in the morning light of Venice. The many, many ultrasounds where I cherish the memory of measuring every limb and watching his heart beat, loving these hours together in the womb-like darkness of the sonogram room. It is a strange thing – this anniversary of sorts. There is so much joy to be where I can “find” him again. We lived June together last year and the last day of school, the 4th of July, Lake Week, one glorious Fall. I know I will mark each milestone silently in my heart. “Last year on this day I was still pregnant; when I did <this> I was still pregnant…” Repeat. Repeat. Repeat. I wonder if maybe I can postpone grieving while I focus on reminiscing. How’s that for magical thinking? There is no way for every joy not to be layered with sorrow when the story ends so abruptly on January 5th. No denying the tragic, undeserved ending.


I have read about how the body knows organically the impact of these silent memorials even when the brain may not completely process them. I have felt that this week, plunged into a deeper sorrow than normal. I have unraveled in grief for several nights now in a way that feels like Week 1 all over again. And maybe in a way it is. Maybe I am looking at that pregnant-and-as-yet-undestroyed version of myself from last May 29th and grieving her too. She couldn’t see what was coming for her.


I’ve thought a lot about “before” when it comes to grief and death. Isn’t that one of the natural responses when we lose someone? I want to go back. The bereaved may find themselves living in the past in hopes that somehow, they can rewind the clock and go back to the time of their loved one’s life, back to the time before their loss. When a baby dies, it is tricky because if you try this conjuring in your head and you go TOO far back, you erase their life. Of course I want to go back. But only as far as May 2017. Any further and I live in a world where John Paul Raphael never existed and this is worse than living without him. I want to go back just far enough that I can relive every moment of that physically and emotionally challenging pregnancy just so I can spend more time with him. I want every bit of his 35 weeks and 6 days in my body and every drop of the 1,690 minutes of his life. I even want the 22 hours after that when I held his perfectly still body close against mine in the hospital and the hours we had for our final goodbyes at the funeral home. It was not enough. It could never be enough.


I recently finished a memoir by Elizabeth McCracken called An Exact Replica of a Figment of my Imagination about her experience after her son was unexpectedly stillborn. She shares precisely my own experience of floundering after the loss of John Paul and the somewhat unique nature of grieving a baby. She describes on page 97 the unnerving reality of going back to life after the death of her son:


“Our life as usual. We picked out restaurants, opened a bottle of wine at 6:00 p.m. if we were cooking at home. On the one hand it was comforting and even lovely… and on the other hand the very usualness, the loveliness, the freedom to do what we wanted, was a kind of torture: look at your unencumbered selves. After most deaths, I imagine, the awfulness lies in how everything’s changed: you no longer recognize the form of your days. There’s a hole. It’s person-shaped and it follows you everywhere, to bed, to the dinner table, in the car. For us what was killing was how nothing had changed. We’d been waiting to be transformed, and now here we were, back in our old life.”


Back in our old life. Waiting to be transformed. (oh yes – but not like this!!!!) So much is the same and at the same time nothing will ever be the same again. Like the author’s title – an exact replica of my previous life and yet so intrinsically different that I am still finding my way around the place.


But I remember you today, John Paul Raphael. I remember this day when Daddy and I celebrated your presence with slurpees and my love for you exploded into being and my dreams for you began. I feel a great emptiness tonight in my arms and heart and womb. It is a long road we will walk together in this life – you and I, your silent invisible presence as real as the other children around me. I will carry your memory and the immense love of a momma for her child; I will carry and spread your mission to let yourself be loved. You will carry me in a way I cannot see or understand, but I believe to be true. I can’t wait to be with you again someday. I miss you, sweet baby.

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