Elizabeth Leon never saw herself as a writer. Though she frequently recorded her thoughts in personal journals, she kept them tucked safely at home, for her eyes only. But that changed after John Paul Raphael entered her life.
Elizabeth’s new book, “Let Yourself Be Loved: Big Lessons from a Little Life” (Koehler Books, $16.95), tells the story of her pregnancy and brief time with a baby diagnosed with Trisomy 18, a rare and life-threatening chromosomal abnormality.
At age 45 and with several children already, Elizabeth knew the pregnancy would be complicated, but nothing could have prepared her for the journey ahead. From May 2017 to January 2018, she walked through a scary diagnosis, family disagreements, a complicated delivery, and a few precious hours with a tiny baby showered with love. Just as trying came the aftermath, from the funeral and burial to the long battle with grief. Elizabeth’s experience of trial for her family and faith later inspired her to share her story and encourage others through a blog, and now as a speaker and author.
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From receiving the diagnosis to navigating grief while continuing to care for several other children, Elizabeth’s writing lays bare the mess of emotions and uncertainties, as well as physical and spiritual challenges, that she faced along the way. Her big takeaway: life is full of hardships, but by staying close to Christ and opening ourselves to love, we can find peace and even joy amid suffering.
In a phone interview, Elizabeth discussed the impact John Paul Raphael’s story and the book project has had on her faith. Here are some excerpts from our conversation. Responses have been edited for clarity.
Radiant: What led you to write this book about your journey with John Paul Raphael?
Elizabeth Leon: I’ve probably been the one who’s most surprised by the fact that this is where the story has ended up. I’ve always been a journaler — I have a closet full of journals from my whole life. I’m an external processor — my family will all tell you that! It’s really hard for me to keep emotions inside. They need to come out either in words or in my writing. So the experience of grief was the most intense experience of emotion I had been through. I was pouring things out in my journal, and later I started a blog with the hope that my suffering might benefit someone else. After about a year, I probably had six people say to me at different points, “When are you going to write a book about this?” The first time, I laughed it off. And the second time I said, “Oh, that’s funny, someone else said that.” And then it just kept happening. And finally, I just looked up to the Holy Spirit and said, “Okay, I got it. I hear you!” So really, it was a call of obedience. I felt God very specifically asking me to put my story into a book to share with others.
Radiant: In telling your story, you discuss “faith that I fought for moment by moment and came to only after bleeding at the cross with Jesus.” What did your experience with John Paul Raphael teach you about how to live faith amid trauma and pain?
Elizabeth: The answer to that question actually began several years before John Paul was born. In 2016, I was going through a really awful custody lawsuit — which, praise God, never made it to court. But in that season, God really brought me a vision. That’s really the only word I can say. I think I had been out at the gym doing something very mundane, and I came home, and I just had this strong desire to write. I sat down, and I wrote probably for an hour. And what poured out of me into my journal was this vision of Jesus calling me all the way up to Calvary. I was dragging a ladder, and he had me put it up against the cross and climb up. It was very specific and almost graphic, the way the blood was and seeing Jesus’ wounds up close. Coming face-to-face with his suffering, it felt almost impossible to hold myself that close. And I realized that in my hand, I was carrying my own suffering, which in comparison to his was nothing. I really wanted to run away. I wanted to say, “I have no right to be here. You are suffering everything, and my suffering is nothing.” And yet, he beckoned me; I could see his eyes — and theologically, this doesn’t make sense because [in the vision] he already had his wound in the side, when of course [it wasn’t until] he was already dead when he got that — but he called me to climb the ladder and to just place my hand into his side, to take my suffering and put it directly into his Sacred Heart.
What I took away from that experience was this call to deep intimacy with Christ. And that intimacy is so full of suffering, but so much more full of beauty. That connection and intimacy with Christ was the only thing that allowed me to get through the subsequent events of the next few years. Time and time again, I could know, no matter what the Lord allowed in my life, I had this place hidden deep inside me, where I knew he was. Yes, he was resurrected and triumphant and gloriously alive, but he was also still hanging there in suffering. And it was that profound intimacy that really allowed me to continue walking, knowing that I was so deeply known and loved by him in his suffering, that he wanted me. And not just wanted me, but needed me in a way that I did not understand, to bring my suffering to him as well. It was a lifeline for me.
Radiant: Finding meaning in suffering is hard for most of us. In a nutshell, what advice would you give those suffering a loss to find healing?
Elizabeth: Well, really, I have to go with the phrase that’s the title of the book, which is to let yourself be loved. To unpack that a bit, to let ourselves be loved is to receive. But I think to receive, we have to be able to open our hearts all the way. That opening, I think, is where people get stuck, because to open your heart all the way is to see things in our own hearts and in our experience that we don’t want to look at. What the Lord allowed me to do was to tell the truth about my story, to not feel like I needed to hide it or minimize it or polish it up. The book has some pretty ugly parts in it in terms of anger and jealousy and rage, but I believe we have to tell the truth ourselves first. The fullness of Christ’s humanity enables us to be fully human, as well, and we should be so — which is no less than what God wants us to be. Letting yourself be loved is radically accepting the circumstances God allows in your life and how you respond to them. That doesn’t mean that every feeling we have is the last feeling we want to stay with. We move through them. Feelings aren’t sinful, but they could lead to sin, so we move through the feeling.
The intensity [of those feelings] I think, is what can cause people to keep their hearts closed, because without a safe place to open them, or without the hope that opening them would bring any fruit, people keep their story walled off. But freedom comes when we open ourselves. It’s the metaphor of a wound, right? You have to open it up to clean it, and it’s painful. And it’s scary because there is a loss of control when you fully open yourself to all the feelings. But when we love this glorious God who is holding us through it, we can trust him. He is big enough to hold everything that we feel.
Radiant: During your pregnancy, you found yourself both praying for a miracle and preparing for a difficult outcome. What was it like navigating that tension, and what did you learn from it?
Elizabeth: We can know something to be true and hold it in faith, and yet our day-to-day experience and how our body response can be very different. So there is a juxtaposition. We know the Scriptures tell us, “Be not afraid.” And yet, there are events in life that bring us fear. So if I feel fear, am I failing? Am I being unfaithful? Well, I would say the answer to that is no, because we live both spiritual lives and corporeal lives. I talk about this at the end of the book: the challenge of knowing that there is going to be hope, but I’m still called to walk in a valley of tears at the same time. So it really is about surrender, daily. And it’s not just daily; sometimes it’s hourly, sometimes it’s minute-by-minute, constantly reminding yourself that the Lord is close.
I’ve had this little arsenal of Scriptures at the ready — like Proverbs 3, “Trust in the Lord with all your heart,” or Psalm 34, “God is close to the brokenhearted,” or even Philippians, “Rejoice in the Lord, always. I say it again, rejoice!” So it’s that constant renewal, getting up every day and placing myself in God’s care and saying, “I can’t do it, I am nothing, but you are here.” I might not know how to get through it, but I know that with him, I can, and there is just the safety and the security in God alone and not in our circumstances. I learned on the ground, real-time, through John Paul.
Radiant: It was moving to read about your experience asking friends to build a coffin for John Paul Raphael. Could you talk about the challenge and reward of asking others for help?
Elizabeth: It’s exhausting to feel like you need to have all the answers and that you need to do things yourself! Self-reliance is something I have come to realize is very unholy in my life. I actively work to rid myself of it on a regular basis. And so experiences like this that are just bigger than we can handle — like at the very beginning, getting John Paul’s diagnosis — we turned to our community. Our life experience had already provided us with a model for how to be supported by others when you just can’t stand up on your own. And the body of Christ is such a beautiful gift that our Church and our faith gives us. We just trusted that when we turned to those around us, they would step forward and be there, a community that we had built of faith-based friends.
It felt easy to ask people to pray for us, or it felt easy even later to have people bring meals, but this was such a big ask, and there was so much at stake if they said no. I just was so desperate to not have my baby buried in one of those plastic coffins. I just wanted it to be beautiful. So we were just called to take that risk, I think, and again, it goes back to the message of the book to let yourself be loved — to let people love you.
Radiant: What role models or saints have been most inspirational to you in your journey?
Elizabeth: I definitely drew a lot of strength from other women who had gone through this story already. I share a little bit in the book about a few of the people I was able to sit with and just hear their stories. Part of the motivation for me in writing the book was that I drew so much strength from other people’s narratives.
St. Zélie Martin is a big hope to me because she lost many babies, and in her writing, she gets very vulnerable and really frank with God. So I really held onto that and to her writing. And also St. Theresa [St. Thérèse of Lisieux], our parish’s namesake. One of the many reasons I love St. Theresa is that she’s such a giant of the faith, but she is also very big in her emotions. As a woman who has a lot of big feelings, I really could relate to her! Yes, she was able to allow the Lord to refine [her feelings], and then obviously they became so saintly; but especially as a child, I love hearing about her tantrums or like how unruly she was, or how she would stomp her feet up the stairs. I love her for her ability to just feel so honestly and vulnerably, so she really is a role model to me. And then finally, I would say Mary, under so many titles, but specifically Our Lady of Sorrows.