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  • Writer's pictureElizabeth Leon

Why It Was Worth It

Updated: Feb 23, 2023

How can we measure the cost of love? How can we know what we are really capable of until we find ourselves on the brink of the hardest thing we have ever done?

We recently re-watched the movie Arrival where (spoiler alert!) the main character played by Amy Adams receives the gift of seeing the future from a visiting alien species. With this gift comes the knowledge that the child she will have someday is destined to die as a teenager from a rare disease. She has a beautiful response to this dark and painful news: Despite knowing the journey…and where it leads…I embrace it…and I welcome every moment of it.

These words echo in my head as I think about my own journey with John Paul Raphael. Yes, yes, yes. I have said those same words myself over and over these last 7 months without our baby. I too have embraced the life of my child even knowing the limitations it would have. I would do it all over and over again just for those 1,690 minutes. I know this deeply and truly. But I challenge myself – why?? Why was it worth it? Why is it still worth it? How does this make sense?

I have been asked to do an interview next week with a small news show in Hazleton, PA to talk about our sweet baby and the impact of his life on the pro-life movement and how his story could be an encouragement to those facing a difficult prenatal diagnosis or a crisis pregnancy. I am so excited to speak my baby’s name and share the gift of his life and the legacy I know he left in my heart for me to share with the world. I feel inspired by this and so in love with this darling child I held in my arms for far too short a time. But what of the pain? How do you try and tell someone a lifetime of loss and agony is worth it?

Having John Paul Raphael was never a pro-life issue for me. He is my son. I wanted him before he was even conceived. I dreamed of him. Waiting for his arrival, I already celebrated him and I grieved hearing the news that he might not be healthy enough to stay with us for a long time, but there was no choice. There was never a choice. The choice was made when I fell in love with my husband and longed to have that love become incarnate in the gift of a child that we could enjoy and grow with and love forever. It was never a pro-life/pro-choice issue for me. I understand that being raised Catholic and having a deep love for the Lord and the Church means that inherently a pro-life mindset was instilled in me. I have been to the March for Life and protecting the unborn is indeed something very important to me. But for John Paul Raphael, that was never the point.

In fact, living through an incredibly difficult pregnancy, both physically and emotionally, gave me a deep compassion and understanding for why someone else would want to just end it. Living in uncertainty and fear is brutal. Living powerless to the outcome of your child’s life is fierce. Waiting for the ax to fall is terrible. I can appreciate the temptation for some women to want the agony of the unknown to just be over. I can grasp how those decisions are made, especially if you don’t have a faith background or spiritual formation to guide you. Without the support of people around you, encouraging you and reminding you every day of the value and purpose of your baby’s life, I understand how many women reach the painful conclusion to terminate their pregnancies. My heart breaks for them and their babies. I do not believe there is any escaping the grief of losing a child.

I am so thankful that God prepared me to embrace John Paul Raphael’s life. Not just spiritually and morally, but psychologically too. Two things that come to mind are from the work I have done in small groups with author Brene Brown’s material. The first is that you cannot “selectively numb”. What that means is that when we numb or reject our pain and our suffering, we also numb and reject our capacity for joy. Second, I took away from those courses and other spiritual formation this life-changing realization: I want to be courageous. My core values are honesty, faith and courage. I want to live a whole-hearted life. I want to be ALL IN. To do that, I need to live my values. I need to live honestly, faithfully, and courageously. I don’t want to get to the end of my life and have regrets. When I say regrets, I don’t mean wishing I had done whatever floats my boat. I mean regrets about sin and my integrity and my character and how I lived my life in line with the values I hold dearest. You can’t just turn off the pain in your life without also turning off your ability to feel joy and happiness to a deeper extent. So, if I want to live a whole-hearted life, I have to have the courage to open myself to the suffering that is in front of me. In doing so, I also open myself to the ability to find value, purpose, joy, meaning, and happiness through my suffering. Or in spite of it. Or maybe even because of it.

That is the framework and foundation that I was coming from when I found out that I was pregnant and that John Paul Raphael had a very, very likely chance of having Trisomy 18, which is always a life-limiting condition. As I think about these things, I know I went into my pregnancy confident that I wanted to have a whole-hearted, courageous, and faithful experience of my baby’s life. He is God’s baby. He is God’s story. He is a GIFT to us and I did not want to get in the way of that. That meant I had to open myself to the pain. But because I did that, I also really opened myself to the joy. And the hope and the purpose and the meaning. And the love. The love. THE LOVE. The JOY.

I want to give this hope to anyone who is in the position of having an unexpected pregnancy or a difficult prenatal diagnosis. Your baby will be enough.

It may be impossible to imagine right now. The obstacles or fears or challenges this pregnancy brings may seem enormous, insurmountable even. There may be no hope of a happy ending and only the promise of great hardship, pain, and suffering. It may not feel imaginable to change your life in order to welcome this baby. It may not seem possible or worth it to put your body through what it needs to go through in order to grow this child and allow his or her life to unfold in its natural way.

I know from holding my own perfectly imperfect son in my arms, though, that these littlest ones are pure love. They come so dewy from Heaven and they offer themselves as a gift of pure innocence and love – TRUSTING they will be loved and cared for in their helplessness. And they LOVE us too. Not just because they need us as mothers to give them the gift of life, but because we are their mommies and daddies. Their love to us comes in a wordless, effortless, intangible way, but it is powerful. If we are open to it, there is a transformation that occurs in this exchange of love. If we give all of ourselves and all of our hearts to our babies, our babies are enough. Whether they are born still or you get to number your time on Earth with them in minutes, months, or years, our babies and the love they bring and the love they inspire in us are enough to make it worth it.

Loving and grieving John Paul Raphael transforms me and expands me when I open my heart to his life and lean in to the lessons from his loss. Yes, there is pain. There is suffering. These are heavy and not to be underestimated, but they are less than the joy and the love and the hope for an eternity reunited with my sweet monkey. And I am more. I am MORE of the woman I am meant to be if I open myself to the love and the lessons that come from the life and death of my child. I am kinder, more compassionate, and more empathetic. I am gentler and more understanding and more willing to love because I know time is not guaranteed. And yes, I cry more too, but because my heart has stretched to hold this pain, it can swell and magnify the love and the joy. I am learning to surrender to the unknown and the uncontrollable – really all of life, right??? – and find the peace and freedom that comes from this.

The reality is that when we enter in to parenthood, there are no guarantees. We can’t help having hopes and dreams for our child. Some of us know before birth that our particular story is going to be different than we expected. Some of us can go 5, 10, 20 years before the path we imagined for our child is altered. It is always a risk to love our children, but the return is so worth it. Despite knowing the journey…and where it leads…I embrace it…and I welcome every moment of it.

Let yourself be loved. Let yourself love.

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Aug 28, 2018

We can all benefit from the wisdom you’ve been given the hard way. Nothing is wasted. Everything has purpose. Thank you for sharing your story.

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