"Commit your way to the Lord; trust in Him and He will act." Psalm 37:5 Our journey through Trisomy 18 with John Paul Raphael was ultimately an act of surrender. How could I live every day with this uncertainty -- PAINFUL uncertainty?
Much of our lives are lived under the illusion of control. We make great efforts to plan and strategize in order to maximize comfort and safety and minimize fear or danger. We may have a relationship with God and pray for His guidance or blessing, but we might still secretly believe that it is our good deeds or our lack of bad deeds or our own efforts which will in some way affect the outcome. If I am a good person and try to do the right things and pray and believe in God, I “should” be blessed. Maybe I believe that any past sufferings were enough already and God wouldn’t “punish” me again. Either way, we are still bowing to the idol of self-reliance: I have the ability to control the outcome of my life.
Many people are able to live a long time without having the veil ripped off this illusion, without confronting the truth that we are mostly powerless. Yes, there are things we can do to shift the odds or lower our chances of certain hardships, but there is so much we can never see coming: The cancer diagnosis. The unfaithful husband. The freak accident. The job loss. The unwelcome prenatal diagnosis. When life as we know it changes, maybe in an instant, we are plunged into the unwelcome territory of uncertainty and suffering.
“What’s going to happen?” I don’t know.
“What can I do?” Nothing.
“How can I fix this?” You can’t.
“How will this end?” We just have to wait and see.
We fight this uncertainty with all our being. We search for answers, grasp at solutions, cling to anything that will reassure us that YES, there is something here I can DO to change the course of this event, because if I don’t, then my worst fears may come true.
I know a little bit about my worst fears coming true. My parents divorced when I was 12 and for many years, this event and the life changes that came with it were the worst things that had ever happened to me. I vowed as a young adult to NEVER be divorced. I would do anything I could to protect my own children from the pain, abandonment, and suffering that I went through. Then, after 15 years of marriage, my first husband told me he didn’t love me anymore and maybe never really did. He left for another woman and another life, leaving 6 shattered hearts behind him. I never saw it coming. Seven years later, my own heart has healed for the most part, but living through the wreckage with my children was and is agonizing. I spent years before and after the divorce trying to change, convince, or influence their dad to prioritize them in a different way, but ultimately could do nothing but surrender to life as it unfolded, relying on healthy boundaries and some good court documents to support me.
Powerless is such a painful place to be. From the moment we were given John Paul Raphael’s possible diagnosis of Trisomy 18, we entered this land of uncertainty. We loved our baby with all our being but had NO ability to control the outcome of his life. We chose not to confirm the diagnosis through amniocentesis not just because it risked his security in the womb, but also because it wouldn’t answer the real questions that burned in my heart. Would it tell us if he had Trisomy 18 for sure? Yes. But it couldn't answer: Will my baby be born alive? How long will he live? How will it feel to have my baby die in my arms? How will we ever go on??????? These deeper questions filled the space under my need to KNOW for sure. Only time could answer them and we were forced to live in a raw, unprotected reality where my worst fears could come true – again -- at any moment.
We have also felt powerless as we accompanied our daughter through her struggles with mental illness during these same 12 months we carried and mourned John Paul Raphael. From her admission to a mental hospital last May through the revelations of cutting and bulimia and panic attacks and medication management -- in many ways the last year has felt like a struggle to keep John Paul Raphael AND Leah alive. Teenage suicide can be a devastating, shocking outcome of deep inner pain in a child. We have worked tirelessly to get Leah every bit of help available, but at the end of it all there is a harsh truth I have had to learn. I cannot keep my daughter alive. No amount of hard work, striving, or monitoring on my part could keep her from finding a way if that was her will. All I can do is love her, sacrifice for her, keep showing up for her, and pray it is enough. Brutal uncertainty.
I cannot minimize the pain that surrounded us in this journey. It left me breathless and panicked some days, unable to get out of bed, grasping for solutions or a way to escape. But a light slowly dawned and I remembered something from the years of my divorce -- something incredibly beautiful that was happening again. As we surrendered to God’s plan and abandoned ourselves to this journey (I mean, really, what other choice did we have?), we begged the Lord for hope, comfort, faith, and TRUST. He showed up. His presence, His hope, His love carried us in His arms when there was no other way to get through the day.
I have learned there is an INTENSITY to my faith when I am at my lowest and most desperate and broken. When all the shields are down and I can no longer pretend in ANY WAY that I can do anything to change or fix this situation, I am like a little child. Let the little children come to me, the Lord tells us. When I get my own agenda out of the way – the noisy, insistent plans that I cannot possibly change and must do anything to achieve, my fears for what may or may not happen to me or to my family – when we come to the end of ourselves and our very best efforts, we can be found. Our hearts are exposed and surrendered in a way that allows the Lord to just pour in. If we are open to His grace, we can be filled to overflowing by this total abandonment to Divine Providence, and we are changed. I found true freedom when my own worst fears came true and I survived -- and not just survived, but increased somehow. I have become something more than I was before.
I am loving this new book by Kate Bowler (who I want to be my new very best friend) called Everything Happens for a Reason and Other Lies I Have Loved. In the wake of her stage IV colon cancer diagnosis as a young wife and mother, Kate writes so beautifully on page 121:
At a time when I should have felt abandoned by God, I was not reduced to ashes. I felt like I was floating, floating on the love and prayers of all those who hummed around me like worker bees… They came in like priests and mirrored back to me the face of Jesus. When they sat beside me, my hand in their hands, my own suffering began to feel like it had revealed to me the suffering of others, a world of those who, like me, are stumbling in the debris of dreams they thought they were entitled to and plans they didn’t realize they had made.1
Journeying with those of us who are suffering, for whatever reason, can pose a challenge for others. Our bare, naked emotion removes the veil that allows the people around us to convince themselves that tragedy will not come their way. And I DON’T wish tragedy or suffering on anyone. But I am grateful, so grateful, for the IMPRINT of His own heart that the Lord has left on us in our pain. We are not alone. We are held in and through it. I am so completely His beloved daughter. As I have learned to stop thrashing and fighting the ways that life is not turning out as I thought it would, I am learning to be a better version of myself: kinder, softer, more loving, more compassionate, more gentle. More understanding and available to other people in their pain. More generous in praying for and serving others. I am learning to let myself be LOVED.
I leave you with this encouragement from Pope Francis to not be afraid – of uncertainty, of tragedy, or that which we cannot control. If we run INTO it, and not from it, the realization of our greatest fears can be an opportunity to be delivered into freedom.
Do not be afraid to set your sights higher, to allow yourself to be loved and liberated by God. Do not be afraid to let yourself be guided by the Holy Spirit. Holiness does not make you less human, since it is an encounter between your weakness and the power of God’s grace. For in the words of León Bloy, when all is said and done, “the only great tragedy in life, is not to become a saint.”2
1. Bowler, Kate. Everything Happens for a Reason and Other Lies I Have Loved. Random House, 2018.
2. Pope Francis. “On the Call to Holiness in Today’s World.” Vatican: The Holy See. Rome, 19 March 2018. Paragraph 34.
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