"Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”
1 Thessalonians 5:18
In November of 2017, I traveled with Ralph, Maggie, and Andrew to Scranton, Pennsylvania to celebrate Thanksgiving, against medical advice. I was 30 weeks pregnant with John Paul Raphael and my polyhydramnios had become more significant, increasing the risk of premature delivery. All my medical professionals recommended staying in town. They didn’t want us to have worked so hard to build a team of professionals for a high-risk delivery and then have me end up going in to labor in another state.
I needed to go anyway. I moved a lot as a child and in many ways Scranton felt like home. There had been so much stress in my life recently, so much pressure, so many appointments, so much worry… I wanted to go to where I spent holidays as a child and try to just wish it all away for a few days. Recapture a sense of innocence and pretend we weren’t staring death in the face.
However, as time marched forward, Ralph and I really needed to sit down and work through the rest of our birth plan. I had read many examples on line of parents in similar circumstances to ours, but I felt frozen when it came to putting it down on paper. How could we be sure exactly what procedures we wanted or didn’t want before John Paul Raphael was here? It took a lot of strength, grace, and prayer to work through that whole process. To acknowledge the dreams we had for our sweetest baby and let them touch the reality of his condition and what it might mean for his life. It felt like any decision needed to have contingency A, B, and C. Even being a seasoned parent, making these decisions for our little one felt like way too much responsibility. I so desperately wanted someone to just say what the “right” thing to do was, but only Ralph and I were given the grace by God to love and advocate for this child, so we must find the strength to do what must be done.
On the drive to Scranton, I sat in the middle row of the van with Maggie and stared at the blank screen of my computer, trying to put together these words about our wishes for our son’s life. It was a brutal exercise and I shed many tears, but it felt good to have a vision for John Paul Raphael’s birth and what we hoped for his life. I wanted to make this right for my sweet baby. I wanted the perfect birth plan to somehow make his survival more possible.
It was a beautiful Thanksgiving. I remember vividly how active John Paul Raphael was and how miserable I was feeling so big and swollen, but we had our baby with us. We were with our family. We still had hope. We still had possibility.
We traveled to Scranton for Thanksgiving again this year. It was a bittersweet holiday for me. I couldn’t stop thinking about last year. Still pregnant. Still hopeful. Still with my baby. My heart still in one piece. Thinking about that other me, that other woman/wife/mother, my heart cried: I want to go back. I want one more dinner feeling you kicking away in there. I want one more ultrasound to see your sweet belly. I want one more kiss.
I had been worried about this for weeks, our first real holiday without John Paul Raphael. What did I need? How would I feel? What would help me find more joy than grief or lighten the weight of sadness just a little bit? I didn’t know. I felt myself moving a little slower. Being a little quieter. Feeling brittle and broken for some period of time and then peaceful and calm. I worked very hard at just BEING and not trying to manage it. My good friend, Erin, so tragically further down this grief road than I, recently shared some beautiful and helpful advice with me for getting through grief: So this is what grief feels like today.
No pressure, no expectation, no judgment on myself. Just radical acceptance of my heart and this organic path of grief that is happening to me, unfolding in me. I wept when I read her words because they immediately felt so true, so needed. And they came from a heart of deep understanding. This is an unexpected and unpredictable journey. It feels dark and confusing and there are no clear paths to navigate. But her words give me permission to be gentle and kind to myself. To let myself be loved in this season. When I don’t know what I need. So this is what grief feels like today. So this is what the first next Thanksgiving feels like.
As we gathered for Thanksgiving Dinner, some 30 of us, I could feel my throat tightening with anxiety. The hum of the sadness intensified. I had blue blankie with me and I looked around the room at all these loved ones I hold so dear, this room where I have loved and ate and laughed for every one of my 47 years. My place at the table was the most-hallowed chair my grandfather left vacant with his passing. My grandmother by my side. How is it possible to hold such fullness and such emptiness at the same time? The beauty of the tablescape and the smell of the food. The napkin holders so lovingly personalized for each one of us. "Thankful for Betsy” “Thankful for Ralph.” I felt the painful absence of one tiny napkin holder – I am thankful for you, John Paul Raphael, I whispered in my heart.
Ralph was on the other side of the room and was asked to say grace for the whole family. In that moment my heart leaped because instantly I knew what I needed, what would help – Ralph would offer a blessing and then he would say some beautiful words about family and those we love who we are not with today and the poignant absence of Papa and our baby and many others we miss for one reason or another; he would speak briefly of true gratitude for the gift of our little boy’s life and end by saying, “John Paul Raphael, pray for us!” like we always do. In this small way, I would feel the presence of my baby and share him with my family.
Except he didn’t. None of it. He read a lovely poem by Robert Louis Stevenson and then said God bless the chefs. And my heart broke and the tears poured. I was so devastated, so so so disappointed. Grief came surging out of me and I felt so alone. How could he have forgotten John Paul? How did he not know I needed to hear his name? Why didn’t he also need it and think it was important? I fell into self-pity here. Why did my son have to die? Am I the only one who remembers him? Why is this so hard still? When will I ever feel better?
The rest of dinner was so painful. Ralph saw my tears and rushed over. I desperately didn’t want to hurt him by sharing my disappointment, but I had to tell him. It would be impossible to hide it. “I needed you to talk about him,” I sobbed. “I needed you to say his name. I am so heart-broken that you didn’t even say his name.”
I have no doubt that the heart of my dearest husband also broke again when he felt my disappointment that he let me down. I didn’t blame him, I wasn’t angry… It is totally on me that I didn’t share more of my feelings of what might help me at this first holiday, when in fact I didn’t even KNOW what I needed so I had no way to tell him. But this was still such a double-heartbreak, for my son and from my husband. My same friend Erin wrote in her own blog about radical acceptance – this need for bereaved parents to RADICALLY accept the grief that the other is experiencing, or NOT experiencing. We have to supernaturally accept and love each other while we walk this most painful of walks together and alone. That moment at the dinner table required radical acceptance from me. I had to give Ralph total grace to be feeling what he was feeling while still accepting that I needed something totally different. This is not an easy place to be when it is a holiday and emotions are high anyway and you are navigating the “first-everything-without-your-baby” still.
It took some more tears, some beautiful hugs from a few dear family members, a lot of prayer, and a little more time before the rawness of that disappointment could fade and I could forgive him for just being human and doing the best he can, like the rest of us. We both know we need to slow down and be more aware of these special opportunities for connection with John Paul Raphael. We are still learning so much about love and loss. We are already talking about what we might need for Christmas and the upcoming anniversary of John Paul Raphael's birth and death.
I come again to a word I learned many years ago – Eucharisteo. Thanksgiving. I read about it first in 1000 Gifts: A Dare to Live Fully Alive by Ann Voskamp. She talks not just about giving beautiful thanksgiving for all our beautiful blessings, but the hard, brutal thanksgiving. The thanksgiving we surrender to with blood, sweat and tears because we know we HAVE to, but maybe we don’t really feel it, but we still accept it is the only way.
Eucharisteo is really about who God is and who we are. It is a wild act of faith – saying thank you for the pain. The suffering. It proclaims God is sovereign but still suffers with us. It affirms I am His beloved daughter and He is always near. I believe this in faith and from the scriptures. So, I will boldly and wildly (sometimes sobbing sometimes laughing or screaming or shaking) say thank you for all of it. Eucharisteo. Thanksgiving. Christ with us. Always. In everything. Believing that he is loving me in this sorrow and in this loss. That somehow I am more the woman I need to be through this suffering.
Eucharisteo changes my perspective. It burns and hurts and bleeds, but to say thank you is our “duty and our salvation” as we hear in the Mass. How much joy do we bring to the Lord when our faith is exercised in this way? Without thanksgiving, we shrivel, we become hard-hearted and carry clenched fists, holding life in our own way, not releasing and surrendering ourselves to the plan He has, trusting that even if we are scarred, that we will then look more like Him.
1 Thessalonians 5:18 says, “Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” I remember now how much I have to practice this. I have re-learn it. In order to give thanks at all times, I have to give thanks RIGHT NOW. In this moment. Even if it is a bad one. Even if I am sad. Because "All times” can’t be later. It has to be NOW.
What can you give thanks for right now? In this moment? Let it fill your heart. Let it slow you down. If there is one lesson I have learned from grief, it is that I was always moving too fast. I love slowness now. Giving myself time. Living with margin. Giving myself space to be and breathe.
I find God in this present moment. Let Him love me. Heal me. Bring my son to me in the depths of my heart.
So this is what grief looks like today.
Eucharisteo.
Let yourself be loved.
Voskamp, Ann. 1000 Gifts: Dare to Live Fully Alive. Zondervan: 2014.
.
Our Birth Plan
Our beloved son’s name is John Paul Raphael Leon. We are his parents, Betsy and Ralph Leon, and we have been praying and preparing for this day for many months. John Paul Raphael will be our 10th child -- but our first baby together. It is an unbelievably special and holy day for us. Every step of this journey has been God’s plan and we surrender to how John Paul Raphael’s birth and life may unfold in His loving care. Thank you for your expertise in helping us welcome him to our family with love and dignity. We cannot wait to share our love with him face to face.
We understand that our delivery may have extra challenges as we anticipate a diagnosis of Trisomy 18. We are as prepared as we can be to face the possible complications his delivery and life may bring. Thank you for reading through these details to familiarize yourself with our goals and decisions. We understand that events may unfold in a way that we cannot anticipate, and we trust our delivery and neonatal team to help us with any additional real-time decisions that we may need to make for John Paul Raphael’s care.
Our number one priority is for John Paul Raphael to be born alive and for him to spend as much time in our arms, knowing that his life may be very brief. We wish for all possible procedures to be done in our presence, or delayed until his condition is assessed (to see if he is stable) so that we don’t lose precious minutes with him immediately after delivery.