Have you ever felt a tug on your heart and emotions, feeling a sense of grief creeping in that you just can’t explain? Then, when you look at a calendar, you realize that it marked a time of great loss in your life? I had that same experience while walking up 33rd Avenue in Manhattan this past week, as Johanna was in NYU hospital recovering from a recent surgery.
I left the hospital to take a walk, to clear my head and feel the crisp fall air hit my face. Johanna was resting in the PICU, but not comfortably. We were all concerned about the pain in her head and watching the intricate system which monitored the pressure in her brain, hoping the new shunt would work well and give us all some reprieve.
As I walked, I became aware of this grief tugging at the my consciousness. It was like someone or something was knocking at the door of my mind, requesting to be acknowledged. At first, I couldn’t put my finger on it. It was a familiar, bittersweet feeling. Then I felt this contradictory feeling in my body; the breeze cold and biting, as the sun warmed my face. I realized the irony of our situation, as I recalled that this week marked the beginning of our journey. Seventeen years ago, my baby was diagnosed with a brain tumor and had her first two brain surgeries.
When our family was younger, we would mark this week with some kind of special activity. We went to Mass, and took the kids on a special day trip to a park or out to lunch. We tried to spend some time and discussion focusing on how our lives were changed for the better since Johanna’s diagnosis. We took the time to acknowledge the bittersweet grief which ran beneath the surface of our lives as individuals and as a family. We talked and prayed, laughed and cried, recalling the blessings and the pain of this unseen grief. However, as the years progressed and the life and death struggles continued, that initial experience of bittersweet grief was swallowed up in the blessings and the pains of raising a family with a child with special needs. This year, I felt I needed to acknowledge it, not only for myself, but for my husband and our young adult children.
For better or for worse, our family stays connected through texting and social media. Though there is something lost, there is also something gained through the ease of this mode. Group texts and emoticons, while limited in conveying true human emotions, can serve to initiate a conversation. I sent a group text to my family and I reminded them that this was the week which began our journey and I suggested, that although we were separated by distance, we could unite in prayer. Steve, David and Anna were able to attend daily Mass together at home. MaryAngela shared her grief and Jo’s story with her college friends. I was with Johanna, marking the anniversary with another brain surgery and a weeklong stay in the PICU. I went to Mass at the beautiful chapel on 33rd Street and then posted pictures and a video to Facebook recounting our family’s journey of hope.
We each in our own way expressed our unseen grief and hope, and the treasure we hold in earthen vessels. I have often shared the scripture the Lord gave me when Johanna was first diagnosed. It is from 2 Corinthians 4:7f. I am grateful God spoke into our struggle and began to open for us the mystery of this life and the fragile nature of “treasures in earthen vessels.”
We have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves… Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
Over the years, I have learned that unseen mysteries and the power of God lie beneath the joys and struggles of every human person. Seventeen years ago, only one other human being heard me cry, “I choose the path of miracles” in the dark room of the PICU: my daughter Johanna. Though she could but smile and coo, I believe she too absorbed the unseen power of God, hidden in my proclamation of faith. Somewhere in her tiny mind and heart, she said yes to the path of miracles we have walked together and from this strength she is an inspiration to everyone she meets.
The interesting thing about my daughter is that people don’t always realize upfront that she is disabled. It is hard to tell that she doesn’t read, write and comprehend many things because of brain injuries. She has a great sense of humor and is so social that she initially fools most people. Her strongest gift is her intuition. She has a sense of the unseen; of grief and pain, love and the power of God. She has insights into people and situations that escape even the well-trained eye. She picks out the person in the room who most needs a hug and a laugh and sees to it that they get one. One time we were leaving a dance, and she asked me if she could stay and speak with the DJ and tell the person her story. The DJ filled up with tears and told us that she was just diagnosed with cancer and was scared to death. Now Johanna inspired her to hope.
A few days ago, I was lying next to Johanna in her hospital bed. She was struggling and lethargic and it seemed like her mental status was changing because of pressure in her brain. As I was trying to comfort her, she began staring at the ceiling and pointing upwards saying she wanted to go there. When I asked her what she saw she said it was stairs. I was not happy. I called the doctors and they altered her medications. They called this hallucinations, but Jo remembers every detail.
This brief experience reminded me to live each day acknowledging “things unseen.” Whether it is to patiently see beneath the surface of someone’s cry for comfort and strength or to prepare for the death of a loved one, it is important to look beyond what is seen and acknowledge the unseen mysteries of life and the power of God.
The next time you feel that call to acknowledge the things unseen, take the time to look and listen. You may uncover the hidden treasures we hold in earthen vessels and discover the unseen power of God.
Eileen Benthal has a B.A. in theology from Franciscan University of Steubenville. She is a writer, speaker and wellness coach at 40DaysToFocus.com and NOFO Wellness Center. She works with clients locally and around the U.S. who are excited about balancing their health in body, mind and spirit.
Eileen and her husband Steve live in Jamesport and have four young adult children. Their youngest, 16-year-old Johanna, is a teenager with special needs. Eileen can be reached at firstname.lastname@example.org andfacebook.com/40DaysToFocus.