It wasn’t the actual diagnosis or procedure that made my heart sink. After all, we truly had no choice.
We were standing in a tiny waiting room, more than seven of my family members crammed so close we could guess what toothpaste someone had used that morning. For a family of writers, teachers, doctors and preachers who make a living talking, speaking, and educating, we were speechless.
Just 24 hours prior to that moment, we were driving in our car to Boston to see a pediatric eye specialist to find out why our 2-year old daughter had a eye that didn’t seem to move properly. We read about “lazy eye” and how patching the eye would build the muscle and make it stronger. I recalled my own childhood memories of glasses, being called “Four Eyes”, and the ultimate benefit of having an ophthalmologist for a Dad — free contact lenses starting as soon as I could put them in myself. In my case, that was 4th grade. I had contact lenses before I even had my first bra.
Just an hour before her scheduled surgery to remove her right eye and, if needed, remove her left eye, we were gathered in the waiting room of Mass Eye and Ear. My brother had flown in from Hawaii in record time, arriving just moments after Joli went into surgery. My sister and my other brother arrived as soon as they heard the news. My sister, Mari, who just a year later would discover she had breast cancer and find herself in the adjacent hospital, was unable to be with us because she had just given birth to her first child in California. My mom was there with her rosary. My in-laws were there from New York. I was packing some serious distraction: the latest Harry Potter book. I remember thinking, “I could use a little fantasy and magic today, so this works just fine.”
My father, the ophthalmologist, was absent.
No one blamed him.
No one blamed him for not diagnosing Joli’s retinoblastoma, though he held the medical knowledge to do so.
No one blamed him for crying the night before the surgery in the hallway of my tiny home. Though my father had experienced the death of both of his parents, the tragic passing of some of his siblings (mostly due to cancer), and many of life’s challenges, this was the first time I had ever seen my father cry.
No one blamed him when he kept telling me to “stop taking pictures of her!” as I hid behind my camera lens and caught photos of her tumor taunting me. These would be the only photos of her visible tumor that we have.
No one blamed him for not being there in the hospital in which, just thirty years early, he had completed his medical internship in glaucoma and cataracts.
We didn’t need to blame him; He blamed himself.
I don’t remember much about that day, and I certainly don’t remember my dad calling to check in on Joli. I’m sure he did, though. I imagine my dad in his office, seeing patients and diagnosing a range of problems: nearsightedness, high eye pressure, farsightedness, a piece of sand caught under the eyelid from workman’s day on the job, cataracts and cloudy vision. But, he must have been thinking, “How am I diagnosing patients every 15 minutes, yet I couldn’t diagnose my own granddaughter.”
Maybe he didn’t call. I really can’t remember. Truth is, I’ve never blamed him.
Back at Mass Eye and Ear, the pre-surgical dance had us entering into different rooms for a dozen pre-op procedures: checking Jo’s weight, putting a eye drops to numb and dilate her pupils, check her blood pressure, answering questions from different medical students learning about her rare diagnosis. We then waltzed into another room where we spoke with the anesthesiologist about the many ways in which one could die from complications in surgery.
Six years later, I’m having trouble recalling the details of the day. And, that’s exactly how it should be, right? The further we get away from that day, the harder it will be to recall the process of that day. I simply remember much of it because our lives followed a similar pattern every three months when all three children were having eye exams under anesthesia.
Though the actual moments and memories are beginning to fade, and life is less about surviving from day-to-day, there are three distinct moments I will never forget:
1. After Joli’s eye drops had taken effect, I brought her to the large window on the upper floor of Mass Eye and Ear to look out onto the river. “Look, Joli! Look at those beautiful boats!” I said to her. In her tiny toddler voice, she whispered, “Mom, I can’t see any boats. I can’t see anything at all.”
We didn’t yet know if Joli would come out of surgery having removed only one eye, or having removed both eyes. It was at that moment that I realized her words just might foreshadow the surgeon’s procedure.
2. The second moment that has etched its way into my being is when the doctor came out to visit us at the conclusion of the surgery. “We had to remove her right eye. We were able to leave the left one alone.” Both joy and sadness swirled through my veins.
3. Finally, I was able to visit Joli in the recovery room shortly after her surgery. As I approached the open space filled with children in beds, I knew which one was mine. My child was the one with an dramatically over sized compression bandage that looked like it belonged on a Broadway stage. I took a deep breath, walked towards her bed, and prayed she wasn’t in pain.
As Joli began to slowly emerge from anesthesia, I asked the nurse what I was supposed to do. Should I touch her? Can I hold her hand? Will I hurt her?
It was at that moment that Joli opened her one eye, and at age 2, she whispered to me, “Thank you, Mommy.”
We stayed in the recovery room until the anesthesia diminished its hold on her 24 pound body. Still connected to her IV, Joli sat up in her bed as one of the medical transporters wheeled her up to see the rest of the family in the waiting area. As we were leaving the floor, Joli turned to the nursing staff, raised her tiny arm covered in Tergadem used to hold her IV in place, and said, “Thank you, everybody” and waved.
I knew we would be fine. Hearing Joli’s voice was exactly what I needed to feel that we would be alright. Hearing her thank me, thank the people who cared for her, and show gratitude in the face of adversity, changed my own life forever. If my 2-year old child could be positive and strong, then why can’t I? That moment, it wasn’t cancer that changed our lives, it was her voice. From the moment I heard her voice — just a whisper at first, then a declaration to the entire floor — my life changed. She is why I could make it through the past few years.
I think of Joli every mile of my run. I thought of her when I was too scared to go into surgery. I thought of her as I lay in pain — the ache of stabbing just under my skin that was stretched over my swollen chest. I think of her when I feel I can’t take another step.
After her surgery, we celebrated each August 17th as her ‘cancerversary’. It was the day she was diagnosed. Interesting fact is that August 17th was her original due date. Joli was born at 36 weeks — on July 17th — but her due date was August 17th. It was the day our lives had meaning, our souls had definition, and our family had purpose. It was the day when everyone realized there was more to life than stuff, and the only thing that mattered was that realization. It was the anticipated day of her birth, but August 17th was the day our family became truly alive.
I refuse to work on August 17th. It’s a reminder that there is nothing more important than family, particularly on that day. But, for two years, Joli has spent August 17th away from home. She has spent it with her grandparents at a camp where kids get to learn about love, God, and friendship. At first, this was hard for me to let her go. This year, it has been equally as hard. I’ve wanted to do nothing more than hold onto Joli, keep her next to me, kiss her, hug her, and tell her that I love her endlessly. But, she is 4 hours away, and having the time of her life swimming, playing, meeting new friends, learning new games, and trying all sorts of new things. Both sadness and joy swirl through my veins.
And, at 8:41pm, she called.
“Hi, Mom,” she whispered. “Everything is fine. I just wanted to hear your voice.”
Peace, love, and the power of words,