The day my daughter lost her eye, I lost a part of myself — but I also gained something new.
It’s been a while since my last post and so much has changed since then. On Wednesday, October 20, 2021 I got the kids ready for school and we rode up to the bus stop. My husband Jeff and our youngest baby were hours away at St. Jude Children’s Research Hospital, and my firstborn son was spending three days without us. He was going off on his first camping trip with his fifth-grade class.
I watched as he carried his duffel bag and waved at me with the biggest smile. My stomach clenched, my baby boy was on the cusp of becoming a young man.
By the time I made it to drop my son off at preschool my stomach was in knots. At any given moment my baby girl would be going back to the operating room for her eye exam under anesthesia to make sure everything looked good. Just a few weeks ago I noticed her vision was declining in her right eye when I’d patch her left one.
Her doctor said it was from so much inflammation, so I was certain it would be treatable — and I couldn’t have been more wrong.
The waiting and silence were enough to send me over the edge. I couldn’t be still as if I was at the edge of my own sanity. I did everything I could to keep my mind active. Time crept by and eventually, Jeff sent me a text saying,”She’s in the back now.” That’s when I hit my knees in prayer and then I waited some more. I waited and prayed for the best, but I couldn’t have known the news we were about to receive.
It Has to Come Out
I wrote this update on Facebook sharing the news;
When the tumor regressed and caused bleeding, the bleeding carried viable cells with it. She has more tumors now behind the eye and enucleation would be the safest option at this point. I sat on speakerphone frozen listening to the doctor. He mentioned chemo again. Yet I could tell he wasn’t very hopeful since she no longer had vision and that he wasn’t sure he could get all three of the tumors. I asked if they can test her vision first as if trying desperately to fight the inevitable. In my heart, I knew it was time, and things were now too risky.
Her eye has to come out.
The sunlight shamelessly made its way into my room. Its rays spilled across my desk and were so bright it caused me to squint. I slid down on the floor, feeling sick to my stomach yet captivated by the light. We didn’t get the news we wanted, and I am devastated. Why? Why couldn’t her story be different? We have fought so long and so hard, it feels like we are throwing in the towel.
How is this happening?
I am angry now at how unfair life can be. I need to see her two perfectly beautiful brown eyes before they take one. Cancer has robbed us of so much. Everything feels so dark right now. She has been through so much and fought battles no child should have to fight.
My heart feels like it’s shattered into a million pieces, and somehow the light still finds its way in.
That afternoon a friend from work immediately said she was bringing dinner for us. That’s when I was pulled back to reality that the kids still needed me, and that life doesn’t pause not even for a broken heart. That evening friends came over to check on me and I will never forget the moment I came undone on the couch.
A family friend of ours held me and I broke down right there on her shoulder. She didn’t offer any cliche quotes or opinions she simply offered her presence and it was more than enough. She then said, “I will watch the kids you need to be there.” I paused for a moment as if trying to process what she just said. Would I be able to handle the six-hour drive in my current state?
Would I be able to handle the surgery? I didn’t think I could and I immediately told her no. But she looked me in the eyes and said, “You can handle it and you are going to want to be there!” And she was more than right.
Before The Enucleation
The surgery was scheduled for the following Wednesday. I picked my son up Friday as he spilled out all the adventures packed in the past few days. My birthday was that Saturday and my brother and his girlfriend came down to show support. My youngest son turned 5 the following day, and I did all I could to keep a smile on my face and to hold it together, but there was no hiding I was so broken.
Monday, I stopped at the store once the kids were all at school. I manically organized things around the house and chopped up fruit for the week.
I tried to do everything I could to prolong the reality that it was past time to start driving. Once I was on the road the clouds rolled in and the sky opened up bursting out the rainfall. I slowed down as my wipers barely kept pace with the heavy onslaught. If that was not a metaphor for my pain I don’t know what was. For a while, The drive was long and so different. For once I didn’t have Sariyah in the backseat laughing and talking. I felt so alone and broken.
Six hours later I arrived in Memphis and approached the gates to St. Jude. I told Jeff that I was there and he wanted to surprise Sariyah. With a sudden burst of energy I pulled my suitcase through the hotel and up to the floor they were on. He left the door cracked for me and when I came in I heard her squeal. She didn’t see me at first because they were in a suit and she was on the other side. But the moment her eyes met mine her face lit up and she ran to me. I picked her up and held her so close through tears I looked at her beautiful brown eyes and said, “Mama’s here.”
The following day was a blur of appointments, paperwork, and details for the surgery that following day. A friend I met on campus kindly volunteered to take some photos for us. That was the one thing I wanted was photos of the three of us before cancer took her eye away.
That evening we went out to eat per my husband. If it weren’t for him I would’ve moped around in the hotel, but he insisted on taking us out. I didn’t have much of an appetite but it was special just the three of us in the middle of Olive Garden.
The Day of the Enucleation
Wednesday came and I woke up with a deep sense of dread that seemed to settle into my bones. I knew this surgery was for the best but it didn’t make it hurt any less. Once we made our way to the surgery floor we were sent to wait in the lobby for a while. Child life met us in there and explained with dolls to Sariyah what was about to happen.
Once we were called back I felt like I was going to be sick. We made our way to the room we have been in countless times before. Yet this time was so different. The lump caught in my throat felt as if I swallowed I would surely choke.
I watched the clock and the way my baby’s brown eyes met mine. I wanted so desperately to take her and run far away. People were in and out with papers to sign and eye drops every so often. I had no strength left and helplessly watched as my Jeff helped hold her down to apply the drops. With each drop spilling down her cheek tears spilled down my face.
It felt like I was sitting there watching someone else’s life. Her doctor came in with a marker and spoke to us as he confirmed it was her right eye with a quick mark above her brow. I can’t tell you why but that mark sent me into a downward spiral of emotions. Watching her innocently playing and seeing the mark that she had no clue was for, was too much.
Jeff was anxious I could tell as he fiddled around and then put his head down.
We both were so very broken, and so devastated. When the time came to go in the back I suddenly forgot how to get the surgical gear on. I fumbled with the shoe covers and Jeff had to help me. Once I was carrying her to the back I was certain my legs would give out at any moment.
The OR was as bright as usual but something felt off-putting. Perhaps it was all the foreign tools neatly placed near the table, or that my heartfelt as if were bound tightly with a thousand rubber bands. They injected the anesthesia into her IV and suddenly I felt weak. I held her closely looking into her two beautiful brown eyes. Then I watched her eyes close and felt her body go limp. I laid her down and pulled my mask down to kiss her.
A woman walked me out, I was crying uncontrollably and she held my arm and said a prayer. I don’t remember what she said but I remember thinking that God always finds a way to speak to us when we need Him the most. Her words were like honey to my soul as I made my way back to Jeff and broke down in his arms. His eyes were red and teary. He’d been crying I could tell. We sat there in the waiting room as our baby girl was in the back having her eye removed, and I prayed with all that I had left that the cancer would be gone.
A New Vision
The saying goes that when you give birth, you too are born again. You unearth new things about yourself as well as gain a fresh perspective on the world around you. But what about the day something traumatic like cancer strikes?
A sudden, unexpected awakening forces you to confront, feel, and acknowledge the deepest parts of yourself, much like when giving birth. As you come to grips with the harsh reality of your situation, it becomes clear that the control you thought you had was only an illusion. Life as you once knew it shatters into a thousand tiny fragments.
Either you can attempt to pick up all the pieces of what was, or you can learn to live alongside the brokenness and hurt.
All five of my children have taught me how to live in unison with the pain and to not let it hold me back but instead propel me forward. I have watched Sariyah shamelessly dance in the darkest of valleys and fear no evil.
In many ways, I feel like I have failed her, but maybe the only thing I’ve failed is to remember her strength and that nothing holds her down.
In just a few hours post enucleation she was up dancing and laughing.
We still have her here, and she still has every ounce of your spunk. I can tell you the exact moment I knew she lost all vision in that eye. Yet you adapted so effortlessly. She still managed to stop and notice the small rocks hidden around campus. And surely if she can still stop to notice the small things then surely I can too.
The morning after surgery we went over to the hospital to have her pressure bandage removed and to get the clearance to go home. It was dress-up week and the theme for the day was superheroes. Registration gave us a little silky pink cape and mask. I watched Sariyah stretch her arms out and run through the hospital pretending to fly. It was a vision of freedom and a fresh start.
Although she lost her right eye, I now have the clearest vision of faith, love, family, community, and strength. The more I think about it, I’d say we’ve gained far more than we’ve lost.
Erin K. says
Beautiful, friend. You’ve all been through so much. I am thankful that you can find things that are good. Praying 2022 is a good year for you all!
Your story is so amazing. You are so right about stopping to see the small things. God has big plans for your future. Keep sharing your story to help other families.
Kristina M says
So proud to call you a friend. What a beautiful testimony that baby has- and you! I love you all SO much!
Thank you for sharing your story. She has such a powerful testimony, as do you!