In June of 2020, Liam was just a “late walker”. I had no idea what the difference was between a CT scan and an MRI (and to be honest, I still don’t.) I knew therapy would probably be in our future, but St. Louis Children’s hospital wouldn’t be. It couldn’t be. God willing, that wasn’t “us”.
I had no earthly idea what the word “glioma” meant or the difference between a neurologist, neurosurgeon, or neuro-oncologist (they are all different, believe me). I didn’t know the possibility of dysplasia in children or what it was. My medical knowledge was about what little I learned from watching House, M.D..
We were going to be normal. It was almost as if I was willing it into existence. Getting Liam here was hard enough (maybe that story for another day). Between pregnancy scares, my newfound medical issues, a 23-day early delivery, and 6 months of oversight with a hematologist, my baby was going to put all that behind and progress normally.
Until we didn’t.
We didn’t crawl at 9 or 10 months of age. He didn’t want to stand. He didn’t care to move around much.
12 months passed us by and we still weren’t moving. Doctors weren’t too concerned. The walking window was from 12 – 18 months.
15 months came. April 2020. We started to “scoot”, but not crawl. We didn’t care to put weight on our legs, but there was not much we as parents could do because we were in a world-wide pandemic.
After a visit to family in South Carolina in June and our family vacation, we started to see some regression. What little standing we could get Liam to do, he wouldn’t do any more. He just cried every time we tried.
So, I finally called the doctor. I thought I could get him to order some physical therapy for us. That’s all we needed, just a little help.
Until he told us some of this wasn’t normal.
Then started the tests. Tests for MS. Tests for Muscular Dystrophy. Everything came back negative. Great!
But that left us with more questions. So next on the list was a CT scan of the brain. Except Liam’s insurance wouldn’t do that. They wanted to do an MRI instead.
I knew about those and how they sometimes found things we didn’t want to know was there. I told my mom, “What if they find a brain tumor?” We knew that was a possibility, but we didn’t want to think it would become our reality.
On July 20 we went to St. Louis for Liam’s MRI. We headed home and a strange number called my phone. I answered, because that’s how hospitals and doctor’s office numbers come in. It was our pediatrician. He asked me if I was driving. I wasn’t. He told me they found a mass on the left back side of my son’s brain. I remember grabbing Gowdy’s hand while he drove, and my mom was with Liam in the back seat. I hung up and the tears came in droves, uncontrollably. My hope for normal was gone.
It was in those first few moments and hours that God taught me the biggest lesson of this journey. In hearing the absolute hardest news of my entire life, I knew that God was still good. As Gowdy and I began to process this information in our own ways, the one thing we came back to was that Liam would “be okay.” We didn’t know how or on which side of Heaven, but our son would be okay because God is good.
I’ve learned God’s goodness did not depend on the MRI results or my feelings. God is good because that is his nature. I studied this long ago in my philosophy class with Dr. Hester. I know this to be true cognitively, but through this experience I know it effectively. This truth, God’s goodness, is the Rock on which we stand throughout this journey that we are living with Liam.
Within 3 days of Liam’s first MRI, we found ourselves sitting in a neurosurgeon’s office in St. Louis. We spent almost a full hour talking to our surgeon and learning about this “mass” that was on our son’s brain. I remember having a tunnel vision like experience, furiously taking notes in my newly deemed “Liam” notebook and asking the questions that I could think of in that minute. Within that visit, we learned within a week, my precious 18 month old baby was going to undergo a “simple” surgery to biopsy this “mass” on his brain. It was in those moments that I had to come to grips with the terms “tumor” and “treatment” and learn to embrace the unpredictability that would become our future. This was another step away from this idea of normalcy that I had longed to have and cherished.
It was in these early days that the fear creeped in. It tried to find (and still tries) its way into my thoughts and my actions. And It is true the Bible mentions multiple times to “not fear”. My life verse even contains such a statement. But I’ve since learned my fear is a natural, human reaction to my events taking place.
I would be lying to you if I said I wasn’t afraid every time they took my child from me to put him under for a procedure. I’d be lying if I said I wasn’t afraid the morning they took him for his biopsy. I crumbled in those moments. I let the fear in, but I didn’t let myself live there. And, that, my friends, is no easy task. When the waves of fear surround me and try to over take me, I go back to the Rock I spoke of. I look up and climb back on. And if I can’t climb, I simply hold on for dear life, because I know that Rock will not be moved.
I wish I could tell you what we did for those 5 hours that Liam was away from us for surgery. I know I colored scripture pages in an adult coloring book. We watched a few episodes of my favorite TV show, Friends. I read my Bible. And I felt peace, a peace that surpassed all understanding.
Liam did beautifully during surgery and did amazingly well afterwards. We had neurological checks all throughout the night and our surgeon checked on us as well. We left within 24 hours of surgery to come home. Then came more waiting.
We knew we wouldn’t know much about what they found by 7-8 days. But those 7-8 days turned into 10 days. On day 10, I went back to work for the 2020-2021 school year, and Liam started day care. Day 10 turned into day 20. And day 20 turned into 2 months. Here we are, 8 months later, and we still don’t know what this mass on my son’s brain is. We’ve elected, at this point, to wait and watch with MRIs every 3 months for the first year. We’ve added a neuro-oncologist to the team and Liam’s case appears before the tumor board whenever his MRI’s come around.
Wherever I tell people our story or someone talks with me about it, I hear very often, “I don’t know how you do it.” I have one simple answer to give, “by the grace of God.” When we go for MRIs or when we went for surgery, the pandemic has limited our emotional support. Gowdy and I only have each other. It’s a miracle in and of itself that we both have been able to continue our daily lives and careers with minimal changes from this. Liam is also thriving in daycare and learning so much. When this all began, we had no idea what this first semester of school would look like for us. And the only answer can be “by the grace of God.”
Tenth Avenue North sings a song called “I Have This Hope.” There’s a line that says, “through the flood or the fire, You are with me and You won’t let go.” That’s a thought I’ve long held onto throughout this increasingly difficult journey. I saw a post a few months ago about the “fires” that each of us have experienced in this past year. The author talks about when Shadrach, Meshach, and Abednego were thrown into the fiery furnace. If you are unfamiliar with the story, Shadrach, Meshach, and Abednego were being thrown into the fire for disobeying the king’s order to bow down to his golden image. Scripture says that this fire in the furnace was so incredibly hot that the guards who carried them into the fire were killed from it.
Once these three men were thrown into the fire, King Nebuchadnezzar jumped and looked around asking “How many men did we throw in there? Because I don’t see 3, I see four!” He then called them out of the fire. And when they came out, not a hair on their heads were singed and their clothes didn’t even smell like smoke.
If you were a sixth grader in my reading class, there wouldn’t be a space in this story that wasn’t annotated. We would be writing all over the margins asking all types of questions. “How did they not die?” “What did they talk about in there?” And most importantly, “how did they come out alive without their clothes singed and didn’t smell at all like smoke?” Question marks would be everywhere.
Believe me, we have a lot of questions about this journey we are on. However, through this “fire” we are in, I’m slowly learning that some how, some way, we will come out on the other side and our clothes won’t even smell like smoke. For that, we are so grateful. To God be the glory.
“If You walked out of that grave, I’m walking too.”
- The Goodness of God When Your Child Has A Tumor - April 5, 2021
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