Late effects of brain surgery-a topic that has been weighing heavily on my brain and heart these days. In recent weeks, we’ve watched Anthony struggle in his daily life. This is obviously something to be expected for a child survivor, but it’s something that we haven’t truly been educated on as caretakers and parents of one. I have come to the conclusion that our lack of education is probably one of the reasons I have been struggling deeply with these obstacles. Lack of education combined with the emotions I feel as I watch the sweetest soul I’ve ever met experience frustration, pain, disappointment, and the feeling of defeat.
While writing has always been my therapy, my way to release some extremely difficult feelings that have been weighing heavily on my own brain, it’s something I simply haven’t been doing. Now that I write for a living, I find it hard to gather my thoughts into anything worth reading at the end of the day. My brain has been like jelly. And all these experiences, feelings, emotions I have experienced in the last few months have become suppressed in my mind. I’m not sure how your brain works, but the more I suppress my thoughts and feelings, the more overloaded my brain becomes and my mind simple shuts down. It becomes vague, distracted, blank. And when that happens I’m no good to anyone or anything.
Thanks to a conversation with my husband and some great personal development podcasts, I’ve gathered up the courage-and the words-to release these feelings. And thanks to Anthony and some great, supportive friends, I’m able to use them for a purpose. My writing helping others in the brain tumor community and beyond to become more educated about this journey that sometimes completely consumes me. What do you do when the person closest to you struggles deeply? How do you carry on or find a resolution when the future of the person you love most in the world is undefined? In the eyes of a three-year-old, the answer is simple. You climb mountains. This is my first step.
Late effects of brain surgery can come out of nowhere. There is no truly defined path that people who go through this journey can expect to navigate. It’s understandable to me. The brain is a complicated organ. In fact, the brain is the most complex organ in our entire body. It’s the source of the qualities that make you-YOU! It’s the command center for our daily living-movements, judgment, reward, memory, vision, sensations, coordination, speech-you get the point. It is constantly active. Even when we are sleeping, our brain is working. It is truly the most remarkable organ in our bodies. So complex, in fact, that after years of research, there is still so much we don’t know about the brain.
Parenting a survivor is also complex. I often talk about balance. Balance between discipline and understanding. Balance between expectations and accommodations. It is damn hard. And lately it’s getting harder. Because just as I fell into a comfortable, confident balance, things changed. Drastically. Looking back, it seems like common sense. As Anthony’s brain grows and is able to engage in more complicated learning, thoughts, and actions, the late effects of brain surgery begin to emerge. Absolute common sense when you think about it. But I didn’t think about it. And we weren’t educated on it. We weren’t told or taught to expect this. So as common sense as it seems, it has hit me like a freight train. And, I’ve struggled with how to handle it.
The idea of ‘Mama Bear’ is a common reference in the world of parenting. Everywhere I turn I see ‘Mama Bear’ t-shirts, sweatpants, mugs, and people referring to themselves or some other strong mother as ‘Mama Bear.’ I can tell you first hand that the analogy of human mothers to bear mothers is incredibly accurate. Before Anthony got sick, I was quiet. I was what you would call a push over. If you said something to me with a stern or convincing voice, I either took your word for it or retreated no matter how strong or passionate I was on my opinion.
That Sarah went somewhere far away when Anthony got sick. I knew in my gut that something was wrong with my child and I demanded the best quality of care. There was no way I was going to lose him. And there was no way I wouldn’t be at his side through all of this. And so this woman who used to pass out at the sight of blood and could barely enter a doctor’s office never mind a hospital transformed into a forceful ‘Mama Bear’ who was thoroughly involved with her son’s medical care and wouldn’t stop until he came home healthy and safe. That’s who I’ve been since September 25th, 2014. Until a couple weeks ago.
I was strong. I was knowledgeable. I faced every obstacle with confidence and I felt no defeat. And despite the ups and downs of Anthony’s journey, including the introduction of his epilepsy, nothing could take away the positive force I knew could carry my son through anything brain tumor survivorship could throw at him.
So, these late effects of brain surgery we’ve been facing have really thrown me for a loop. It took me a while to admit this. To his doctors, to his teachers, to his therapists, to his coaches, to his father, but mostly, to myself. I had put an insane amount of pressure on myself to be the strength behind this fight that I really had no idea how to handle this obstacle. It was making me weak and that weakness was eating me alive. It was taking away from my job as a writer. It was taking away from my job as a wife. But, most tragically, it was taking away from my job as a mother and caretaker. Once I realized that, I knew it had to stop.
So, I looked deep within myself to find an answer. And, when I couldn’t find that answer, I looked to those around me. And, when I couldn’t find the answer there, I looked to those on our team. And, when I couldn’t find the answer there, I stopped looking. And, when I stopped looking, I found the answer right in front of me. I found the answer in Anthony. And, to no surprise to anyone, he taught me another valuable life lesson that has made me a better person, left me in awe of this inspiring human being I have in front of me, and brought back my strength ten-fold.
At the end of last year, Anthony had an EEG that didn’t give us the results we had hoped for. It was around the holidays and our doctors felt that our plan of action could wait until the New Year. So, I placed that test on the back burner and didn’t bring it up to many people. Why worry others and bring everyone’s mood down during the holidays when there was nothing we were going to do about it anyways.
Anthony’s last EEG showed that his brain is still SUPER active in the area where his tumor was removed-the open space that causes his epilepsy. Although his body was absorbing his new medication, the medication was not doing its job to decrease the electrical activity in that area of his brain. Meaning he was still at high risk to have serious, dangerous seizures. Not what you want to hear as a parent.
Fast forward to a few weeks ago. Anthony began to experience some seizure activity that was not his “normal.” It scared the shit out of me. So, I tucked that fear down inside my “strong” exterior and pretended I was fine. One night, while watching TV, Anthony was sleeping in between Rob and I. He began so lightly shake and Rob looked over to see him foaming at the mouth. More fear. After we got off the phone with the on-call in Boston and increased his meds for the night, I held back tears and told Rob I was fine. I stayed up that night watching him, overcome with a fear that he would become victim to SUDEP that night. More fear that if he didn’t wake up, it would be my fault for going to sleep. He made it safely through the night and I tucked that fear down with that of the day before.
A few days later I noticed that Anthony was having trouble hearing us when we talked. I would say something to him and he would respond with “What?!” At first I thought he was being a typical three-year-old and just ignoring me. But then I noticed the look of confusion on his face as he struggled to comprehend what I was saying while looking directly at me. Was he losing his hearing? What the hell was going on? I spoke with his therapists and his teacher and his daycare provider and all had noticed the same problem with Anthony. Here emerged another late effect of brain surgery.
Panic set in as I scrambled to find out what I could do to help him. More therapy? More help at home? Another trip to Boston? More tests? There had to be something. More fear set in as I felt my world unraveling. It was an emergency in my mind, but a completely normal late effect of brain surgery to doctors.
With the empty space in Anthony’s head, he has processing issues. When he goes to say something, or someone says something to him, his brain fires off to the original location of his tumor. But there’s nothing there. So, luckily those waves bounce off to another part of his brain where he can retrieve the information and go on with the conversation. But his retrieval is delayed. It’s like knowing the file is in the filing cabinet but having to check whether you put it under file A or file B before you can get the answer.
After speaking to Boston, we were informed that this is a normal late effect of brain surgery and Anthony will undergo some neuro-psychological testing to find out if there are other issues that have developed and if he will need other accommodations as he goes further along in school. Totally understandable. Totally acceptable. But, I wish I had known before so my brain could have processed this and expected it before fear began to consume me.
So, all these changes and my strength began to diminish little by little. And as my strength dwindled, my pride, or my self-expectations refused to admit that I was struggling. Until one day, during his normal daily routine, I witnessed these struggles take the first noticeable effect on Anthony. I saw him become frustrated with himself. I saw him unable to understand why he couldn’t just do what he knew he had to or what he wanted to. I saw him experience defeat for the first time. And, as he looked at me with tears in his eyes, I completely lost it. And when I say I lost it, I mean I FREAKING LOST IT.
There was no shutting off the flood of emotions that followed. I cried. I struggled to find the answers for him. I was mad. I was scared. I was heartbroken. I was unsure. I was overcome with fear of the future. I was weak. I felt like a failure. I, too, was defeated. And I had NO idea how to handle it. And the more I tried to tell myself I was ok and carry on and put on a brave face, the more I cried.
I swear three years of stress and every other emotion flooded out of my eyes like Niagra Falls. But, that wasn’t the problem. The problem was that I couldn’t snap out of it. I was dwelling. I was feeling sorry for my son. I was now feeling sorry for myself. I was negative. I was drowning. And I saw no light in sight. I was miserable. In my mind, the old, positive, strong, never give up Sarah was now the new weak, negative, and angry Sarah and there was no going back. The late effects of brain surgery swallowed me whole. Although I was super hero strong during everything we had been through, this would be the thing that killed my strength and I was done. I couldn’t do it anymore.
Then as quickly as I spiraled into this dark abyss, I snapped out of it. Driving along with Anthony, I was listening to some personal development on Audible, trying so hard to get my head back in the game. Anthony was playing with his toys in his car seat, watching out the window. I could never imagine he was listening along with me. The man on the speaker began to talk about your passion in life. What is your motivation? What drives you? What makes you get up in the morning and push yourself? What keeps you going when you fail? What helps you get back up when you have mentally given up? What are you good at? I’m good at being Anthony’s Mom, I thought. I’m good at staying positive in the face of truly tough times. I’m good at keeping my family strong. Well, I was good at that.
“Your passion is what you’re good at,” the man continued. “When you’re good, you’re good,” he said. And a little voice from the back seat shouted with passionate enthusiasm, “that’s ME, Mom! I’m good.” I chuckled and responded, “you’re right, Anthony. You are good. You are the best human being I will ever meet.” He went back to playing and the man continued. “If you want to be successful in life, you have to climb that mountain that’s standing in your way.” I heard a little voice from the backseat again. This time the voice wasn’t enthusiastic, but it was shockingly inspiring and thought provoking. “We’re gunna climb a mountain, Mom. That’s what we’re gunna do. We’re gunna climb a mountain, Mom. Let’s pick up Daddy and go do it.”
So, here I am. Climbing a mountain thanks to the inspiration of my favorite little warrior. He’s helped me through these emotions. He’s got me back to writing. He’s brought back my enthusiasm for life, and my passion. He’s taught me that the late effects of brain surgery are just another obstacle we will overcome. He’s created a new strength in me, one that is far more forceful than before. And he’s reminded me that true strength comes when you fall face first on the ground, and you get back up again.
Today, he did just that. His right sided paralysis got the best of him and he face planted into the cement sidewalk, blood covering his face. He cried for about three seconds…way less than I would have if I fell from an upright position onto my nose with nothing holding me back. He cried for a few seconds, got up, yelled at the cement for hurting his nose, went back in the house for some doctoring, and went on his way. When I picked him up from school, I asked, “how’s your face buddy.” He responded, “it hurts. But it’s better, Mom. But why did I fall? Why can’t I pay attention?” As I started to feel bad again, and go down the road of what’s next, I remembered that mountain we were going to climb. “It’s not your fault you fell, Anthony. Sometimes things happen and nothing we say or do can change them. But we accept them and move forward. Don’t forget, we’re gunna climb a mountain, Ant.”
Little does he know, we already have. Little does he know, he’s on his way to moving them.