Today marks one-thousand three-hundred and nineteen days since we were introduced to the pediatric brain tumor community. We are seven days into the month of May, which is brain tumor awareness month. I’ve always been an open book when it comes to Anthony’s medical journey. My feeling has been that if his story can help another child or family, there is a purpose for his pain. But, while I feel like we’ve done a good job helping others in the brain tumor community, I recently realized that my commitment to focusing on the positive has kept me from helping many other parents in this journey.
So, in honor of brain tumor awareness month, I’ve decided to share the serious struggles I have faced alone, as the mother of a child with a chronic illness. It was in talking to an amazing woman I met at Epilepsy Awareness Day in Hartford that I realized how important it is to share the not so bright side of our medical journey. As we talked about our similar, but very different, struggles with Epilepsy, she taught me that being strong doesn’t mean pushing forward and acting like it’s easy to look at the good all the time.
Being strong sometimes means sharing the parts of this journey that make me feel vulnerable. The feelings that I often choose to keep to myself. Sadness. Fear. Being overwhelmed. Exhaustion. Anxiety. Depression. I face them daily. In fact, some days I can’t seem to get past them. But I usually do, and Anthony generally inspires me to keep going.
There’s one obstacle I have faced that makes being the parent of a brain tumor survivor particularly difficult. PTSD. Post traumatic stress disorder. I was diagnosed with it a little over two years ago. I don’t face it every day. But on the days I do face it. IT. IS. HARD. Here’s why…
I started to think handling this obstacle alone was beyond my control the first time I experienced a real flashback. We were driving down Grassy Hill Road from Derby to Milford. We were almost in view of the fork that leads you to the Merritt Parkway when Anthony threw up.
The combination of him vomiting and us being by the entrance to the Merritt Parkway on Grassy Hill Road was my trigger. Less than a year before that particular instance of vomiting on Grassy Hill Road, Anthony had thrown up in almost the exact location on our way to his pediatrician.
Vomiting was a symptom of Anthony’s brain tumor. And when he threw up in that same spot a year prior, we were heading back to the doctor after his vomiting wasn’t getting any better. I had just told Rob that I felt his vomiting was related to motion and BOOM! He started projectile vomiting in the back seat. Until a year later, when he threw up in almost the same spot, I didn’t remember that instance. But, the sequence of events happened again, I experienced a flash back.
In that moment of panic, I literally couldn’t separate what was now and what was then. I was stuck. I guess I was literally back at that moment a year prior. I kind of remember shaking my head a bit to bring myself back to reality. But, the feelings that followed that flashback were pretty intense.
I was in a complete panic. In my mind, the tumor was back. We were about to go through this all over again and what if he wasn’t so lucky this time? I got myself so upset over that small bout of vomiting that I became physically sick. Although he didn’t vomit again, and doctors said it was likely just a stomach bug, I faced this fear every day for two months. And it finally subsided when his regularly scheduled MRI confirmed that Anthony was still tumor-free.
Until I had that scan, nothing and no one could convince me that his tumor wasn’t back. Because that flashback tricked my mind to believe it was there.
When I was diagnosed with PTSD, I can’t say I was surprised. Although most people attribute the disorder to military persons who have fought in war, I had heard of non-military people being diagnosed. And, in talking to someone close to me it became even clearer.
“Are you kidding me?!” he said when I said I wasn’t fully convinced that’s what this was.
“You don’t think you haven’t been through war in this journey?” He asked.
I guess I hadn’t thought of it that way. “Come on, honey. Your battle was against this brain tumor and you had to lead your troop into the fight.” When he put it that way, it made total sense.
We had gone days without sleep. We only ate because we had people forcing us to keep ourselves fueled to be strong for Anthony. Rob and I both handled this battle differently, so we struggled with trying to be understanding and helpful to one another. That was a battle in itself.
After three days without sleep, we started to alternate shifts of two hour naps at a time. If I couldn’t fall asleep in my two-hour window, I could feel myself battling frustration and pure exhaustion. Sometimes it felt like I couldn’t breathe. If Rob tried to give me a little more time to make up for the minutes I wasn’t sleeping, he struggled to not surrender to his exhaustion. And God forbid either of us happened to doze off while trying to stay awake during our two-hour time slot. It was hard.
When we came home, it got even harder. We no longer had the security of beeping machines and skilled nurses to back us up. We really didn’t know what to do with our son. We didn’t come home with instructions or a pamphlet of what to expect. It was the three of us and we had to just wing it. I would stay up all night and only let Anthony sleep in my arms or his bouncy chair. And, only if I had to, I would sleep around the bouncy chair with my hand on his chest to be sure he was breathing while I got a quick cat nap in.
And going back to work!? It was hell. I had an unsympathetic, far from supportive boss who failed to see how many times I had put Anthony aside for my job’s sake. She constantly busted my chops about having to take a day off, even though I had plenty of time saved up. So, the guilt continued to rise in us as we felt we couldn’t be there when Anthony needed us. And it wasn’t that he wasn’t in excellent care from his daycare or my parents. It’s just that you feel so guilty when it can’t be you after all he’s been through. And that guilt never goes away.
So, for the last few years this has been a circle we’ve faced. Just as the guilt subsides and we start to get back into a normal routine, we’re hit with another obstacle. We fall back into the darkness of PTSD.
We face intrusive memories that include flashbacks and nightmares and recurring negative thoughts. We avoid people and places that remind us of difficult moments in our journey. We doubt ourselves. We lack feelings of hope and compassion. We feel numb.
PTSD in parents of pediatric brain tumor patients is a real hurdle we face. This week we went to Boston Children’s Hospital to undergo some tests for Anthony. It was a hard week. Of course, AFTER all the tests, he came home and had quite a few seizures. So, we went back to not sleeping. But, to be honest, we can’t stay up through the night like we used to.
I fell asleep for a moment and woke up from a nightmare that he wasn’t breathing. I jumped up and nudged him to find that he was perfectly fine. But for three hours I couldn’t shake the fast, hard pounding of my chest as my heart tried to go back to normal. It’s moments like these that I’m sure other parents face.
To those parents, I’m sorry. I know what it’s like to deal with these moments. I know what it’s like to handle them alone. And, although we may not have exactly the same journey or exactly the same feelings or thoughts or emotions, I know what it’s like. It’s hard to find normal. It’s hard to build trust that everything is going to be okay when it’s been one-thousand three-hundred and nineteen days since you last felt carefree. But I think there’s hope that although the trust will never be 100%, it’s something that can build over time.
We’ve made it our mission to spread awareness for pediatric brain tumors since our son, Anthony, was diagnosed with his choroid plexus papilloma at five-months-old. Today, Anthony just celebrated his fourth birthday. He is a happy, loving little man who appears to be the picture of health. In reality, although Anthony is truly the happiest, strongest person I know, he faces daily struggles as a result of his brain surgery. And, I think it’s important to know that so do his parents.