Living with a life-threatening disease is not what you might think. It is worse, in some ways – but surprisingly better in others. I always imagined being very old before experiencing this myself. Never had I imagined that it would occur before I was 30 years old, and that it would happen to my 5-year-old child.
Learning that Gavin had a brain tumor felt like a forceful push into the future. I was no longer planning play dates; I was planning surgeries.
It was painful. It hurt so badly that I often could not breathe. My son could die, this tumor was showing its power and trying to take my child.
It is the first emotion that comes with the diagnosis. If you let it, fear will swallow your every dream.
It is what you need to fight back and come up with an attack plan.
It is the imperative emotion that parents need in order to send their child into surgery, hold their hand during painful procedures, and smile through the tears.
Without hope, fighting a life-threatening disease is near impossible. Hope helped me clearly understand our reality, while looking forward to better days. As I watched a needle pierce my son’s chest, I told him to squeeze tight and scream if it hurt. I was present, and could hear the puncture as if it was piercing my heart.
Imagining a Different Future
Yet at the same time, I imagined a future different than our current one. I listened to my child scream in pain and beg me to stop allowing pokes. I wanted to run away with him, to a place where operating rooms and IVs didn’t exist. Instead, I held his hand tightly, and whispered in his ear:
“You are strong buddy, you can do this. It will be over soon. Mommy will never leave you.”
Those days were worse than you can fathom.
As I experienced them, I was partly somewhere else because I could not fully engage in the reality before me. As Gavin had brain surgery, I would go to the bathroom that shared a wall with the operating room. The papers I just signed would flash before me – chance of stroke or death. I would fall to my knees and sob and pray and hope. The feelings are so strong that when I describe them, tears fill my eyes.
Days like this—desperation and pleading for my child to come out alive—are worse than I could have ever imagined.
“Mom, don’t give up, I am going to make it.”
But then, after imagining my child’s surgeon coming out to tell me Gavin had a stroke, or did not make it through surgery, Gavin woke up. He tried to pull the breathing tube out and as soon as it was out, he asked for root beer.
He continued to fight. Over and over again. He lost skills, and he regained them. He walked circles around the pediatric intensive care unit, just days after major brain surgeries. At age 7, he wiped my tears as he told me, “Mom, don’t give up, I am going to make it.”
He hated to see me sad, and even when I managed to hold back tears, he just knew. He showed me strength and hope.
Finding Joy in Simple Things
These moments were better than I could have ever imagined. Extreme joy and bliss. Going home and doing normal things were suddenly more important than ever. Experiencing my child run into the room, after months of not being able to hear words, and yell “Mom, I heard you say ‘library!’”
Watching my now 8-year-old child run and laugh with other kids and wrestle with his brother is a gift. Every day that he is winning this battle. Bliss.
Living with a life-threatening illness brings richness to life. It offers all emotions. Despair is matched with hope. Sadness with joy. Weakness becomes strength. It has allowed our family to find joy in simple things and to view life differently.
Choose hope over fear.
That is what I tell anyone fighting their own battle. On the hard days and the joyful days, Gavin would tell you to never give up.
Nicole’s story is shared through our Hope. Healing. You. campaign. To support families like Gavin’s and offer them a personal, protected space to share their health journeys, please consider a gift to CaringBridge.