I Hope Wherever You Are…
How do I start a post about loss? What could I possibly say that will fill the gaping whole in my heart at the passing of my brother, Scott? There’s no good way. I simply know I have to tell his story and the way he touched people’s lives.
My middle brother Scott was diagnosed with brain cancer before he was two years old. In fact, roughly the age my youngest son is right at this very moment. As I type, he sits beside me, playing house with his kitchen set and pouring pretend tea into a cup. I simply can’t imagine the hell my parents went through to know their son had a tumor ravaging his brain.
As a nearly five-year-old, I had my own personal hell dealing with it. Scott and I shared a bedroom across the hallway from my parents. Whenever he had bad nights, I would sit in the nook of the hallway, knees tugged to my tiny chest as they tried to comfort Scott in our bedroom. I still remember the way the hallway light looked odd in the still blackness of the rest of the night. It wasn’t my ordinary day-time view of the space. It was bleaker, more menacing.
Scott spent his second birthday in the hospital, preparing to undergo radiation. I remember us singing to him as he lay in his bed. The doctors were preparing us all that he may not live much longer. I remember my mom holding his hand and crying softly to herself. I remember worrying a lot about when he’d go and wishing this were all a dream.
Miraculously, Scott went on to heal from his tumor. The doctors had sent him home with no timeframe, but just saying to love him. My entire life, my brother Scott was like the sweet, adorable 7-year old of the family. Because of the tumor, his mind and body were stunted. In a weird way, he never grew old. He just always was Scott.
Everyone who met him, adored him. No matter where he went, or who he encountered, Scott made friends. Perhaps it was his outgoing nature. Or his goofy smile. My uncle Rick would even comment about how he needed to go out more with him because he was a chick magnet.
My youngest brother grew up knowing Scott, but never having lived through the pain the rest of us did. Scott, to him, was always Scott. For the rest of us, though we moved forward and accepted him as he was, I think we all worried about him.
For starters, he was often in and out of hospitals. When we were children, he would undergo seizures. He developed allergies to red dyes (both edible and otherwise). When my oldest son was born, Scott’s shunt malfunctioned and he nearly died. He was taken to Abbott Northwestern to have it replaced. Later, his seizures got to him and he was back at Abbott. This summer, Mom and Dad knew something wasn’t right, but they figured it was more seizure activity. None of us were prepared to take the news we received.
At 35 years old, after all these years of being in remission, Scott’s brain cancer was back. This time, there was a walnut sized tumor pressing on his optic nerve at the base of his spine and three other smaller cancer masses and lesions in the brain.
My husband and I had just returned from our road trip to South Dakota and Wyoming with five of our children. I remember thinking, “Oh my god. This is the news I’ve always feared would happen.”
Deep down, I knew Scott was on borrowed time. I knew his lifespan would be cut short simply because of his medical issues. But you’re still never fully prepared for it when it happens. Especially since he’s been such an integral part of my life. Of my children’s lives. In a way, he was the one constant. Partially because of the fact he never really changed. Not in appearance. Not in interests. Not in life experiences… at least, not really. He was always there.
It took less than a month. Oddly enough, that time frame felt (and still does) both extremely fast and excruciatingly slow.
In less than a month, my brother went from being Scott to … being gone.
The doctors prepared for more radiation, but it was only a temporary fix. Everything was inoperable. It would buy him a little time, but no one knew the quality. After finding out the news, he was sent home until the radiation physicist had their plan of attack. He was home one day before he aspirated and was sent by emergency helicopter to the ICU at Abbott. There, he spent the next two weeks on a ventilator. I was lucky in a sense. The one day he was back home, my children and I visited. He was still able to sit up, though drowsy. I was able to talk to him, and tell him I loved him. I visited twice while he was in the hospital. Since he was nearly four hours away, it made things more difficult. The first time, my husband and children came with.
The final time, I was alone. By that point, he was in the oncology department and put on “comfort care”. Which basically means all life support is removed. He was breathing on his own, but couldn’t wake long enough to eat, drink, or speak. They removed his feeding tubes and IV.
I spent that final day with my family. Mom, Dad, and Scott. My youngest brother wasn’t able to be there, so in a way, it was very reminiscent of the beginning. When it was just the four of us. I knew it was the last time I would see Scott alive.
The next morning, just after 8am, my mother called to tell me Scott was gone. He had managed to wake her as it was happening, though. She slept, holding his hand as he had when he was a baby. For whatever reason, she heard and felt him as he took his last breath and let go.
Days before, Scott was able to say goodbye in his own way. He smiled, though not awake. He held on to my aunt Bonnie’s hand and played the game of “gotcha” he loved so much. He had a very playful, teasing soul.
It’s strange. As things are deteriorating, you know why he has to go. Why he, on some level, has decided it’s time. His body was corrupted beyond repair. And it was clear he didn’t want to go through radiation (because he aspirated and was on a ventilator, they couldn’t begin radiation therapy, even though the plan was ready). Before the end, I tried to be strong and pragmatic. I understood the why. Not only of Scott’s life and that it was his time — but why the doctors couldn’t do anything more for him.
When it’s all over, though, your mind reverts back to when times were better. When he was full of life and seemed healthy. Those are the times I mourn for. I miss him so much already. I miss his laughter, and the way he’d chase my kids around the house. How he’s always ask to hold the babies. Always. He had and was filled with so much love.
If there is one thing I take away from being touched by his life, it’s this:
Even in adversity you can find peace, love, and joy.
Scott never held grudges. He never hated. He was pure love for everyone and everything around him. His disabilities never stopped him. It never crushed him. He was amazing and truly my hero. My heart aches and I miss him so much. But I also understand why he had to go.
I hope wherever his energy is now, he’s enjoying every moment of his new-found freedom. He deserves it all.
I love you, Scotty. Always. ❤
