Control is such a simple word. Yet, it’s a word that takes on deep meaning when we lose control or feel out of control in a given situation. I think that is the part about Brittany’s brain tumor that was the most difficult for me to wrap my mind around. Despite our research and top-notch doctors, it was clear that we were not in control of the tumor. It was like Brittany understood this from the day of her diagnosis. For me, it took time. Time to truly understand what we were up against.
I learned so much from Britt during the weeks after her diagnosis. While she prepared for the inevitable, I stayed in a mental space that protected my heart.
I know that denial is seen in a negative light and hope is seen in a positive one, but I’m not sure if they should be. Denial is an unrealistic hope; a false hope. Some would call it unfounded optimism. I would say that defining “unfounded” is hard for those faced with terminal illness.
It is difficult for the families of those faced with terminal illness not to be in denial. Both hope and denial distanced us from the pain. These normal self-defense mechanisms acted as a distraction; we spent precious time looking for something to support our belief that there was reason to hope.
I recall my husband saying to me, “Let’s hope for the best, and prepare for the worst.” Even though he said this, he was invested in trying to find some research to support the hope, while leaving the preparation for the worst to others. I was so invested in wishing for a miracle that I welcomed this as our strategy.
After her craniotomy, Brittany told me, “Momma, I’m dying. You know that, right?” Somehow I’d let myself believe that I didn’t need to think about Brittany dying anymore, because she’d made it through the craniotomy. I didn’t want to talk about death.
But, my girl…my amazing girl knew that she needed to prepare for the reality of her disease. “I’m not saying I wouldn’t love a miracle. But if we just back away and look at the situation very clinically, no one has survived this type of cancer. You see that, right? No one.”
As I moved around in a depressed fog, searching for miracles, my child asked for pathology reports, proposed therapy, and life expectancy. She had already accepted the fact that she was not in control of this tumor. So, she focused on the part that she could control…her pain, her suffering, and her unavoidable death due to a terminal illness. She was so young and so wise. I carry her lessons with me daily.
On May 28, 2017, I found myself in the midst of Heathrow airport during a very stressful time. I was on my way to Germany as part of my book tour.
More than a third of British Airways flights from Heathrow had been cancelled.
The airline had been hit by a worldwide computer system power failure on Saturday, causing cancellations and delays for thousands of passengers.
As the chaos surrounded me, I did my best to remain calm and focus on the things I could control. Below you can see the photo I snapped as Gary and I navigated through the airport.
I took a deep breath and went window shopping to pass the time. Unfortunately, there were not enough windows to look at for the amount of time needed for these types of major delays.
So, I did the next best thing, I looked for the part I could control. I gave myself a pleasant experience in the midst of the chaos. I could not control our flight or the computer issues taking place, but I could control my reaction to it all.
So, Gary and I found our own calm spot and I switched from ginger ale to something, a bit stronger, and I found a sparkling cake to go along with it. I did my best to focus on the blessings along the way. I think Britt would be proud of me.
I made sure that I did my best to be grateful for the moment. I’m fortunate that my daughter taught me the value of these moments.
When I finally made it to Germany, I woke up happy. I was exhausted from the previous days events, but I was genuinely happy. Happy that the book had been translated into German and that my daughter’s story would continue to impact the lives and hearts of others.
Britt spent her final months fighting for the rights of those with a terminal illness to have a choice and I will spend the rest of my life, sharing her story in an effort to educate, advocate, and continue to make a difference.
Darling Britt, I just spoke here in Germany about your brave journey. Each beautiful place I go, every joyous moment I feel, I remember what you told me. “Live, Momma. And speak up, even if your voice shakes.” Oh, sweet girl, I’m speaking through a shaking voice, tears, and so much more. You are with me. Always.
I love the cover of the German edition of the book. Isn’t it precious?
Lost and Found
As Gary and I spent one of our days travelling abroad lost and confused, we both had to laugh at ourselves. It wasn’t where we expected to go or what we expected to see. But, the day was a gift and being lost, well it’s part of travelling. So we had a good laugh at ourselves and remembered the beauty in each day.
Sometimes, our road is broken and bumpy, but as long as we keep moving forward, bit by bit, we continue to live.
This was my, where am I pose. We were lost. Very lost. But, very much living, laughing, and experiencing.
Brittany didn’t choose her terminal illness. She didn’t choose to have a Grade 4 Glioblastoma. That was something she had no control over. She was going to die. It was inevitable. But, her suffering, pain, and death did not have to be left to fate. After reading about the type of death she would endure, Brittany took control of her terminal illness and she chose how much pain, how much suffering, and what type of death she would have.
Once Britt realized the many steps that had to be taken, as a terminally ill patient, to relocate to Oregon and utilize their death with dignity law; she knew changes needed to be made. She realized that relocating to Oregon was not something easily attainable for many suffering from a terminal illness. So, her final months were spent educating and advocating in the hopes that every terminally ill patient would someday have a choice.