A woman from Hospice by the Bay came to the house to meet us and answer any questions we had about hospice care. She brought along a one-inch binder for us to look through, which contained general information, Frequently Asked Questions and questionnaires to fill out indicating final wishes (for example, if you’d prefer to be buried or cremated). There were also guidelines on what to do in an emergency: we were to call hospice first and not 911, and Mom was not go to the hospital for any reason unless authorized by hospice to do so. Finally, there was a Do Not Resuscitate form to look over. It was a lot to take in.
We had some questions. Would she still be able to get a prescription for Neratinib [the experimental drug she was taking] while on hospice? “No, because that is considered a cancer treatment.” If the Neratinib started kicking in and making her feel much better, could she be taken off of hospice and continue that regimen? “Yes.” Mom had just begun taking the medication and we still had some hope – a little mustard seed of faith that we wished would explode into miraculous field of gorgeous mustard flowers (representing restored health, of course).
I’d seen fields covered in those stunning bright yellow flowers many times before in Sonoma and Napa Valley. Wouldn’t that be a great ending to this story? If anyone deserved that kind of happy ending it was Mom. But I had a gut feeling this wasn’t to be. I could see her deteriorating right before my eyes, and in the back of my mind was the doctor’s prognosis: 9-12 months from the date of diagnosis. We were at month 11.
Mom wanted to take a few days to look everything over before signing on with hospice. That seemed like a wise idea. In the meantime, her lung without the catheter was full of fluid again and she was getting very uncomfortable. The next morning when she woke up, she couldn’t even speak. She wrote down what she would like for breakfast that day: “Banana bread toasted, cream cheese on the side.”
I know she hated not being able to get it for herself. She had used all of her energy walking from her bed to the dining room table. I served her the banana bread with a dollop of cream cheese on a small white plate, sat down next to her and said I wanted to talk to her about something. I explained that Jonas and the boys would be coming back to Sonoma soon to say goodbye before we returned to Paris and I was worried she would be too sick to see them if we didn’t get her lung drained. It would mean going to the ER to have it done because it was already the weekend and Marin Cancer Care would not be able to schedule an appointment at the hospital like they normally did. The ER was not her favorite place. I wasn’t even sure if we could get her there because she was so weak. Not only did she agree to do it, she used every ounce of strength she had getting dressed, walking down the garage stairs and making her way to the car. One last gift for her grandkids.
We pulled up to the ER in Marin and I ran to get a wheelchair for Mom. Dad made sure her oxygen tank was secure next to her and I wheeled her in while he parked the car. After a couple minutes in the waiting room, we were all taken to a small cubicle for triage. The nurse asked a series of questions and ticked off boxes on her form. I was focused on the questions until my Dad said, “Aww. Mama’s crying.” I looked over, stunned, and saw her in tears. I bent down, put my arm around her and asked, “Mom, what is it?” She replied, “I’m just so tired.” I kissed her on the cheek, the same way I do instinctively when one of my boys is crying. I said, “I know, Mom. This is the last time. I promise.” We were transferred to a large room flooded with fluorescent light and separated by curtains. A couple hours and one botched fluid replacement later, we were done. Mom was breathing much better, but was exhausted. During the hour-long car ride back to Sonoma, she slept the whole way.
Later that evening, Mom and I sat at the big, round dining room table again. She said she’d been thinking about things and she didn’t want me to try to make it back to California before she passed away. She wanted me to stay in Paris with my family. She added, “If I start going downhill and you jump on a plane, you might not make it here in time anyway.” I let it all sink in and finally said, “Okay.” We agreed that when it was time for me to leave, we’d say our final goodbyes. I could tell she was worried about me. I said, “It’s okay, Mom. I’ve prepared myself for this.” I was surprised by my confidence and certainty in that moment. As the evening went on, I began doubting myself. When I laid my head on my pillow and tried to fall asleep, the words swirled around in my head over and over again: I’ve prepared myself for this. I had, to a certain extent, but I don’t think anyone is ever really ready to say goodbye forever to someone they love. I wrestled with the idea all night. I cried, prayed and asked God to give me the strength to actually do it.
I woke up the next morning and started my day off as usual by reading a devotional called Our Daily Bread. In the first sentence of the devotional, there was a reference to a brook flowing through a forest, which practically jumped out at me.
My mom’s name is Sylvia, which means “of the forest,” and my name, Brook, refers to a small stream. These words in print reminded me that time, space, even death could not separate us. She is my forest and I am her brook. Whether on earth or in heaven, we will always be bound together by love. That morning over breakfast, I shared this story with my mom. I told her I was thinking about the peaceful, tree-lined brook I spotted in Sonoma back in February. (We pulled over to the side of the road to take a picture of it one day so she knew the exact one I was talking about.) I said I was feeling at peace and knew everything would be okay. I think knowing this gave her some peace too.
Jonas and the boys finally arrived in Northern California and we got settled in a nearby Airbnb. The plan was to spend the 4th of July with my parents before heading back to Paris. Mom wasn’t feeling very well that day so we stopped by the house for a bit in the early afternoon and then Jonas and I took Rhône and Rocky to the Sonoma Square for the festivities.
We listened to live music, let the boys wrestle on the lawn, ate scoops of shaved ice drenched in red, white and blue syrup, and slowly made our way back to Mom and Dad’s. Rhône and Rocky watched TV with Mom while Jonas and I prepped dinner. We sautéed some sausages in a pan and served them in brioche buns with sides of potato chips and sliced watermelon. Mom requested some watermelon. I can’t remember if she finished her slice.
That day she was wearing a red, white and blue striped shirt and an American flag scarf that Hilary and I had bought for her a few days before. I had on a matching shirt and some ridiculous leggings adorned with stars and stripes. I knew she’d appreciate that as a fan of Americana. After praying for a meal, she always liked to look at Rhône and Rocky and enthusiastically say, “God Bless America!” The boys would widen their eyes and giggle. Anyway, she was quite the sparkler in her 4th of July get-up. Hilary couldn’t make it to Sonoma that evening and requested a picture of Mom in her special outfit. I made sure to take a photo of her with Rocky and Rhône individually and I asked Jonas to take a photo of Mom and I together as well. When I look at that picture now, I always break down. We are hugging each other closely. Our cheeks are touching. We are smiling genuinely, so caught up in our patriotic reverie that we don’t even realize this is the last picture we’ll ever take together. Mom was feeling terrible that day, but looking at the pictures of her, you’d never know it.
While Dad, Jonas and I cleaned up and did the dishes, the boys snuggled on the couch with Mom and watched some more TV. I started tensing up, knowing we’d have to leave soon. I fought back tears as I knew these would be some of the last moments our kids shared with her. I thought of the brook and the trees and reminded myself that everything was going to be okay.
Earlier in the day Rhône and Rocky had found a package of party poppers at the playground and I said we could use them at Grandma and Grandpa’s. We all gathered in the backyard and took turns pulling strings and watching confetti spray out of the tiny plastic bottles accompanied by a loud pop. Each time the boys squealed and laughed, and my parents’ faces lit up. I was happy to see them smiling.
It was getting late and I realized it was time to say goodbye. Rhône and Rocky hugged my parents in a joyful, carefree way, as if they’d see them again in a few days. Jonas and Dad helped the boys get into the car while Mom and I stood near the front door. I gave her a long hug and she started crying. We each shared how much we loved each other. I realized whatever I said next would be the last words I’d ever say to her in person…and I didn’t know what to say. I told myself, “This can’t be it. This can’t be goodbye,” so I said, “I’ll call you soon, okay?” I walked out the front door and down the porch steps. I’ve prepared myself for this. I looked back at my parents. Mom was in the doorway and Dad was on the porch looking wistfully at the ground. It felt awful to walk away at this moment, but I knew I needed to. I wanted to be strong for them both and for my own family. I forced myself to turn around and get in the car. I rolled down the windows and told R+R to wave goodbye. As we drove away, Jonas honked the horn twice as usual, and I yelled out, “God Bless America!”
Three weeks later, I got the call I dreaded. Mom had collapsed suddenly one morning. Dad said he tried to resuscitate her but was unsuccessful. He told me the EMTs were at the house and they were about to take her body away. I was in shock. This was not how I envisioned things happening. I thought she would be in bed, a hospice person would tell us she didn’t have much time left, and we could all say our goodbyes and whatever else we wanted to tell her via phone or in person. I had been trying to call her and talk to her the two previous days but each time I called, she was asleep. Even though the kids and I had spoken to her on the phone a few times before that, it wasn’t enough. It felt like we never got our final goodbye. I wanted some sort of closure. Surprisingly, I got it.
That night I had a dream that Jonas, the kids and I were visiting our friends Nina and Barry in Oregon and they took us to an indoor food market that reminded me of one I’d visited in Napa with my parents. Suddenly my mom was walking alongside me. The dream was interrupted at this point. It felt like someone was taking my bedspread and flapping it up and down near my feet. I stirred in bed. The flapping continued. It was as if someone was trying to wake me up. I thought it could be Mom. I went to speak but no words came out of my mouth. I wanted to call out to her. Forming any word was laborious but I finally managed to say, “Mama?” My eyelids fluttered and I tried to look around the room. Everything was dark. I said it again: “Mama.” My eyelids were heavy so I closed them. I heard her say, “I’m here!” She sounded thrilled. I said, “I love you.” She replied sweetly, “I love you too.” And then she appeared. She was right in front of me looking healthy and radiant. Her silky white hair hung just past her chin with a small flip outwards. She was wearing a periwinkle blue top and she was surrounded by sparkling light. She was clearly in heaven. I exclaimed, “I see you!” and reached out my hand to grab hers. She smiled and immediately extended her own. Even though we weren’t physically touching (I could not feel my hand gripping hers), we were connected. Then she was gone. I woke up feeling a bit confused about what just happened but completely at peace.
Was it all just a dream? Wishful thinking? Or was it a true visit from my mom? I can’t say for sure, but I can say I’ve never experienced anything like that before or since. The good news is that I received the peace and closure I was looking for. In the time leading up to Mom’s passing, I was trying so hard to prepare myself for “goodbye” and I now see that I didn’t really need to. She was and always will be by my side.