A few days ago, I was in the soap aisle at Target when I heard a familiar voice. I pushed the detergent back on the shelf, and hurried around to the next aisle. There she was. It was Rose. She looked up at me and I smiled.
The last time I had seen Rose was three years ago on the day I said goodbye to our house on Pine Street, the house I carried my babies into just after they were born, where they learned to crawl across my grandmother’s rug and to climb the stairs for the first time. Pain had filled my heart as I thought of leaving behind the house packed with the greatest memories of my life.
It was 2016. We had just moved out one month before, but I had been going back to the old house, collecting the last items left in the tops of closets and the backs of drawers, prying kid locks off of doors, hanging curtains. It was almost seven pm and I was hauling a few buckets of cleaning supplies, tape rolls, paint rollers and trays out to the curb. I walked back to the front door, recently painted a bright blue. I stopped and admired it, then pulled it shut one last time.
Just in that moment, I heard Rose’s voice. She mumbled in the distance. I walked through the black wrought-iron gate and opened the back of my car, lifting the pile of supplies on the grass into the trunk. It felt so appropriate that I would run into her on my very last day on Pine Street. She had become part of my life over the years. Our house fell right on the route she walked every day from the assisted facility where she spent her days to her apartment a few blocks away. She might have been in her mid fifties, and she lived with a condition I will never know. She was smart and straight-forward. Her blue eyes were bright as ice and inquisitive, her silver hair cut razor short. Her voice was deep, slow and monotone. She was just, Rose.
I felt myself rushing, guiltily, knowing that Rose would spot me soon and wanting to get home after a long day to sit down, hug my kids, and eat the dinner my mother-in-law had just prepared. I had been painting and cleaning for the past five hours and was more than ready to close up the house and leave. I had said my goodbyes, walking around the house one last time, stopping to speak out loud the memories that filled each room. What began as pain turned to tears of happiness as I watched the past six years of my life run like a movie reel through my head.
I picked up the last bucket and put it in the trunk, lifting my head to peer through the car window in search of Rose. I stepped back and there she was in front of me in her oversized T-shirt, her black guitar case over her shoulder. She looked at me sternly. “Are you leaving?” she said slowly. She had asked the same question a month earlier, but I had managed to dodge it. Rose didn’t like change. The thought of an unknown future that was new and different worried her. This time, though, she caught me by surprise. “We are, but we’ll be back to visit”. I felt bad finally telling her the truth. “Boo hoo. I’m sad”, she said. Her emotions struck me.
I took a deep breath and relaxed my shoulders. I could make this time for Rose. I gave her my hand. She was already reaching for it. She always loved to hold my hand. It seemed like her way of connecting with the world around her. I could relate. “Your hands are cold. Are you cold?” she asked. “Yes”, I told her. Fall had arrived, it was getting chilly tonight and I was still in short-sleeves. “Cold hands, warm heart” she said in her deep monotonous voice. She gave me a half smile, her bright blue eyes staring intently into mine.
“I like you. Why are you leaving?” she wanted to know. I told her we wanted more space for our kids and we wanted our parents to come stay with us, to help us. “Why?” she pried as if she already knew. Because we needed more space for our children, I said again, and was about to stop there. I didn’t have it in me to tell her about Mila’s unexplainable vision loss, her tripping and falling, her stuttering, her screams in response to loud noises. And how each symptom seemed to be getting progressively worse recently. How could I tell someone that faced her own challenges how scared I was, how desperate I was to help my little daughter who seemed to be deteriorating. And I wasn’t sure she would understand. But something made me continue. “Our daughter needs a little extra help”. Rose paused, her small bright blue eyes surrounded by pale, slightly wrinkled skin stared into mine. “Will she drive?”. Tears welled in my eyes. “Maybe, I’m not sure. Or maybe not”. I suddenly felt sad after uttering those words, but they were raw and honest. There I was, standing on the curb with Rose, exposed. I could see that she was thinking hard. “Or will she take the bus?” she continued, pausing, as if she understood. “She might, I don’t know”, I heard myself respond.
“Your hands are cold, Julia” she repeated, annunciating each word with no change in tone. She lowered her head toward the ground and started to mumble, lost in her own thoughts it seemed. We let go of each other’s hands. I wasn’t sure I would ever see her again. Then she turned and continued walking slowly down the sidewalk toward her apartment. I opened my car door and looked over my shoulder. Rose was a little farther down the sidewalk. She had stopped and was turned to one side, talking to an imaginary person beside her. “Maybe she’ll take the bus with me”, I heard her say.
My lashes fell to my cheeks. Tears poured down my face.
That was 2016. Now I was seeing Rose again for the first time in years. As I stood there, I thought back to our conversation on the curb. So much had happened in my life since that day. “Julia” she said. She remembered me. I certainly hadn’t forgotten her. “How is your daughter?” she continued. I couldn’t find it in me to tell her that just a few months after we last met, Mila was given a death sentence - Batten disease. I paused. We sat in silence for a moment. I answered in the way I’ve learned is most honest and comfortable for me, with simply how I feel that day. The larger question is simply too difficult to explain in passing and perhaps more than what most people want to know. “She’s doing pretty well today. Thanks for asking about her, Rose.”
It hit me right then that the thought of Mila taking a city bus with Rose now seemed like a dream.
Mila’s future is unknown. Three years ago she was given no hope at all. None. And just one year later, after the most unbelievable fight of a lifetime, her destiny shifted directions and she was given another shot at life. Now, we find ourselves in unknown territory, farther down the tracks on the roller coaster of Mila’s life. No child has ever lived with Batten disease. Scientists barely understand what the disease does in the brain and body. And Mila had lost so much before her treatment even started. The dominoes of genetic disease had fallen for seven years and the question we all continue to face is “How many neurons were we able to save in time and how many were too far down the line in the dying process to be stopped?”. We all knew going into Mila’s treatment, that it was a Hail Mary.
Amazingly, we’ve seen more promising signs than we ever expected - many of her disease symptoms have stabilized, even improved. She lives an almost completely seizure-free life. She still stands and takes steps with assistance. She still eats mostly by mouth. And her hands are able to open smoothly to feel the table, the top of the stairs, the door knob. But she isn’t as responsive to the songs and stories that used to make her laugh. An indescribable pain. But after each dose, her smiles and laughter return temporarily making us question what this means? It’s a complicated disease and an entirely new drug. So much is still to be learned. While I am grateful every day for where she is compared to where she should be today, we keep fighting, learning and working on ways to save Mila while we still can.
As we walk down this unknown path, I continue to keep one foot in hope and the other in reality. Tonight I reflect on how I crossed paths with Rose just at a time when I questioned Mila’s future. I smiled and thought to myself “Who knows. One day maybe Mila will take the bus with Rose.”