When I was fourteen years old, I remember consciously deciding I wanted to distance myself from my mom. She was everything to me. My life seemed to depend on hers like the umbilical cord that once connected us. If I lost her one day, how would I survive? The idea of that heart break forced me to this conclusion. But I grew up and my conviction faded. Over the years, I have become even closer to her. We’ve often joked that we may not have been friends if we were the same age, but our relationship as mother and daughter has been unbreakable. The soil that my flower of life has grown from.  ..read more

When I think of the first few years of Mila’s life, I think of trees, trails and sunlight. Our days were spent exploring the mountains and forests that had drawn me to Colorado. One spot in particular became our special place. Tucked up in the foothills, the Anne White trail ran just alongside Fourmile Canyon Creek. A gradual climb, shaded by trees, perfect for little wandering feet and exploring hands. We would set out for a morning walk, and within minutes Mila would pull off her diaper and into the creek she would hop. As I followed behind her, she would make her way through the shallow wa ..read more

When I think of the first few years of Mila’s life, I think of trees, trails and sunlight. Our days were spent exploring the mountains and forests that had drawn me to Colorado. One spot in particular became our special place. Tucked up in the foothills, the Anne White trail ran just alongside Fourmile Canyon Creek. A gradual climb, shaded by trees, perfect for little wandering feet and exploring hands. We would set out for a morning walk, and within minutes Mila would pull off her diaper and into the creek she would hop. As I followed behind her, she would make her way through the shallow wa ..read more

I pushed the glass door open. As I walked inside, the warm smell of sweat and chalk rushed by me. The echo of children’s voices bounced around the wide open room. On the walls were colorful dots and spider-like kids with legs and arms clinging to rocks. I had been here before. I remembered it like it was yesterday, but seven years had passed. I turned my head to the left and there was the wall that Mila had climbed to the top of when she was just two-years-old. Attached to her harness, we had watched her quickly make her way up the forty foot wall, carefully placing each foot on the climbing ..read more

It was a snowy January day in Boston, the start of 2018. We had just arrived from Colorado a few days earlier. The sky was gray and the temperature was getting colder. Snow pushed up against sidewalks and cars. Our rental house with its steeply pointed roof covered in large old shingles sat on a quiet side street, with snow piled around it. I had looked for a spot to live where Mila could get outside and push her stroller without the city sounds of honking cars and sirens overwhelming her. Every day, I hoped to receive the call that her treatment was approved, as her strength was rapidly givin ..read more

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 ..read more

I held my breath and knocked. I waited, and turned my head to look down the empty hallway to my right, the grey carpet and grey walls fading into each other. I looked back and found the doorbell. Taking a deep breath, I reached out and pushed the round black button. Footsteps grew louder. The door opened and there was Lori, just as I had seen her in articles online. Her big smile and bright blonde hair welcomed me into the apartment. We wrapped our arms around each other tightly and held on for what seemed like minutes. We were strangers with no reason to cross paths. But life had thrown somet ..read more

Eight months ago, Mila began a first-ever genetic treatment. We were entering unknown territory. We knew nothing could be worse than the trajectory of her disease, and could only hope that it might stop the degeneration. With her diagnosis of Batten just one year earlier, I felt I was handed a crystal ball that would show the remainder of her short life. I wanted to throw that ball as far away as possible. But it grew around my hands and wrapped around my fingers. My eyes were forced open, forced to look inside and see my daughter growing older, losing every ability and happiness she had known ..read more

   I give the front door a push with my hip as I turn the key in the old lock. The door opens with a pop, the dried paint coming unstuck from the door jam. I stop for a moment and look into the front hall, empty, just as we had found it when we first moved in, when I was pregnant with Mila. The emotions from eight years earlier came rushing over me. The excitement of actually owning our first house. The charm of the 1930s high ceilings, curved moldings ..read more

   My emotions run high. Tomorrow marks the end of our five month stay in Boston around Mila's genetic treatment, as we prepare to head home to Colorado. Our bags are packed and the kids are in bed. The sound of live Cuban music dances through our open window and lures me out onto the streets of our neighborhood. The air is warm tonight with a slight breeze just cool enough to keep me moving. A final evening stroll allows me the rare chance to clear my ..read more