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In April 2013, I learned I was pregnant with Piper. I remember being overcome with joy. At that point, Neddy and I had been married two years and together for 11. We always knew we wanted to be parents, but we also wanted to be ready. We decided to wait until he graduated law school and we had a house to call home. We were finally prepared, and the world was perfection.

Weeks later, on May 21, I got a frantic call from my sister as I headed to work. She told me an ambulance had been called for Alex, our younger brother. I drove to her house where we sat panicked and waiting for more information. Finally, her phone rang. It was my mom. While they spoke, I searched her face for answers…for a sign of hope. But after a couple minutes she looked up and said, “he’s gone.” Two short words to describe so much. Alex had bipolar disorder. He tried to take his life a few years before. We knew it was a battle for him, but he had come so far. My first thought was that he overdosed, accidentally, on the one of the many medications he took daily. But the reality is that life is hard. Life is hard, and people hurt. People hurt even when they try not to. Sometimes we don’t want to see, even when we think we are looking. At 26, my brilliant, compassionate, multitalented brother shot himself in his bedroom. I will always remember on that particular morning, the sun was shining gloriously. Birds chirped, flowers bloomed – a perfect spring day – except it was anything but. After the news, the sun became a hurtful sight. Like someone smiling at you while you’re being kicked.

Even as we laid my brother to rest, no one, other than Neddy, knew I was pregnant. It felt like a secret I wanted to protect from the unreality around me. Through the shock and sorrow, Piper became my salvation. She was the promise of better tomorrows. When we finally did share our news, Piper became everyone’s healing. She was born three days early, on December 18, 2013. From the moment she took her first breath, she was a reverie. So fragile and strong at the same time. I would stare at her endlessly, not believing she was real.

As the first grandchild in Neddy’s family, and the first granddaughter on my side – Piper had a charmed babyhood. She was constantly held, kissed, sang to, rocked. She had more clothes than any baby in the history of babies, I was certain. As she grew, so did our amazement. She was curious, contemplative, confident. She made every new stage look effortless. She was happy and thriving.

Fast forward to the present. We are now 11 months into a terminal diagnosis. Piper has already surpassed the average life expectancy for DIPG by two months. But her latest MRI tells us her tumor is progressing. Which generally means time is short, and the list of options shorter.

If you have met Pip, you know her imagination is the crown jewel of her many gifts. More often than not, when she plays everyone is given a role, and then scripted to her exact specifications. She takes great delight in directing silly mishaps. For example, we could be playing restaurant, hair salon, vet, or school, and she will say “pretend I’m gone. Ring the doorbell but pretend I’m not there.” Following her lead, I’ll knock, ring the bell, pretend to be disappointed and walk away, then suddenly she will appear from around a corner with a giggly grin and say, “Oh sorry I was just in New York” or “Sorry I had to take my daughter to school.” Then the game goes on… different every time, yet always full of Piper’s signature humor.

But I get stuck on those words: Pretend I’m gone. Every doctor, and every case we’ve followed the past 11 months, tells me that soon I won’t be pretending. Five years after I lost my brother, I’m now losing my heart. This cannot be. It should not be. But it is. And the more beautiful the spring days become, the more I worry. Only instead of being blindsided like I was with Alex’s suicide, or Piper’s diagnosis, we are acutely alert to our tragedy. We stare it in the face. All the facts and hard truths are laid out in front of us like a crumbling bridge. Every day we walk forward knowing that any minute the ground beneath could vanish.

I want nothing more than to keep pretending with Pip forever. She is still as fragile and strong as ever.  But now what I think about with disbelief is how we got here, and that DIPG is real.