My thirty-eighth year around the sun became a season of grieving, healing, and learning to live again. For most of my life, I had thrived on busyness. If my calendar wasn’t packed from dawn until dusk, I felt like I was wasting time. But this year forced me to slow down in a way I never imagined.
On October 12, 2019, my daughter Adelaide passed away, just five days before her fourth birthday, because of a neurodegenerative rare condition. Even to say that aloud feels surreal. At nine months old, she was diagnosed with infantile spasms, a dire form of pediatric epilepsy that had stolen more from her little body than I could ever put into words: countless seizures, endless hospital stays, and challenges no child should ever have to face.
We must have visited about thirteen hospitals across seven states, following hope wherever that led. I would have crossed any ocean if I thought it would save her. And as her symptoms worsened, so did the number of failed treatments. My life became centered on her care. I left my career in New York City to be home with her full-time. Adelaide became my compass, guiding every decision I made. And then, one day, she was gone.
When she was alive, I poured my heart into raising awareness joining the board of an epilepsy foundation, starting a blog, hosting a podcast and sharing her story with any who would listen. My husband, Miguel, was playing Alexander Hamilton in Chicago at the time, giving our story a platform I never could have anticipated. After Adelaide’s death, I kept going, terrified of what would happen if I stopped. I filled every hour with something, anything, just to avoid the silence.
But the stillness caught up to me like a train I couldn’t outrun. Our once-busy home, filled with the hum of machinery, nurses coming and going, and Adelaide’s soft breathing, suddenly went quiet. The silence was deafening. I could hear the world outside again: a dog barking, someone taking a shower, footsteps in the hall. Sounds I’d never particularly noticed before now echoed through the emptiness.
Then the pandemic hit.
On my thirty-eighth birthday, some of my closest friends surprised me with a big balloon display outside my window; we toasted from a safe distance, and I drank my way through that day, trying to blur out the ache in my chest. The next morning marked six months since we lost her, and the weight of that realization hit harder than any hangover. That year was far from rainbows and sunshine it was survival.
I used to think that being forced to grieve in the middle of a pandemic was just another kick in the guts. But it gave me, in retrospect, something I would never have given to myself, and that is time. There is a difference between feeling grief and processing it. Feeling grief is like being swept under by a wave-you have no control. Processing it means sitting with the pain, understanding it, and slowly reclaiming your strength.
Without the distractions of my old life, I was finally forced to face my grief head-on. There was no makeup or event to hide behind, no schedule into which to escape. It was just me and my heartbreak. Somewhere in that quiet, I began to heal.
Now, as I enter the new year, I feel something I have not felt in a very long time: optimism. The vaccine helped, as well as warmer weather and the slow return of normal life. But the change is internal. I am not buried under the same darkness. My husband and I made an agreement to drink only when out socially and those are rare. Anxiety still lingers, and there are still days when a nap is necessary to reset, but I can recognize my own improvement and be proud of it. I’ve learned that grief doesn’t go away; it just changes shape. Adelaide is still a part of everything I do. I look at her photos, watch her videos, reread my old blog posts, and talk about her whenever I can. I still cry, but it’s not the same unbearable sorrow anymore. It’s gentler now, filled with love instead of despair. So, here I am now, embracing the idea of my thirty-ninth year. I have been tested, broken, and rebuilt. I know the road up ahead will have its shadows, but I am ready for more light this time-more laughter, more peace, and maybe, just maybe, a little sunshine along the way.
