Light, A poem by Hugh O'Donnell

"My little human, 

down what centuries of light did you travel to reach us here, 

your stay so short-lived;

In the twinkling of an eye you were moving on, 

bearing our name and a splinter of the human cross we suffer; 

flashed upon us like a beacon, 

we wait in darkness for that light to come round, 

knowing at heart you shine forever for us."

I first loved Celeste in the summer of ‘19, a full year before we would know of her diagnosis. You see, a parent’s love for their child is one of promise for the future and so when Sarah and I succeeded at raising our first child all the way around the sun, we decided we could handle another one, that’s when I first loved Celeste.

We wanted a second child and in wanting her, we dreamt of her.

We dreamt of Sylvia as the big sister. 

We dreamt of us as the tired parents, bedraggled from sleepless nights taking turns sleeping in short fits while caring for an infant and a toddler.

We dreamt of our family of four cramming two car seats into our car for long rides out into the mountains to camp.

And we debated, just as we had for Sylvia, on what our little one would be called. A thousand names were proffered and a thousand rejected until there were two names. One for a boy, and one for a girl.

And then, the first good news, our baby was coming.

And then, the first bad news, COVID was not going to let this be a normal pregnancy. For the first few appointments they told me that I could not come because it wasn’t safe. My heart still breaks for the expectant fathers and partners that are denied this first glimpse of their child.

We made the most of what we could do. Sarah had us hiking a different trail every weekend. Since people were staying home, the air was cleaner, the trails a little quieter and we thought “This is different, but in it’s own sweet way, it is better for us.”

And then more bad news, followed by more bad news, and a series of tests and a spiral of despair ending in confirmation that our beloved baby would never leave the hospital alive. But this was not the end of Celeste’s story.

I won’t lie and say that things were easy or that I accepted things right away. We struggled through a lot of tears, a lot of sleepless nights, and a lot of despair in those days right after the diagnosis. But Celeste did not. 

Celeste kept growing and stretching and listening and punching and kicking Sarah, just like she should have. For Celeste, there was nothing wrong. Life continued for her as it always had, warm, safe, and loved.

And in time, with so much help from our friends and family, we were able to adjust. We were able to plan to make the most of our time with Celeste in spite of all the limitations. Celeste still went on many family hikes, got lots of family snuggles, had books read to her, played with her sister, got to meet her grandparents and so much more, all within the comfy confines of her mobile studio apartment. 

And when we were nearing the end, when we set a date for her induction, we gave her one more big weekend filled with family, swimming, hiking, and getting tattoos all over her momma’s bump. 

Our time in the hospital was longer than our doctors expected, but peaceful. We could listen to Celeste’s heartbeat and celebrate that she was still with us while we waited for her birth. Eventually, time was no longer on our side. Things had progressed slowly and now there was a further complication. Sarah and I were warned that we may hear Celeste’s heartbeat stop, so we knew we had to make the most of our final moments with Celeste.

As her heartbeat slowed, her mother and I played her playlist, told her how proud we were of her and that Jesus would take care of her. We told her that she would always be loved and always be part of our family. We told her that her Grandpa Lou and many other family and friends were waiting to meet her and keep her company in her new home. And we told her that it was okay to go. 

Celeste died the way that she lived, surrounded by love and family and the prayers of a great many people who honor her by remembering her. Celeste was here.

And now she is somewhere else. Somewhere where she will not suffer for being made a little different.

We cannot thank all of you enough for being with us and for helping to keep the brief life of Celeste meaningful, remembered, and treasured.

I want to end in talking directly to Celeste: 

Celeste Louise DeMaio, we did not start loving you when you were born. We won’t stop loving you in death. You have taught us so many valuable lessons about hope, love, life, and acceptance. Thank you, for choosing me to be your dad. I have loved you since forever.