The New York Times honored Miss Evan

Commemorating our magical daughter, Evan, with a Tiny Love Story, her favorite books, and songs in honor of her anniversary

I’ll try to keep this as short as a Tiny Love Story. But I’ve never been known for my brevity. Today marks the anniversary of Miss Evan's passing.

Technically, I’m writing this sentence a few days before the actual date. But I figure it might take some time for me to wrap my head around those words... You know — like a lifetime. By the time this has been posted, my husband and I will be off to the Malibu Pier. Miss Evan's favorite spot. We took her often. Before her cochlear implant surgery. And the many days, weeks, months, and few years after. During which she could hear the waves crash and feel as at ease as any mito kid can.

We held Evan’s memorial service at the Malibu Pier, followed by lunch at Malibu Farm. Another Evan tradition from our weekends. (My husband and I would eat eggs between feeding Evan via her gastronomy tube. No matter if people looked. Let ‘em.)

Before Evan’s celebration of life ceremony, I nursed my newborn son, Reid, in a private tent we’d set up for privacy. He was only four months old at the time. Between the tent, sunscreen, and a floppy hat, we attempted to shield Reid from the blaring sun during the service. But it got the best of my little lobster. I blame my cousin, Arielle, who’d been tasked with holding him while we spoke and sang songs. (Just kidding, Arielle. We don’t blame you. Blame the parents. Always.) Our pediatrician, who was present, told us not to worry about Reid’s tiny temporary tan. Even though, our family knows firsthand there’s so much one can worry about in life. And — sometimes — only so much you can do.

When Evan was diagnosed with a terminal rare disease, we did everything in our power for her. It’s the only reason I can rest easy at night. We truly spent every day of Evan’s life trying to make her smile despite the unfair hand she was dealt. So now our family surrenders to circumstance. And, occasionally, to sadness. I hope to one day find a way to make things right. For her. For kids like her. For families like ours. In the meantime, we continue to write Evan’s name in the sand and sky. On social media. Or in traditional media. Anywhere that will print her beautiful name and face.

For three years, ever since Evan passed away, I’ve been writing and submitting Tiny Love Stories to the New York Times’s Modern Love franchise.

Two weeks ago, Evan was featured.

I wish I could claim I’d planned for the pint-sized piece to run pegged to Miss Evan’s anniversary, but it was simply luck, perseverance, and the magic of Miss Evan. The column’s famed editor, Miya Lee, pulled Evan’s story out of a slush pile. And the timing couldn’t have been more perfect. I wrote:

I never knew I would miss gastronomy tubes. I never knew I would miss syringes. I never knew I would miss gauzes. Needles. Around-the-clock medications. Blood work. Endless hospital stays. Doctor appointments. Seizures. Electrocardiograms. Your cochlear implants flashing in the dark. Nearly four years of fight or flight. I knew I'd miss your melodic giggle. Your bubbly cheeks. Your flawless newborn baby skin. Your mischievous spirit. Your twitching feet, hands, face. The unwavering presence in your eyes. The forgiveness offered in your smile. I always knew I’d miss you. I now know that includes every piece of you.

I’d submitted the piece at the beginning of March; then completely forgot about it until I heard from Miya a day before it ran.

She trimmed the original submission a bit — and selected a beautiful photo of Miss Evan clad in her purple J.Lo-inspired jumpsuit.

I showed Reid the Tiny Love Story, and he happily exclaimed, “It’s my sister!”

He knows Evan well. Or at least as well as any three-year-old who was three-months old when their sibling passed away.

Reid is now three years old. He’s Evan’s eternal age. Although, she would technically be nearly seven this year. Surreal. On every level. Each year, we honor Evan by singing her favorite songs and reading her favorite books in Malibu. Reid used to come. Now he’s in school. But we’ll continue the tradition. In both of their absences.

To anyone else who may be grieving, I recommend writing Tiny Love Stories, which are 100 words or less. You don’t have to submit it to the New York Times if you don’t want to, but I find it always feels good to honor loved ones with words on a page. (Tiny Love Stories are also an incredible writing exercise. But if you’re not a writer by nature, don’t sweat it. Just speak from the heart and you might surprise yourself.)

How much can you say with so few words? As it turns out, plenty. Miss Evan never spoke a single word. Yet her impact is sizable. I’m sure there’s a Tiny Love Story to be written about that. So, I’ll hold tight on exploring the thought. For now.

In the meantime, we love you, Evan. And we honor you every day. But especially today.