A little life remembered


It was just a month ago around 7pm when I was at Whole Foods with the Hubs. Our plans were to get a few things and do some Christmas shopping at the local mall.

We were talking with a friend whom we happened to meet coincidentally over by the deli counter and my mobile phone rang. It was my orange hair, freckle face OS calling. I was certain he needed help solving an argument between him and his brother or maybe it was just to remind us to pick him up a grocery item. But neither were the reason for his call. His voice was heavy and I wasn’t sure I heard him correctly.

“Lilly died.”

What did he say?

I nearly dropped my phone.

I wasn’t sure I had heard him correctly and I didn’t want to misunderstand. I had just checked her mother’s blog that afternoon and although this little baby was medically fragile, there was no evidence that in the span of a few hours, she would be gone.

We aren’t related to Lilly in a family sense but this little girl had won our collective hearts.

Now I’m standing at Whole Foods struggling to understand this news. Suddenly all the Hubs and I wanted to do was speed through the check-out line and return home. Our family needed to be together, the errands could wait.

We walked out of Whole Foods stunned, the winter air had a quiet chill as we placed our groceries in the car. I could feel a whole community of people grieving over this profound loss. A tiny hero had passed away.

So who was Lilly? Lilly was a beloved baby born with Trisomy 18. Trisomy 18 (Edwards Syndrome) is a chromosomal disorder. Only 5-10% of children born with T18 live to see their first birthday. Lilly, aka Miss Firecracker because she was born July 4th, belied the medical community. Although T18 is commonly known as being incompatible with life, Lilly wanted nothing to do with that nonsense. For 17 months, Miss Firecracker bore witness to the fact that every life is significant.

The first time I would meet this precious child and her mother (I already know Lilly’s dad) was at the funeral home. Our entire family, including our OS who was home from West Point, loaded in the SUV to pay our respects.

I wasn’t the only one crying as we walked through the line and I will not tell you which OS also had tears in his eyes.

Dressed in a vintage christening gown with her favorite stuffed toy caterpillar near her side, Lilly looked like a tiny doll. It was necessary to share our condolences with Lilly’s family.

The line grew long as many waited to speak to her parents and offer sympathies and appreciation for loving her so well. Even though it was very emotional, the Hubs, Nate, Aaron, Ike and I had to meet this little girl who had inspired us with her fighting spirit. Lilly gave testimony to a life well lived.

The anticipation of a new baby breathes excitement into a family. But for some parents, joy is replaced with heartache when they learn that their much-loved preborn child may not survive. This book is a wonderful resource.

The anticipation of a new baby breathes excitement into a family. But for some parents, joy is replaced with heartache when they learn that their much-loved preborn child may not survive. This book is a wonderful resource.

As we reflected on the year 2011 and marked the many experiences we have shared as a family, Lilly’s life and her departure to heaven found its way into the threads of our significant moments. I am pleased to say that Lilly’s life mattered to many. Her extraordinary family remains in our prayers and continues to inspire.

Read more about Lilly and her legacy at Pray4Lilly. You will be blessed. Who has recently inspired you? I’d love to hear, please share.

4 thoughts on “A little life remembered

  1. Cindy, what a beautiful write up about Lilly and her beautiful family. I too, had just met Lisa and Lilly at the funeral home. Wish I had known them before. They are truly a testament to how your Faith in God can pull you through such tragedies. I remember all too well that very night. To now see the video of Lilly playing with her animals on her bouncer seat hours before her passing, really makes you wonder about God's plans that day. Frank just happened to have a dentist appt. that day and went home after instead of going back to work. Had he not, he would have never seen Lilly alive again. I still cry when I think of them and what they are going through. They are truly in my thoughts and prayers.

  2. Thank you thank you Cindy for writing about my Lilly! It feels so good to hear other people talk about our little angel. We are so grateful for all the prayers and love and support we've received. A special Lilly thank you card is coming your way. 🙂

  3. Dear L,It was my honor to write about your daughter. I was having lunch with some friends in Bible Study who also go to school with us and they had read your blog as a result of my post. They were in awe of you and hadn't heard your story before. You are a blessing.

  4. I clicked over here from Lisa's blog. I'm am Frank's youngest niece. Oddly enough, I was at the grocery store when I got the news as well. It was a rare trip to the store alone when my sister called. I remember thinking she must be confused because I really had literally JUST read Lisa's post about how well Lilly was doing with this cold (I think written on the same day she died). I feel like I practically screamed at my sister on the phone, although I'm sure I didn't. But she truly was a little hero….and touched so many lives. I have friends miles away that "know" Lilly and DIDN'T hear about her through me….but through the many many Christians around the world that she brought together.

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