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.
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.
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.