“Some people come into our lives and quickly go. Some stay for a while and leave footprints on our hearts. And we are never, ever the same.” – Unknown
She was born on Thursday, July 12, 1990. Today she would have been celebrating her 23rd birthday, but instead died two days shy of turning five months old. She was my sister Emily Anne and her life and death is the most defining moment in my own life. It was when everything changed.
The real miracle of life is that each and every one of us makes an impression on this world and impacts it and one another in some fashion. Although Emily was only with us for a short time, she left an indelible mark upon not only my family, but upon friends, acquaintances and strangers who may have only heard her name prayed about in church.
I was only 11; my brother not yet nine then. That Thursday, I was teaching a safety class to kids. When a close family friend came to pick me up after class instead of my parents, I learned the sister I’d always wanted had been born, weighing just 2 pounds, 14 ounces. I was elated, but things weren’t quite right. Emily was about ten weeks premature, sick, in an incubator and breathing with the help of a ventilator. She was given the Sacrament of the Sick multiple times in her short life. It would seem that every time Emily made leaps and bounds of progress, a short while later she’d suffer some major setback.
A few days after she was born, tests revealed that she had Down Syndrome. The news of this didn’t make a difference to me. If anything, I was more defiant and protective. Since the day of her birth, I promised myself that when she grew up, I’d defend her every step of the way. This new revelation only made that determination more resolute.
When she was sick, my brother and I were allowed to visit as much as we wanted. When Emily’s health improved, our visits were restricted to Sundays. Sometimes I elected not to go to the hospital and all these years later, the self-blame and judgement has slowly begun to dissipate and I’ve started to forgive myself for the decisions made by a frightened 11-year old girl. The nights my brother and I had to spend at a neighbor’s house I called “The Terror Nights.” I guess we all spent much of those five months in a constant state of terror, haunted by the fear of the unknown.
Even in the most extreme and harrowing cases, mankind demonstrates resilience and proves that we can fight like hell to survive and thrive. But, sometimes the struggle becomes too much or there comes a time when we just don’t want to fight anymore. On December 10 of that same year, Emily decided the fight was over and she slipped away into the night.
Adolescence suddenly became a lot harder. Support from friends was strong at first, but faltered. I was different because I had a baby sister who died. Every single belief or thought you ever had is suddenly challenged and tested and my religion was no exception. My own parents’ faith was admirably steadfast throughout. They’d put Emily’s life in God’s hands.
My child’s mind saw it differently. At 11-years old, I wrote this in a journal: “I was upset because we’ve been praying to God for a long time to bless our family with another child. And now that we have our Emily she is on the verge of dying. How could you possibly trust God when something like this happens?”
As I write this piece, I realize that for the first time, I’m sharing a story that even those nearest and dearest to me haven’t really heard. Sure, they know I had a sister named Emily. They know she died and didn’t live very long. But beyond that, how do you sit down and tell someone the details? That’s not very easy. I think I harbored many of these details and buried those emotions away from everyone, including myself. My sister’s death is the deepest loss I’ve ever felt and truly cut to the core. After that, nothing was the same and could ever be the same again.
What I know for sure is that now Emily’s with me every day. I imagine her to be as stubborn and precocious as I am and have no doubt that she is, since she was so strong-willed in life. And I think our roles reversed. Just as I made a promise that I’d defend her after she was born, she is now the one who’s standing up for me, supporting me every moment of my life. I’m grateful to know that she’s there in my corner.
Happy Birthday, Emily!
Sara, I have known you for a long time and yet I know so little about Emily. I can’t even begin to imagine what you’ve gone through but to say (as you’ve said) it was life changing. I am so happy you shared this story.
Thank you for your comment and for reading. I think that’s why I ended the piece the way I did because it’s not something that I talk about much. But I promise, it will not be the last you’ll hear about Emily!
I lost my baby sister when I was nine years old, and I now have a baby with Down syndrome. I know that self-blame and the confusion. You write about it beautifully, I’m glad to have found you.
Thank you for your lovely note and thanks for reading! It’s reassuring for me to know that there are others who understand and who have gone through the same. My best to you and your beautiful baby.
It is uncanny that I found you, really, I just blogged about my sister’s death very recently. It was very cathartic, as I’m sure this was for you. Thank you for the kind words, look forward to reading more of your writing!
You are a courageous writer for sharing such a deeply personal life experience for others to be encouraged and inspired. Your journey has left an impression on my heart. Emily lives on!
Wonderful to hear from you! Thank you for encouragement and your kind words.