During all my years as a nurse I have never witnessed a more amazing group of dedicated professionals than those in the St. Louis Children's Hospital Heart Center.
Our only child was born via IVF in 2010. She was a much prayed for blessing who lit up our lives. At the age of six months old, two days before Christmas, a fever and wet cough led to a chest X-ray in the ER. Our lives changed forever when we were told Layla's heart was significantly enlarged. I worked cardiac, I knew what dilated cardiomyopathy was.
There are many things I will remember and learned from our last visit to Children's. Mostly I will remember the final day. I will remember Dr. D coming in on his day off, a Sunday morning, before he took his own children to Sunday school to be with us when we stopped the meds and pulled the ventilator....knowing it was like coming full circle as he was there the very first night of this journey.
I will remember Alli. Oh Alli, such a difference she made. She was only with us the final two days but she was placed there for a reason. Words cannot express the compassion she showed. Alli stopped the IV meds, Alli pulled the breathing tube and Alli cried with us like she had known our daughter forever. Like she knew her as the spunky smiling girl we did. She knew how much she was loved and how she will be missed so terribly.
At a moment in time that will be forever ingrained in our hearts...Alli will be there.
I had mentioned in passing at one point that my daughter always preferred to be on my left hip and over my left shoulder. When she took her from me for the last time, Alli said "she liked the left shoulder, correct?" She placed my most precious gift over her left shoulder and walked her down to the OR for organ harvesting. Watching Alli walk away with my sleeping doll over her left shoulder, snuggled in a blanket was a moment that cannot be described. Unbearable grief yet blessed and full of gratitude.
This was not how my daughter's story was supposed to end, but as usual, she had her own plans. Her time here was brief yet poignant. She was so loved by so many. She lit up the room with her smile. She taught many lessons to all who met her...whether to be a better parent, to not sweat the small stuff, to appreciate every little accomplishment or to fight like crazy with a smile on your face. Some people live 80 years and don't make an impact. My daughter did it in just 4.
For us... Alli did it in 2 days. Our gratitude is unending. Thank you Alli, from the bottom of our broken hearts. You made a difference. You made the end of this journey a little more bearable...a profound accomplishment by simple gestures that will stay with my family forever. You should be commended for your dedication and amazing care during the most difficult time of our lives. You will never be forgotten.