In June I shared how a Minnesota Vikings' player's decision to build a playground at a children's hospital affected my family. Here's an update.
Note: This has less than nothing to do with Vikings football. It does have a little to do with the Daily Norseman community. You've been warned.
Hope isn't always easy to find. On Sunday Vikings fans had hope handed to us, yanked away, and then restored over the course of four quarters of football. So, while things are ever so slightly more hopeful here at the Daily Norseman, it seemed like a good time to share the hope that can come from a birthday--from Ellie's birthday.
We've been frequent visitors at Amplatz since October 1, 2012 when my niece Ellen Joy, Ellie, was born. As I wrote in June, we had absolutely no idea that anything was amiss with Ellie until the day she was born. For nine months we had not a clue that there was something wrong with her kidneys or that life as we knew it would become a thing of the past. But a year ago that reality came crashing into our lives. After an emergency delivery, Ellie had one of the worst first days of life I can imagine.
Sometimes while Ellie is playing I just look at her in wonder. When she was born, we didn't know if she would live through the night, let alone make it to her first birthday. Seeing her teething on her toys or struggling to shove her chubby, little foot into her mouth is nothing short of miraculous for a baby who needed a rare life-saving procedure (ECMO) that first night to have even a chance of survival
, and then spent most of the first month of her life in the NICU sedated and intubated.
Here and now
Sometimes my family has felt so alone in the struggle to keep Ellie going, to help her get healthy enough, big enough, and strong enough for the kidney transplant that will, eventually, change her life. Fear, exhaustion, and discouragement can do that, they wear you down until you don't know how you'll go on. And that's when we've looked around and realized that we're not alone in this.
Ellie has nothing short of an army of talented health professionals at the University of Minnesota applying their considerable talent to improving her fragile health. Private duty nurses assist in her care on a daily basis. And friends from all over have shared their support and love in ways too numerous to count.
When I wrote about Ellie and what something like the Sullivan Playground means to us, it was mostly for the sake of working grief out of my system and sharing the personal value of one of the Vikings' community programs. But when I published the story the outpouring of compassion and support from our community here at the Daily Norseman overwhelmed me. Perhaps because of the myopic nature of life with a critically ill child, it never occurred to me how our corner of the internet would respond to my story. So many people encouraged me and said they were praying for us that I'm still amazed and humbled by it.
And that's why I couldn't let Ellie's first birthday pass without sharing it with the Daily Norseman community and all those who touched my heart and gave me reasons to hold onto hope and just keep going.
Ellie still has a long way to go. Right now we're stuck in medical limbo, waiting for a kidney transplant and learning about the many ways it can be delayed. But when we look at how far our little long-shot baby has come, it gives us hope.
My thanks to everyone here at the Daily Norseman on this Ellie's first birthday!