I remember walking by, on those rare occasions I left her side, and seeing this precious little one with the dark, coal thick hair and the tubes and wires from her body and then seeing her mother in the same chair I sat in catty corner down the hall. Her mother had the same beautiful hair and the same look over her child as I did.
I had heard a few things of their story here and there and wanted to connect for some reason. I'm not sure why really because back then I was real guarded of making new friends while our girl lay in a fragile state. One day the opportunity presented itself as we were seldom out of our rooms and especially not at the same time. On the PICU floor especially you are isolated for health reasons, yet isolated from what feels like the world at time in your room for another.
When we met I do remember how we both had wanted to hear one another's stories as we had both heard about our children and their chronic illnesses that were baffling doctors.
Over the weeks, the months, and soon what became years, this mother and I shared many moments together. From happy milestones and small wins for our baby girls fighting their battles to the fears, depths of pain, struggles with "living" in the hospital, to adjustments at home, with friends and family. We had many late night talks about having chronically ill children and what that carries with it. We had those hard talks of what to do when, wha to do if and how to do this or that.
Our girls, although having different transplants, different reasons for them and different chronic needs, what was similar was how the two very sick little girls stayed resilient and have been teaching the world- quite literally-about very rare medical issues, paving the way in the medical world and capturing the hearts of so many and so many we may never even know.
Not only did that mom and I become friends, our whole families did. We'd keep lightly in touch between hospital visits and keep up with one another's posts, get together outside of the hospital when we could ( depending on who had what "bug" at the time). We celebrated birthdays as we treasured each passing year.
Time was not always good to us, yet we made it work for our chronically ill worlds. I felt like we had quite the dynamic duo forces amidst us: Emi and Eme (Emily and Emerson) and Erika and Erin- The resilient warrior princesses and their advocate warrior moms. Two different causes, two different rooms, two kinds of illnesses, two unique stories, yet our missions the same: to teach through our children, to love them to the fullest and to provide the best quality of lives for our daughters.
And now- within what seems like a blink of an eye- one of our late night talks has become reality.
Emerson Nicole White died November 15th at the tender age of 13.
I felt honored to talk to Erika that night as she shared with me of what finally occurred and now as I weep and wrestle with her loss my heart aches for Erika and her boys as their hearts are shattered into pieces that may never be repaired.
I feel as most must in this situation, compelled to do something yet knowing nothing I or anyone else could do can ease their pain. I realize it is for selfish reasons I feel the need to help as it may bring me some comfort to feel as though I am doing something. I know despite the emotions I am feeling now they can never be enough to help our dear friends we met over a decade ago in this chronically ill world where transplants unite us forever.
There are a group of mommas and their families we met all around the same time and have remained friends and share our own stories together for another time, yet I treasure each one dearly.
If you haven't heard in years past of our friend Emerson, please go to her Hope for Emerson page and see her story. It is not only remarkable, it is rare and she is beautiful- a life size porcelain doll we will treasure in our hearts forever.
https://hopeforemerson.com/
