I don't know how exactly to start this post. Yesterday I read, for the first time, about Avery. She has SMA and is terminal. Her parents have to watch her precious body slowly shut down. She wasn't supposed to make it to two years. Her dad started a bucket list for her and it went wide! I read the blog post about her and I could relate; watching your child gain and lose abilities, living in the moment because what may be coming next will break your heart, surrounding your family in love and teaching others about your life and those of others in similar situations.
And then today I read that, just three days after a thumbs up doctor visit, just 15 minutes after her smiling picture was taken, her lungs collapsed and she died. Her father posted a loving letter "by" Avery. I didn't know about this child until yesterday. Not that her story wasn't compelling, but I've read a thousand of these posts and I live it everyday so as much as I felt for this family I wasn't affected that much. Until I read that she so suddenly died. I wanted to scream. I wanted to break down. Not for only this child and her family but more so for my own.
Scarlett has been having some issues lately and she had a close call last week. Not 911, hooked up in the hospital, close call. But suddenly there I was on the side of the road, three year old strapped in his seat watching everything, praying that this wasn't how it was all going to go down. She's fine now but the whole situation jarred me to the core.
Conversations lately with separate individuals have centered around Scarlett's "pending doom". Doctors have started asking about DNRs again ( we went in for antibiotics not anything that serious). Coupled with my previous feelings, this all makes me nervous. But it also leaves me with the question of whether the universe is trying to tell me, warn me, of what's coming next or are theses comments and situations happening because I'm putting that feeling onto others who are simply reinforcing what I'm thinking? Food for thought.
Reading about Avery has left me with a new perspective. Her father, Michael, has been quoted as saying, “We can watch her die, or we can let her live.”. I want to watch Scarlett live. It's a hard, fine line to travel as I am always required to be on guard for every symptom, sign, and compiling evidence that she needs help- to ignore the smallest thing could impact her health greatly. It's always like I'm looking for the worst, waiting for her to die (waiting, not wanting) because her health degrades so fast. Reading today what Michael said clicked for me. I will not ignore Scarlett's overlapping issues but I will try to see past them, see the child through the complications, and love her to live.
The suddenness of Avery's passing reflected my own fears about Scarlett. Her father has unknowingly affected me with his words and his courage in the most devastating time in his life. I hope that, even though never actually meeting his precious Avery, she has changed not only my view on life but those of others too. Thank you Michael and Avery for inspiring me to be better for my daughter and for my family.
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