The idea of a bucket list—a list of things to do before you die—is inspiring for many people. Writing down your life goals can be a fun way to delve into your greatest aspirations, from simple acts of fancy to exotic adrenaline-fueled adventures.
A bucket list for a 5-month-old baby, however, is something else entirely. Reading little Avery Canahuati's list of the experiences her parents want her to have before she's gone is heartbreaking to the extreme, especially when you see items like "swing on my swingset" and "make cupcakes."
It seems impossible that any child would be denied such basic pleasures, and yet Avery's time here is devastatingly short: she's not expected to live past 18 months.
Avery appeared to be perfectly healthy when she was born last November, but a few months later, her mom Laura Canahuati noticed something was wrong. Shortly thereafter, the family had an unspeakable diagnosis: spinal muscular atrophy, SMA Type 1.
Canahuati's reaction was one most parents can probably identify with:
I just started screaming. It just doesn’t seem real.
SMA Type 1 is a rare, incurable genetic condition that limits a person’s ability to move their legs and arms, and eventually robs them of the ability to breathe. Avery is currently 5 months old, and her doctors say, at best, she will get only 13 months more.
Here's a short video on Avery and her family:
Avery's parents have decided to make the most of her final days by creating and chronicling daily memories of life with their daughter. Earlier this month, they created Avery’s Bucket List, a blog that documents Avery's life, shares the family's list of hoped-for experiences, and spreads the word about SMA. Written as if in Avery's voice, the often-funny first-person account of the little girl's life shows that whatever incomprehensible challenges her parents are facing right now, they aren't allowing themselves to be buried in grief while their daughter is still alive:
We can sit at home and we can cry every single day, or we can try to make memories with her. We can watch her die, or we can let her live. And through letting her live we’re going to try and educate other people about this so they don’t have to go through it too.
Michael and Laura Canahuati are hoping to raise awareness for SMA, the number one genetic-related killer of children. They also urge parents to get tested to see if they are a carrier for the disease—according to estimates, one in 40 people are.
In Avery's "written" words,
Don’t forget to share my story with everyone! While it might not help me in my lifetime, the more people who are aware of SMA, the more likely there will one day be a cure for SMA.
As difficult as it is to think about what this family is going through, there's a real beauty in what the Canahuatis are doing by sharing their life in this way. Not only does it help spread the word about SMA, but it reminds us to cherish what we have and never take a moment for granted. When I read some of the items on Avery's bucket list (paint a picture for my mommy & daddy, go swimming, attend a birthday party, go camping & make smores), my heart hurts for that little girl ... and I'm also filled with gratitude for the simple joys my own family has experienced together.
Last Sunday, Avery's parents helped her fly a kite for the first time. She also recently had her first tea party, her first Easter, and blew her first soap bubbles with her parents. Her life may be all too short, but her family realizes how important and worthy of celebration every moment is—and it reminds me to do the same.
Avery's parents ask for help adding ideas to her bucket list—what would you suggest?
Image courtesy of Avery's Bucket List