How we live…

Life isn’t about how we die, it is about how we live.  Our death is one day in our history, to be remembered only for that one day would be a lost legacy.  When death comes and we succumb and our body no longer wants to breathe… and our soul heads off for heaven the most important part of it all is how we lived.

Every day we all encounter extraordinary people.  It is a given.  I feel like I often times get to know and love a larger number of extraordinary people and kids… or maybe I am just good at recognizing ones living life well.  I love the kids I meet at the hospitals, the families I work to support and the people I meet all along the way.  Every person, especially the kids who have been or are sick, become a part of my being- their colorful webs are woven into mine.  I love the beautiful fabric God is weaving.  All of those extraordinary kiddos and their colorful threads are part of my being, my fabric.

How we live says so much about us.  When we lose someone, we must remember how they lived…

Ana Dooley passed away last week.


One day last week Ana died.  She lived for the previous 5,000ish days.  Ana was a musician, her voice reminded me of a classic rock singer.  She sang so smooth and maturely, with no fear or anxiety in performing.  Her body moved with so much grace, a kind of musical grace.  The different genres of music she sang impressed me- from The Doors to Christmas music, not a common voice or talent.  Ana was an artist.  Her mom shared some of her work and it made me wish one of my girls had been born with that talent.

I remember when I took on Ana’s Bucket List adventure- a new bedroom, and I realized that pleasing a teen is so.much.harder than a child.  I was reminded that I am far away from teenage girl life, and had to pull in the help of a friend to design to her standards.  I had never heard of ‘Hipster’ style and could not figure out why anyone would want a platform bed (I stub my legs on everything).  I was so nervous that she would hate it when she walked in, but she didn’t.  She loved it.  It was unique and personal, with quotes and polaroid’s and record covers.  I didn’t know how much it would mean then, but it became her sanctuary, her space.

Ana was a normal extraordinary daughter; her mom gives me pointers on teenage girl life.  She struggled with normal friendship issues, and had two best friends that lived along with her these last few weeks.  Ana and her sister Emily had a regular sister connection, with much closeness these cold and snowy past few weeks.

Sunday I got to visit Jackie, Ana’s mom.  I listened to stories about her as a toddler and music in her life as she grew.  Ana was an independent chica… even in toddlerhood.  Her parents reminisced about a tantrum she had when they carried her upstairs around 18 months.  They could not determine why, until they walked her back downstairs- only to have her climb the stairs alone and go straight to bed.  I quite love that  I may or may not have a lot of that in me too…

Ana lived right up until she couldn’t live the way she needed.  Her illness and tumors would have knocked a grown person to their bed, but not Ana.  I talked to her mom as she took Ana to dances, lunch dates and Birthday parties- things she should have been too tired for.  Instead Ana chose living.  She wanted to use her 5000ish days the way she wanted.  In her own way, she compared the cost of enjoying time with her friends or family with the pain it would pile on later.  She performed solos and recorded music with huge tumors in her lungs… with the smooth beauty of her soul.


lovely Dooley's
Ana and her Momma.’


Ana was a beautiful and smart teenager.  I will forever see her eyes, those just like her mom’s.  I will hear her voice as she sings a beautiful version of Stevie Nicks “Songbird”.  I forever remember getting to fulfill one small wish for her, a gift from Madeline and Kara Mia.  I will remember the way she lived her 5000+ days.

I don’t know why we get the piles of hard stuff that we do, but I do know that what we do with it means so much.  I don’t know why life is long for some and short for others, but I know that it is important and profound to live what we have the best we can.  Ana is an inspiration, a reminder to spend our days in the best way we can.  Death is only one day of our story… Ana lived for so many days… she only died one of those days.

Please know her, connect to her.  See her live and perform.  Remember her way, her light.  Watch her song, and help her family go through this…

If you can donate… please help Jackie and her smaller family get back to living…


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