“Get busy livin’ or get busy dyin’.”
–Tim Robbins as Andy Dufresne, “The Shawshank Redemption.”
Isn’t that what it really comes down in this life?
Time is infinite, sure. But it is also finite in the purest sense. One of the few absolutes in life is that there are just 24 hours in a day. You start at Point A, you end at Point Z. The day begins, the day ends. What are you going to do with that time?
Michael Canahuati knew what to do. Then again, he didn’t have much choice.
In early April, Michael and his wife Laura learned that their daughter, Avery Lynn, had a genetic disorder, spinal muscular atrophy [SMA]. There is no cure for SMA. With time, Avery would lose the use of her arms and legs. She wouldn’t be able to sit up on her own. Her ability to breathe would eventually cease. If Avery was lucky, she might make it to 18 months.
The theme of this blog is right on the front page: Fatherhood And Its Absurdities. And as a father, you learn a lot about what “absurd” means. Much of it is humorous; just now, as I am writing this, my three-year-old daughter has her foot caught in the handle of a bouncy ball, while my 19-month-old girl is putting Cheez-Its in her hair. This is definitely absurd.
But there are some absurd things that aren’t funny in the slightest. And could there be anything more absurd than finding out your daughter is dying? And of a condition that you had never heard of, and which you could do nothing about.
Only Michael and Laura did choose to do something. They chose to get busy. And to get Avery busy living.
By now, it’s likely you have heard of Avery’s story. Almost as soon as Avery’s parents got the SMA diagnosis, Michael got online and started the Avery’s Bucket List blog about Avery. Michael told about the particulars of SMA, and what would happen to Avery. Only, instead of playing the role of a grieving father, set on watching his daughter die, Michael took on the voice of Avery and she started living.
What Avery “created” was a bucket list of things she wanted to do and experience while she was alive. You name it, and it was there.
–Get a kiss from a boy? Check.
–Make handprints for mommy and daddy? Check.
–Take tour of a college campus? Check.
–Get a tattoo. Check [Don’t worry, it was fake.]
–Throw out the first pitch at baseball game and have a crowd cheer for her? She did that on Friday, April 27th for the minor league Sugar Land [Texas] Skeeters. The team even won the game, its first ever.
For nearly a month, Michael, as Avery, updated her bucket list nearly every day, crossing off items as Avery accomplished them. More visitors took notice and would send in photos of their children doing things for Avery from her list, or making arrangements so Avery and her mommy and daddy could do them. The site went viral, and even President Obama and the First Family sent Avery a photograph and words of encouragement. As of today, it has more than 5 million site visitors.
But even though Avery’s bucket list had been going for almost a month, I just found out about it on the morning of Monday, April 30. As my instant messenger program came to life that day, a new browser window opened and I noticed a picture of a baby girl. The link below her photo said something about a baby’s “bucket list”. I clicked on the link.
I immediately went to the site, Avery’s Bucket List. The photos of Avery and her tone and attitude, by proxy of her daddy, were overwhelming. I started to cry, and without any bit of exaggeration, I have hardly stopped crying since.
Call it corny if you want, but when you have children, your perspective on everything changes. I get worried when one of my daughters, whom here I call Maddo and Little Sis, tries to climb on the back our sofa. I can’t imagine the shock and pain Avery’s parents felt when they learned about Avery’s condition. You don’t think about our kids not being around; you think about you being around for them. You want to do everything you can for them.
And I wanted to learn everything I could about Avery and what seemed to be a superhuman level of courage, positivity and love that her parents had for her.
“Mike always told me we’ve got all the time in the world to cry,” said Avery’s mommy, Laura, in one interview. “We can cry when she’s no longer here but for now we want to try to enjoy the time we do have with her and make memories.”
“We can watch her die or let her live,” said Avery’s daddy, Michael.
I planned on keeping track of Avery for as long as she was alive, hoping she would make it at least to her first birthday party. I even offered to help cross one of the items off her list, by inviting her to Little Sis’ birthday party in September, and said she could have the first piece of cake.
The next day, May 1, the first thing I did was check out Avery’s bucket list. There was the posting about, and some video of her throwing out that first pitch of the Skeeters ballgame. Avery’s parents guided her, and the ball, to the catcher’s glove. I don’t even think Felix Hernandez could have thrown a more perfect strike.
I then went about doing some things at work. About two hours later I went to Avery’s bucket list and this is what I read:
Avery Lynn Canahuati 11/11/11 – 04/30/12
Avery died the day I first learned of her and her incredible parents. Apparently, one of her lungs collapsed. Her daddy was able to revive her for a while, but she then passed away shortly after her parents got her to the hospital.
As I write this, a week has gone by since Avery passed away and I still can’t visit her site, or think of her, without breaking down. I also can’t believe what kind of guts it took Michael Canahuati to get up the morning after his baby girl died to tell the world that she was gone, and to pass along a note that was from Avery, one which she made him promise to not open until the time was right.
You can read the note, and all of Avery’s blog at averycan.blogspot.com, but I’m going to include it here:
Dear Mommy & Daddy:
If you’re reading this it’s because I’ve gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents. I love you veeeeeeeeeery much. Also, tell Nana & G-Pa I love them too. In fact, tell everyone who loved me that I love them and I appreciate them caring about me.
When I started writing my blog, I thought I’d only be speaking to my closest friends and family members. Little did I know soooooooo many people would care about me and while I’m flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.
You see, I’d never heard of SMA prior to being diagnosed with it, yet there’s thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene. Without awareness and without a cure, I’m afraid more of my friends are at risk to have their lives drastically shortened by SMA. When people think of me, I hope they’ll also think of all my friends who have been through this and who are going through this now.
But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future). And they can do so by spreading awareness and helping to fund a cure for my friends.
To all my SMAns, you followed me, now please follow all of my friends.
Mommy. Daddy. I love you every bit as much as you love me. And while I’m not here physically, I will forever live in your minds, as you will mine.
Love always, Avery, Aviator, Aves, Scuttlebutt
Feel free to break out the Kleenex. I am, again, just writing this.
In his note, never once did Avery’s daddy say she died. She passed away. Somehow, that seems a bit more appropriate for this little girl whom, I truly believe, is still with her family and will inspire others from here on.
I feel almost ashamed about crying so much for Avery over the last week. She wasn’t my daughter, and I only knew about her for a day before she passed away. Whatever I, and many others have felt, can’t be anywhere near the pain and sadness of her mommy and daddy.
But the reaction to Avery’s story that I, and I know millions of others have had, is testament to the power of how someone, in such a little amount of time, can impact your life when you least expect it.
Michael Canahuati goes on to say he intends on keeping a promise to Avery to remain an advocate in raising awareness about SMA. He then asks that we all help to complete Avery’s bucket list:
“I hope parents of children everywhere will look at Avery’s Bucket List and help her complete items she was unable to. And when you do, take pictures and send them to Avery’s Bucket List so we can show the world and continue to share Avery’s message.”
I believe Avery’s message is also one of hope. And as Andy Dufresne also said in “Shawshank”:
“Hope is a good thing. Maybe the best of things. And no good thing ever dies.”
Michael, if you and Laura read this, I hope you know what kind of inspiration Avery is. And when my daughter has her birthday party, we will hold a place for Avery and that first piece of cake will be hers.
Get busy living. For Avery.
I don’t shill for too many causes, but this is one I will happily be shameless about.
–One of the top items on Avery’s Bucket List is to be on the Ellen Degeneres show. You can email Ellen here and request Avery’s mommy and daddy be on the show and tell Avery’s story.
–An anonymous donor has made a matching pledge of $500,000 to Dr. Kaspar’s SMA Gene Therapy, a program working on advancements toward a cure for SMA. It is affiliated with The Sophia’s Cure Foundation, a non-profit charity. All donations are tax deductible. Avery’s family is working to raise $1 million for the gene therapy program.
–Donations can also be made in Avery’s name to Fight SMA. www.fightsma.org.
And again, follow Avery and her parents’ journey at averycan.blogspot.com
On Twitter at https://twitter.com/#!/AveryBucketList
And on Facebook at http://www.facebook.com/AverysBucketList