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| I "stole" this from "Lucy" (aka Helen B) because I was so moved by it. My apologies for note seeking permission beforehand
Victor Alvarez, Official SMA Angel
After the rather emotionally-charged post about Nathan and Ali last night, I thought surely my eyeballs were all dried out.
And then I learned this morning that Victor Alvarez, one of the remarkable young adults in the SMA family, had earned his wings a few hours earlier. It’s been a full day, and I haven’t had a chance to ponder it much, but the news left me stunned and saddened… not for Victor, but for the earthlings left behind.
Victor’s story is no less compelling than Nathan and Ali‘s, although it’s a different kind of love story. One of his dedicated caregivers, Elizabeth Gearhart, wrote a book with Victor (VICTORious Life); here are a few excerpts:
Victor was born in 1986 in San Luis Potosi, Mexico. One day, when he was about 18 months old, he stood up on a bed, stumbled, and fell to the floor. He never tried to walk again…. His father thought he was just lazy….
For a time he lived with his grandmother and grandfather, and his grandfather tried to straighten his frail crooked body by tying him to a board….
* * * * *
During a lengthy hospitalization, the doctors informed Victor’s mother that he would soon die, but that he could go home to do it. She couldn’t take care of him, though, so he was transferred to Comfort House, a hospice facility in Texas. Where he didn’t die. He was fitted for a wheelchair and had rods placed in his spine, leading to better health and school(!), where he excelled.
…. From age 9 to age 15, he lived with more than 500 people who entered his life and then died.
* * * * *
Victor was adopted, and an unbeatable caregiving staff was set into place. He was a stellar student from the get-go; by the time he was ready for college, he’d been named a Bill Gates Scholar. He was a poet, artist, newspaper columnist, and public speaker, as well as being an inspiration to many, particularly SMA families frantic for proof that their children could grow up to be productive, happy adults. That they could grow up, period.
The National Hispanic Institute sponsors major leadership development events for Hispanic youths, including the weeklong Texas Lorenzo de Zavala Youth Legislative Session. Victor not only attended in 2004, he was elected governor(!) and spoke:
…. In essence, I challenge you to believe in your potential. Use your creativity, your intelligence, and your energy. You and I have the power to change ourselves as well our communities and even the world.
Be proud of who you are and where you come from. That is the essence of what makes all of us strong and connected to each other.
In 2007:
…There are times when we have to ask ourselves, “When I die, what do I want my obituary to say about me?”
I know what I want mine to say. In fact, I wrote my own obituary for an English class when I was about 14. I know that when I die, I want to be remembered for doing things for people, for helping others, for having a voice, for making a difference, for taking the road less traveled as Robert Frost says in his poem.
Victor was, as they say, an old soul. He wrote several years ago (in VICTORious Life):
Death
Promising, swift
Comes at anytime ready or not
Peaceful, scary, awkward and joyful
Chilling, comforting, warming and trying
A guaranteed event for all awaits!
Victor had a great day yesterday and died while watching a movie with his caregiver. The probable cause was a heart attack… a twist of irony after the latest medical announcement linking SMA and heart problems. His death was promising, swift, peaceful, and no doubt comforting, and it came whether any of the rest of us was ready or not.
I believe Victor was ready, and I believe ‘joyful’ doesn’t begin to describe him now.
Fly high, Victor, and thank you.
Lucy
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