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Stormi weather calls for continued perseverance amidst adversity Nancy Alvarado | Sat, Jul 18 2015 12:00 PM

The problem with being 42 inches tall is that’s what people notice first. You might miss Stormi’s long silky hair, flawless skin and perfect makeup if you’re only looking at her tiny stature and bent body.

If you only see the thin crooked legs that struggle to support her, you might miss the colorful tattoo on her ankle. If you only see her clenched twisted hands, you might not notice that she’s taken the time to adorn her slender finger with a silver ring.  You might pretend you don’t see her at all.

The problem with having Multiple Pytergium syndrome is that the recessive genetic disorder is so rare Stormi can’t go to the doctor for a simple ear infection without being poked and prodded and left feeling like a lab rat. She weighed 12 ounces at birth and wasn’t expected to live past age 8. It was believed she would be profoundly retarded. She has already had 14 surgeries.

Stormi hides the webbing around her neck and ears with artfully arranged hair.  She can’t hide the contracted muscles and restricted movement of her joints though.

The problem with wearing a size 1 shoe is that there are no cute sandals or high heels in that size. The problem with having rocker-bottom feet is that even if such shoes existed, Stormi couldn’t wear them.

The problem with being disabled in high school is that while everyone wanted to be Stormi’s helper, stealing a few minutes out of class to accompany her to the bathroom or to her next class, no one wanted to accompany her to prom.

Three years later her expensive prom dress, carefully chosen and extensively altered, sits, never used, in her closet.

On good days she ignores it; on bad days it provokes tears.

The problem with being 22 is that while other people are moving out, driving, starting careers or falling in love, Stormi can’t extend her arms enough to wash her own hair or change her own socks. As her siblings and friends take steps toward independence, Stormi is stuck in a netherworld, in many ways more trapped than when she was a child. “Never,” she says, “have I felt more disabled than I do as an adult.”

Some days these problems are enough to keep Stormi in bed.  Some days constant unrelenting pain and the dread of struggling through basic tasks are sufficient to make her say, “I just don’t want to do it today.”

Most days though, Stormi gets up fighting.

Many of the struggles she faces are common to girls her age: coming to terms with body parts she hates or deciding whether she’s brave enough to post full-body selfies to her Instagram account. Although she abhors shopping — an awkward and exhausting workout for her and her mom — she creatively turns extra-small tank tops into amazing dresses appropriate for going clubbing. She studies at the Art Institute of San Diego and donates her artistic and graphic design skills to a local church.  She strives for as much normality as her body will allow her to have.

For the days normality isn’t enough, there’s “Stormality.”  Stormality is Stormi’s vision of a bigger better world for herself, a way she reminds herself to dream extravagantly. In Stormality, there’s no room for pity parties. “I see myself doing something big, not a mediocre life. I’m not going to be a greeter at Walmart just because that’s what people in electric wheelchairs do.”

Stormality is what inspired her to skydive on her 21st birthday, using a halter specially adapted for her by Skydive

San Diego. Despite her initial fear, she was coaxed onto the plane by the promise of hot military guys doing training jumps, because in Stormality, her place is absolutely among hot military guys.  Of course. Why not?

In Stormality, she dreams of being famous. She’s already rubbed elbows with the Jonas Brothers and Ryan Seacrest.  Despite her best efforts, she hasn’t caught Ellen Degeneres’ eye, but she hasn’t given up trying. Fame, in the world of Stormality, would give her the ability to be absolutely independent.  Fame would be a way to show up those who ignored, doubted, bullied or laughed.

Stormality convinces her that she is not a problem to be fixed, but rather the solution to other people’s problems. She goes to downtown street corners to feed the homeless and helps distribute Christmas gifts to the children of poor farmworkers in Mexico.

She dreams of going to Africa to teach art to children in orphanages. She is happiest when she is leaving her mark on the world.

Stormality reminds her that despite her difficulties, she wins every day just by waking up.  “The life you’re given is the life you’re supposed to live, even if you’re 42 inches tall.”

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