When my little brother was granted a wish from Make-A-Wish earlier this year, I wasn’t happy like my mom was, who doled out the news to me over the phone. I was angry.

Her face glowed on FaceTime, as my 11-year-old brother, Gavin, sat next to her. “Your brother’s getting a wish! Isn’t it exciting?” she asked, squeezing him.

I looked at Gavin, who is labeled by the medical institution as “nonverbal” though my family and I can understand his needs, feelings, everything. He jetted out his left arm and let out a loud, “Ahhhh ha!” along with his signature full-teeth smile, which means he knows something good is in the works.

He was thrilled. But I don’t think he understood the requirements of getting a wish: a child between 2 ½ and 18, “suffering from a progressive, degenerative or malignant condition currently placing the child’s life in jeopardy”, as described on the Make-A-Wish site.

Facebook Twitter Pinterest Courtney Lund O’Neil with her brother, Gavin. Photograph: Courtney Lund O'Neil

I wasn’t sure if Gavin still qualified to get a wish. He wasn’t suffering from regular seizures any more. He was happy most of the time. But, I realized, he has a “condition currently placing his life in jeopardy” and the illness would never go away, it was incurable. Aicardi-Goutieres Syndrome (AGS), a rare genetic leukodystrophy was his diagnosis at four months old. Getting a wish meant he was actually likely to die one day from it.

Most days I pushed this truth out of my peripheral. I know we are all mortal. We are all going to find the dirt or the great light in the sky. But not my little brother. And definitely not before me.

I smiled and waved back into the screen. “Gavin, how exciting! How do you plan on spending your wish?” I often hid my true feelings from Gavin. The pain I feel about his life is messy and complex.

“You could use it for his new bedroom,” I offered. The wish was worth up to $15,000.

Gavin, medically fragile, cognitively and physically disabled (though just calling him my brother is my preferred designation) was getting a new first-floor bedroom. He was as long as a surfboard, and it was getting difficult for my parents to carry him upstairs, where he slept in my old bedroom. The first-floor bedroom renovation was costing my parents the bulk of their savings.

“I’m thinking of making a special needs gym for him in the backyard. With equipment and toys like a zip line that he can use forever,” my mom said.

She kissed Gavin’s cheek; his blond curls smushing up against her forehead. My left eye began pulsing, a sharp pin pinged the back of my optic nerve. I was about to cry. I told my mom and Gavin that I loved them, loved the idea. I did not tell them I was angry.

Gavin was in hospice care during his first year because he had a disease that no doctors in California had heard of. AGS warped and calcified parts of his infantile brain, causing brain damage.

When he turned one, doctors said although his life would be different and difficult, he would live. But no one told us about the pain that came with raising someone who could not navigate life on his own. It was a simmering, slow, omniscient type of grief. A cloud that never fully went away. My parents would always grieve the life their son never had. And because I fiercely love my brother, so did I. It seemed, for his entire life, we were fighting for him to live. A wish being granted felt like we were no longer fighting.

As Gavin grew up, I yearned for him to be able to verbally speak to his friends at school. To take big bites out of BBQ bacon cheeseburgers; chew and swallow on his own. To do a handstand with me on the beach. To fall in love with someone one day, who loves him like we do. I long for him to play freely with my two-year-old son. When my son expects his Uncle Gavin to chase after him, instead of hearing Gavin’s “ahhhh” shift into a deeper desperate tone, one of pain from knowing he cannot run with his nephew; I want my brother to run.

Gavin after the 2017 Bay Bridge Run/Walk in Coronado, California. Photograph: Courtney Lund O'Neil

We’re a religious family. My dad came from a Christian Science background, a religion that believes in reciting biblical passages over the ill, and that Jesus miraculously heals people. I also am a believer, baptized Methodist in a stained-glass church in San Diego as a baby.

I thought for a long time, even as an educated person, that there would be a chance my brother would be miraculously healed. One day, he would jump out of bed and waltz downstairs on his own, instead of my 62-year-old dad carrying his son’s 50-pound body down the steps. But Jesus hasn’t shown up in that way. My brother still needs constant assistance and qualifies for this wish for something material, while the spiritual wish we deeply crave goes unfulfilled.

When my brother does receive the wish they decided on – a special needs gym – and I post about it on his Facebook page, I want you to know that I am happy. I am grateful to Make-A-Wish and the generous donors. But I also want you to know that disability is more complex than the stories we give them.

We tend to view this kind of wish like a last hurrah before an impending death. But I don’t think we need to view them this way. I’d rather view it just as a gift, an acknowledgment, for Gavin and my family. My parents, my two sisters, Gavin, and I work incredibly hard despite there being no handbook on voyaging through multiple medical institutions, medications, therapies, school, friends while loving someone who needs a lot of extra support.

My mom said in our phone call that Gavin would have his gym “forever”. I know where my mom is coming from. I know why she used “forever” even though no one can measure a life like my brother’s. We commit these acts of faith because they keep us going. We don’t choose illness, but we can choose to believe. By verbalizing “forever”, my mom knows she never gave up. She helped make a life for him. We can all pull shards of beauty from life’s unexpected destruction.

This summer, I’m going to New Mexico to visit a church with red dirt said to have healing powers. I’ll bring some of the holy dirt home for my brother, to rub on his feet, across his arms, down his temples. Of course, no one really knows if the dirt will do anything, but I’ll never stop believing.