Maya Bird

An Aunt's Love

Maya was a force. Not just for our family, but wherever she found herself. My sister knew before she was born that she’d arrive with challenges, the least of which might be her Downs Syndrome. She had a congenital heart defect that needed to be addressed by a specialist in newborn cardiatric surgery, soon after she was born. Before all that, she would need to have a repair done inside her digestive tract the moment she was born. 

Maya was part of a twin set with a brother, and they both have an older sister. Her dual diagnosis of autism didn’t come until later, but she taught us all lessons in patience and strength. My sister could fill you in on her myriad and lengthy list of health problems, but I’m here to tell you about her dogged pursuit of whatever she decided you’d like best. 

This wasn’t a simple matter. Some people were put off by her “other” appearance or her difficulty communicating. But that was short lived. Among the many lessons she taught me: intelligence comes in different packages. Her super power was finding your good time. She studied you, trying out different games or commonalities before she placed you inside her circle. Once in, she locked on and grabbed hold. You really had no choice but to play.

Hugging Kashi

She had a preternatural patience. If that didn’t work, she tried something else. No special dance, how about a fun hand game? A small girl with a crazy sense of humor, a love of loud noise, a good tune, and Family Feud with Steve Harvey, she could be unreasonable. But mostly, she was ready to laugh and always good for a hug. Actually, she fit perfectly into the long line of character driven women to whom we were both born.

When she was very young, she got me on Wheels on the Bus, where my version included a particularly angry bus driver, demanding, “Move on Back. Hey! Move on Back.” It wasn’t until I met people from outside the tristate area that I realized not every driver had an angry delivery and a chip on their shoulder.

While I will sing at a moment’s notice, I have a canine heart. It is one more thing we had in common. She chased me around the house, signing to me that I should, slap knee snap fingers, hug my dog called, Kashi. Hug Kashi. Hug Kashi. I’d go back to what I was doing, explaining that there were things I had to take care of. She remained unfazed by my excuses. Hug Kashi.

Of course I did. I don’t care what you tell yourself, even if you were going to burn the rice or dry out the turkey, even if the dishes and the toys remained, you’d hug Kashy too. And you’d go back to clean up the mess with a huge smile across your face.

Her health problems continued. It was always something they were working on, things the rest of us take for granted. Walking. Talking. Swallowing. You’d think she was delicate, but she was a bull, swallowing pain and laughing her way through procedures that would have broken the rest of us.

I got the privilege of staying with her and her siblings when their father became gravely ill. There were always so many complications with her, I was scared to touch. I didn’t want to mess things up. Someone else came to do the physical stuff and get her ready to leave for school, but the rest of it was up to me.

Though she was nonverbal, she had signs and no problem communicating whatever she wanted. We navigated through unfamiliar waters, with her patient shake of the head or a suspicious cock of the eyebrow. I did my usual rendition of I can maybe do this, but also maybe cannot? She had faith in me, I had her brother and sister to confirm with, and together we muddled through. Their father has recovered and I have a memory I cling to.

Two years ago, tomorrow, she died. She was almost 16. It was sudden, ironically due to complications from that very first surgery. Losing her broke something fundamental inside of all of us. A humbling silence replaced our peace of mind.

I cannot write about those last moments, the goodbyes and the unimaginable decisions that come at the end. A person’s life, in the best of times, is so much more than the way they die.

My sister’s pain is unbearable. Any mother’s is, as it must be. May I never find out first hand. That sacred bond should always be broken top down. 

Maya wasn’t a part of my day to day. I saw her every month or so, and did not realize that I think of her ridiculously often—less in a mournful way now, than in a Maya would love this contemplation. Every dog gets a hug now and I wonder whether Maya would like them. The answer is always, yes.

For me, Maya’s death was sort of an awakening. Nothing is deserved and or undeserved, earned or not. We could not keep her alive no matter how hard we tried or wanted to. Maya died. For no reason. What we do with her memory is up to us, and I’m keeping mine close.

My sister fell apart the way you’d expect someone to when their world is crushed by such an ocean of pain on a sea of sudden silence. I wanted to fix it for her, but couldn’t. It has been a rough go, but she does a remarkable job of moving forward, getting out of bed, and making Maya’s legacy a blessing. I know our mother would be proud.

Then there is her uncle’s misery, my husband. If my orbit is a study in good times, my husband’s is a practice in repetition, which Maya took on like a champ. When she was little, I understood that he would be no help in the kitchen. Instead, they would play the same games, identifying all the people in the family, and doing a super special dance when they got to either the dog or her twin brother. I didn’t mind calling in extra help.

In the middle of the night, after she died, one of us would wake the other up with hot tears on wet faces. Maya’s presence stays with all of us, much like her determination. She was always my super loud and silly goose. Geese will forever be my Maya bird. As I travel the world, a line of honking finds me. When no geese are available (for actual habitat reasons), she finds me in yellow butterflies. Or maybe that’s how I find her? Either way.

In order to overcome the fear of death you must live. And the best way to stave off the abyss of sadness and outrage that her absence has left, is to do what she would have—sing like you mean it even without words, dance when your legs are unsteady, and find a way to make another person smile whenever you see them. 

Dear readers, may you find the Maya in you. And make sure you do a super special dance when you get to your favorites.