The Glass Wall

I just flipped through Billabong's Spring catalogue. It made me smile, feel so light. I wanted to jump into the pages and onto the surfboard, dive through the waves and feel the saltwater on my face, the blazing sun on my skin. I wanted to be that 20-year-old girl walking through the streets of an island town, alone, with a wicker bag over my sunburned shoulder. I remember those days. So carefree. The feeling rushed through my body. I longed for it. We haven’t been on a vacation in forever. Our last trip was to the Bay Area about 9 months ago for an intensive neuroplastic therapy for Mila. Not exactly vacation, but we made it fun.

Now I craved going to the beach and playing in the waves with my kids—splashing and laughing. Then my heart sunk, like it often does these days. We could go on vacation, but how much of a toll would the flight take on Mila? The risk of getting sick from coughing passengers could have serious repercussions. And getting to the rental car and driving an hour or two to our condo seemed like too much. Trips wipe out Mila for days. And the noises of normal life are so loud and overwhelming for a child with Batten Disease. You can control the volume in your own house, but not on airplanes, in restaurants, at beaches with crashing waves.

Since Mila’s diagnosis of Batten Disease, I feel like there’s a glass wall between me and the world around me. From the outside, it feels like we’re all in the same room — grocery shopping together, strolling down the street together, having a play date snack together. But I don’t feel like I’m in the same world. I see the pane between us. I hear my voice bouncing off the glass. Life around me seems so frivolous, moving along as if nothing happened. Just the other day I met a mom of a 5-year-old girl with a terminal illness. When I sat with her on my couch, crying about my life and sharing experiences and thoughts, I felt for the first time that she was in my room. There was no glass wall that divided us. I didn’t know her, yet our common life, our common pain, was a stronger bond than I had imagined. She told me she was training for a marathon, that she had been a serious runner years ago and was just getting back into it. But the pain that came with running alone, staying in your head for hours on end, made running less enjoyable and more of a goal to simply get home to her daughter as fast as possible. I could instantly relate. It felt comforting in some strange way. 

These days, I don’t leave my house for more than an hour or so to run errands. But the other day, I had to drive to south Denver, and the three hours in the car started with a feeling of liberation, but soon turned to a longing for Mila and Azlan. I just wanted to pull out of the traffic and into the emergency lane and speed back to my house as fast as possible. I hated being away from them.

When I lie in bed at night, my back pushed up against Mila’s warm little body, I realize there’s only one place I want to be — with my kids. I still get tired by the end of the day, like every parent who stays at home with their kids, but I can never get enough of them. The way I laugh with them when we play, the way I feel their energy through my hands when I rub their backs, the way I breathe in their life when I pull my face close to theirs as they fall asleep — it’s something I’m not sure I ever would have been able to experience if it weren’t for our reality. A little gift in the midst of the darkness that surrounds us.

Sensing the World Around Her

Mila was diagnosed with Batten Disease just before Christmas. Holiday festivities were not on my mind, but at some point I gathered the strength to look for a few gifts for the kids. When I walked through the door of our local toy shop, I stopped and looked out across the sea of colorful dolls, stuffed animals, train sets, bouncy balls, kites, backpacks, and shelf after shelf of books. My lips pursed, shaking, and my eyes burned. I wanted to turn around and leave right away. I tried to take a few deep breaths to stop the tears from streaming down my cheeks. But it didn’t help. I left my sunglasses on and walked over to the woman behind the counter. “Do you have any recommendations for toys for children who have a hard time seeing… actually, who can’t see?” I asked. I avoided using the word blind. I still do. She paused and thought. Then asked for what age? How do I respond to that? Mila is six, but she couldn’t play with a toy for an average 6 year old. The woman showed me a small stuffed animal that made noises when you squeezed it, an iPad look-a-like with big colorful buttons that made loud noises mimicking the images above them, a spiky teething toy to grab onto. She gravitated toward the baby section with toys to shake and rattle. I chose a few and a remote-control car for Azlan and checked out. Just before walking out the door, I stopped and turned around. Kids were running around the store, shaking boxes and leaning over books. This same store that I had brought Mila to since she was a baby seemed like a different place to me. I felt like an outsider. Like this was a world that our family didn’t belong in anymore.

That day I decided I would reinvent the way Mila “saw” the world. Losing her vision was only one of her many battles, but it was one that seemed to deeply impact what she could and couldn’t do. It was heartbreaking that Mila couldn’t see what was around her, but I also knew that she could experience the world through her other senses which were working well. I closed my eyes and started to learn what brings happiness when vision is gone. The sounds around me were louder; I analyzed them more. And I craved movement and touch. So I started there.

A kind stranger who read our story in the local paper offered Mila weekly piano lessons. The timing couldn’t have been better. Every Wednesday, we knock on the apartment door and Mila shakes in excitement as soon as she hears Sarah’s voice. She knows what’s to come. We start by sitting on the floor while Sarah plays Chopin and Beethoven. Mila smiles and her eyes light up at the stimulating and soothing sounds of the classical music. Then we help Mila to the piano and she rubs her hands over the keys, slowly pushing one finger down at a time and listening to the sounds she makes. “Big” Sarah says in a high voice as she places Mila’s hand on the white keys. “Small” she says in a deep voice as she moves her fingers to the black keys. Then she places her long fingers over Mila’s small hands and plays “A, B, C, D, E, F, G…” I watch as Mila learns to rely on other senses to take in the world around her. The goal is not to learn to play the piano, simply to learn that you can make music using your hands and take in the beauty of music through your ears.

At home, I cleared out our playroom and filled it with large squishy blocks, beanbags and oblong therapy balls. We hung a small platform swing just a few inches above the ground for Mila to climb onto. An old Pack 'n Play is filled with plastic balls. Some days we pretend the floor is lava and we fly away on our swing to a magical land. Other days the blocks are castles. “Quick, we have to escape from the dragon!” I say as I encourage Mila to reach out to feel the foam steps in front of her. She lifts her knee up onto the block and pulls her body up while Azlan dives headfirst into the beanbag. The kids hide under the colorful balls in the pit and Azlan buries stuffed animals for Mila to find with her hands. We climb and roll and swing and feel the world around us.

But how could I simulate movement when Mila’s walking was so slow and calculated? Just as I was thinking of ideas, a kind woman offered Mila the gift of hippo therapy—a perfect opportunity to feel movement through the natural and soothing gait of a horse. Mila was helped up onto the high back, only a blanket between her and the horse. The instructor guided Mila’s little hand up onto Boo’s soft wintery coat, then asked her to say “Go!” The horse walked into the ring and Mila’s little white helmet bobbed up and down with to the rhythm of the gait. Mila’s smile spread wide and she giggled in delight.

I still close my eyes often and try to feel what it’s like to be Mila. Instead of sadness, I now feel the power of sound, touch, and movement. I still have much to learn and share with Mila, but my initial sadness has turned to opportunity. Next on my list - tastes and smells!

- Julia, Mila's mommy


We are One

When Mila was a baby, I remember feeling like she and I were one being. She nursed until she was two, she slept in bed next to me for the first six months of her life, and I carried her on my body almost everywhere I went. But there was something even greater than the physical attachment. When she was excited, I was excited; when she was fussy, I was fussy. It felt as if she were an extension of my body and my mind. As she grew older, I felt her detach and become her own person with her own personality and her own interests. When she started preschool around two, I would watch her slip into her own little world, independent of me. It felt strange at first, especially since I had been at home with her, by her side every step of the way. But it also felt right, part of the natural process of growing up.

During this time, she was drawn to friends at preschool like a magnet. She decided splashing in puddles at the end of our block was more fun than making it to the playground. She found her favorite muddy nooks to play in at the farm in the summer. And singing the words to Puff the Magic Dragon and Rudolph the Red-Nosed Reindeer never got old. She always wanted mango ice cream. And she insisted I include her in every story I made up — Mila became a princess and joined the royal ball, too! Mila and her mermaid sister found the underwater treasure! Mila grew wings and flew up into the sky with the fairies!

But Mila’s independence only lasted a few years. As she started to stumble and fall, I spent more and more of my time by her side helping her up and spotting her at the playground. As she fell behind with drawing, cutting, picking up small toys, singing the alphabet, I sat beside her and helped. When she started to make a bigger mess at the dinner table, I pulled my chair closer to her and pushed her bowl under her chin and corrected her grasp of her spoon. Mila had just figured out how to push her strider bike and lift her feet when things took a turn, so I held onto the handlebars with her and let her feel the bike glide below her.

Time passed and everything became harder for Mila. As she was losing her vision, she relied more on me to help guide her in busy outdoor areas. As her talking became more difficult, she needed me to stroke her arm and help encourage her to retrieve the correct word. As Mila's walking became more unstable, she turned to me to help her up when she fell and place her hands on the stairs so she could climb up on all fours. I started to carry her when she was tired. In retrospect, I now realize that Batten Disease was taking its toll on Mila. I would describe to her the cows outside her window when we drove past a field, or the fluffy white clouds like sheep in the sky when we took a walk. Her independence slowly slipped away.   

In the last few months I’ve realized that Mila and I are one again. I am her legs, her arms, her mouth, her eyes. But the light inside is still uniquely Mila — radiating joy and strength. What gives my life purpose now is working towards a future where that light burns as brightly as it once did and Mila regains her independence.

- Julia, Mila's mommy

This is my life

Today, a friend of mine sent me a text saying that her daughter came home from school and asked why a picture of Mila was posted in her elementary school. My friend asked if I knew about this. I didn’t. When I read the text, it confused me at first, almost made me smile to know that a photo of my sweet Mila bug was posted on a wall for everyone to see. It brought me back to a similar moment when Mila was just one. We were heading to our baby tumbling class when I happened to spot a poster on the wall with a photo of Mila smiling up at the camera. At the time, it made me laugh and feel proud that someone choose my smiley little girl to use on their poster. I grabbed a copy and stuffed it away in my “Mila” folder back at home.

When I read my friend’s text, my heart went to that same place of pride. But then it dropped and I cried. I imagined students Mila’s age racing down the hallways past Mila’s photo with their backpacks on, maybe heading to their classroom or to recess or the cafeteria. All things that Mila may never know in her life. Things even I as her mom know nothing about. What do six-year-olds do at school these days? Do they write sentences in those black and white notebooks? Do they read stories? Do they learn about other countries? I hate going to that place, thinking about the kids she used to call friends. The ones that used to swarm around her, who would want to run around the house with her, to jump off the bed with her, to dress up like fairies and princesses with her. The memory is painful. It doesn’t make me feel anger. The feeling just forms into a giant wave of pain, of a sadness that’s hard to describe, which covers me, suffocates me. A sadness for Mila, for us as a family, for the life I always assumed we would have. Why wouldn’t we?

Since receiving Mila’s diagnosis of Batten Disease just two months ago, I have avoided looking back at photos, of opening up our Mila folder in our old wooden filing cabinet. But today I decided to look. I found the poster of Mila from the tumbling class. It made me instantly smile. She really was so cute, so radiant. I found a stack of colored construction paper with squiggly marker lines across them, feathers, glitter, cotton balls, preschool teacher’s handwriting “To mommy”. And then I found a slightly browned cover of Boulder’s newspaper, the Daily Camera, from November 2012. There was Mila, just two-years-old, decked out in her brightly colored paint-splashed snow suit with furry lined hood standing in the snow and smiling up at the camera once again. I remembered all of the cute photos included online with the article – photos of a girl full of life kicking piles of snow and climbing up onto the planters on Pearl St.  I stuffed the papers back in, and added to the top a copy of the Daily Camera from just last month. The title stared up at me “Boulder County Girl Diagnosed with Batten Disease”. I felt my breath push out of my chest. I closed the folder and stuck it down into the filing cabinet.

Sometimes I feel like I’m on the outside looking in. That I’m watching someone else’s little girl on the news, reading about her in articles, walking past her photo in a hallway and feeling tears well in my eyes at the thought of that terrible thing happening to my family. And then trying to convince myself that I can’t take on the world’s burdens, something I’ve always struggled with. I can’t make the sadness of what this family is going through my story or my life. I just need to feel sad and move on. But then I wake up, as if I’ve been slapped in the face, and look at myself in the mirror. This is my life. This is my daughter who is dying. This is my son whose future dangles in limbo. I breathe deeply, warm tears pour down my cheeks. I lift my chin as I hear giggles coming from the other room. I smile at what I have today. And hope for what tomorrow may bring. 

- Julia, Mila's mommy


Mila has lost her vision and much of her ability to walk and talk. But she is a fighter. We need your help now to give children like Mila a second chance at life.

Mila's Miracle Foundation, Inc. is a 501(c)(3) nonprofit organization. All donations are tax-deductible.