Walking the Fine Line

 
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Before Mila was diagnosed with Batten Disease, I had never heard the term “terminally ill” used to describe children. I had seen photos of kids with Leukemia, their smiles wide and their heads bald and shiny. But I only allowed myself to feel the pain for a short time before turning the channel or flipping the page. It was too much for me to bare, especially once I had children of my own.

Now I find myself on the other side of the fence. The pain I have experienced over the past nine months is something completely different than what I had felt when thinking of the kids with Leukemia. The pain I feel runs through my veins, down my nerves and wraps around my heart. It is now part of who I am.

I consider myself a nostalgic person. I love to look back on the past and smile and laugh at the amazing memories I have collected along the path of life. Splashing in the lake with my brothers on hot summer days, kneading pasta dough with my grandmother, riding motorcycles through the hills. It makes me feel young, as if these times were just yesterday. But this changed when Mila was diagnosed. These memories have fallen down the totem pole to a place I can barely see. My joy of the past has been tainted. Without Mila’s health, these times don’t seem to matter much anymore. I still allow myself to go there, to relive the happiness and share these memories with my kids. Even to laugh about them. But in my mind, they have turned into experiences Mila may never have.

Instead of reminiscing about the past, I try to live in the now. But no matter how much I try to stay present, the future looms above us and forces us to face what lies ahead. My conversations with Alek now include terms like Rescue Medications, End of Life Plans, Do Not Resuscitate, Brain Donation... We turn to other parents of terminally ill children to ask about feeding tubes, leg braces, shaking vests to avoid pneumonia, wheelchairs. And the photos of children at the end of their fight with Batten Disease show us what our sweet Mila will endure in just months or years from now.

I carefully walk the fine line between reality and hope. A small fragile place between digesting that no child has ever lived with Batten and knowing we are riding a scientific wave towards curing genetic diseases. A cautious optimism. There are days when I have to remind myself of Mila’s reality, and not think about the possibilities our trial offers. I try to imagine that the trial is an impossibility, that all we have is the now. It allows me to be more present than ever. I watch the way Mila’s thin fingers gently rub the bumps on the Lego block, the way her soft hands tap the hard wood floor as she listens to the sound it makes. I watch the way her eyes get wider and her face lifts and smiles when I retell Goldilocks and the Three Bears. I simply try to be Mila’s mom by my daughter’s side, taking in the simplest of moments together. 

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 And then there are days I force my chin up to look across the wide blue Colorado sky and remind myself that Mila’s symptoms could truly be halted, even reversed. That the effects on children in very recent trials are astonishing scientists and bringing enormous hope to parents. When I climb into bed at night, I close my eyes and envision Mila walking up a dirt path with strong legs. I picture her little fingers holding her doll tightly by her side. I hear her giggling and singing Puff the Magic Dragon, perfectly forming the words that she now so desperately tries to get out. My mind hovers over Mila as she continues to walk up this path to a place where retina transplants and brain regeneration make a breakthrough. Mila lifts her head and looks out across the mountains, her smile wider than ever as she once again sees the colors of life. And there I am at the end of the road, on bent knees. Mila runs right up to me and hops onto my lap. She looks into my eyes once again and says “I love my mommy”.

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Julia - Mila's mommy

The Trees Who Stand Tall

 
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The other day, I took Mila to her first yoga therapy session. She lit up as we worked to open up her chest, stretch her arms, and suspend her upper body with the help of ropes. I can only imagine how good it felt to bring feeling to areas of her body she wasn't normally using, to relax in positions that gave her organs and muscles a rest. As always, her smile let us know she agreed! 

There’s a tiny studio in town that’s been around forever, which offers restorative yoga, demanding of its teachers years of studying anatomy. In the last few months, a number of friends have mentioned that the teacher there works with children with neuromuscular diseases. So I reached out, and we agreed I should stop by and sit through a session with these children.

I arrived a little early and sat on the curb just outside the door. I noticed out of the corner of my eye a couple moving slowly my way from the parking lot. I looked up only to see that it was a mother perhaps 10 years older than I am right behind her teenage daughter, pushed up against her body to help her move forward. She was holding her hands with a strong, yet loving grasp. They stepped in sync in a way that was so familiar to me. The girl reminded me of Mila with brown hair and bright shiny eyes, but with an open mouth and a seemingly emotionless stare. Her arms were locked in a bent position and her hands were in tight fists. The mother and her daughter stopped right in front of me for a break and the mother looked up at me with a tired, but genuine smile. I felt as if I was looking into my own eyes years down the road—the eyes of a strong, worn out, yet incredibly loving and dedicated mother. I could see the muscles in her arms built up over years of holding her daughter as she could no longer hold herself.

 
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She introduced me to her daughter and said she had heard about Mila. I looked into their eyes and couldn’t hold it in, I didn’t want to. I bowed my head and cried in honesty and pain. At first it came from a place of sadness and fear, that this was my future. But it quickly turned to admiration for this amazing mother, so strong and radiant, her feet standing so firmly on the ground. She looked at me, and tears filled her eyes. She knew my pain and joy, and I knew hers. Her tears seemed to say, “I know what your life is like; I’m sorry. But this life can also bring such joy.” She hobbled behind her daughter through the door of the studio where the teacher’s voice lit up the room in excitement to see her. This girl had been coming for five years now and was welcomed as if coming from her own mother. I was overcome by emotions as I stepped into the room.

Up against the back wall was another mother, her son by her side lying on his back across a raised cushion. She applauded her son, and he smiled back up at her. More tears poured down my face. I was immediately taken aback by how spirited and upbeat she was despite the road she had traveled and the prognosis of her son. She spoke in a tone of pure acceptance and optimism. This was her life, and it was OK.

 
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I didn’t know any details of these mothers' lives, but yet I felt I knew them so well. I knew the sharp turn their lives had taken, the tears they had shed, the strength they had to find in themselves to keep moving forward, and the immense never-ending love they had for their children. I knew the adjustment they eventually made to accept their new norm. And the ups and downs their road had taken them on.

For the next hour I sat cross-legged on the wood floor and watched as these mothers kneeled and bent over and lifted their children to help them into poses. Their encouraging words and love lifted my spirits higher and higher as the time passed. What one might have interpreted as a room full of sadness to me became a room full of radiant energy.

 
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Despite the pain, I walked out of the studio that morning feeling fortunate to be part of this raw and honest side of life—a beauty most people would never know existed. We are parents who must stand tall like trees, whose roots extend from our bodies and wrap around our children’s eyes, their legs, their bodies, and their minds.

- Julia, Mila's Mommy

Mila's WAVE

 
 

Sometimes I wonder what Mila would be passionate about if Batten Disease wasn’t forcing her to concentrate every ounce of her amazing energy on surviving. I have been lucky enough to be part of her every day, to see the fire in her eyes, and experience her excitement for life. Mila used to sing the words to "Rudolph the Red-Nosed Reindeer" at the top of her lungs, year round, while flipping her hips side to side. She would gobble up an entire pizza and with a full mouth ask if I would share mine. She would run to the edge of the pool and jump in with no idea how to swim. I remember when Alek and I first took Mila skiing at 2 years old. We buckled her into her little boots, snapped on the skis, and stuck her at the top of a barely noticeable bunny hill. With almost no slope to help her move, she looked through her goggles at us with an expression of, “What am I doing here?” Then she stared up at the mountain towering above us, and we knew where she wanted to go. We shrugged our shoulders and jumped on the lift to the top. She laughed out loud in excitement as she zoomed down the mountain taking turns between Alek’s legs and then mine. Up and down we went. Mila couldn’t get enough of skiing, of life.

 
 

The next winter was her peak. She graduated to a ski leash and was fearless as we yelled out “look at the trees” and she turned to the right, “look at the lift” and she turned to the left. “Pizza!” and she tried to stop. Mila was catching on, growing up. But the next winter when she was 4, she started to get scared. In retrospect, I realize that her vision was probably starting to go. And her sound processing was probably on hyper drive to compensate. She was easily startled and easily fatigued. We didn’t take Mila up to the mountain much that year, and we started to worry.

Mila never went skiing the following winter when she was 5. It just seemed too much for her. By that point, my concern had turned to anxiety—an unknown we couldn’t pinpoint and neither could any doctor. Over the past two years, I’ve painfully watched Mila slowly revert back in time towards infancy. She had been bounding up and down our staircase. But I had to start holding her hand, then having her crawl, and eventually picking her up at times to carry her down. She used to jump like an agile frog from the couch to the table and back, but she started to trip, to fall, to bump into chairs and tables. She started collecting bruises and black eyes. Mila had mastered using her fork and spoon, receiving applause as she twisted up her spaghetti Italian style. But she started dropping her fork and using her hands. She choked so we cut her food into small pieces, and now we often revert to the blender to make sure she gets enough nutrition.

 

It seems like just yesterday I was buying puzzles and word games. But I slowly gravitated toward simpler toys, little figurines and dolls. And now that Mila has lost her vision, we stick to tactile toys and rattles—the same toys I would have bought her when she was a baby. Last summer, she was wearing underpants with ponies on them. Now she’s back in pull-up diapers. She used to hike with Alek for hours on end and belt out the words to her favorite songs. But those songs slowly disappeared from our life, Mila became quieter and now she mutters just a few words she can conjure up like “Mommy.”

 
 

But our saving grace has been seeing Mila’s character, her laughter and smiles shine through despite her losing her abilities. It astonishes us every day that a child faced with such difficulties can be so happy and still love life so much. We’ve started bringing up memories from when Mila was little to the kids and reminding her of fun experiences or things that she used to do. I often have to fight off the tears when I retell the wild adventures of Mila bug. But it also feels good not to force them away anymore. And each time I get to the point where something funny use to make Mila laugh, she lights up and remembers it and giggles uncontrollably. This gives me such HOPE! Mila is still with us, and she's so strong.  

But we know her light will soon fade if she doesn’t get a treatment to stop this horrible Batten Disease. It seems unreal to me that my growing, advancing little girl hit her peak at just 4 years old. Her wave rose up and up … and now it’s falling back down. People casually throw out that “life is unfair.” But these three little words don’t do justice to what my sweet Mila has had to endure. What our family has had to experience by her side. Every day, I force myself to lift my head and look to the sky and tell myself that there IS hope for Mila, and I’m doing everything I can to give her the best chance possible at life.

-Julia, Mila's mommy

 
 

Everyone's Sunshine

Just a few days after Mila was diagnosed with Batten Disease, an old friend put me in touch with a woman she thought I should speak with. This woman had lost her son two decades ago when the young, aspiring photo journalist was killed in a war-stricken area of Africa. Wise well-beyond his age, her son’s mission to expose the pain and fear in this area of the world caught him in the wrong place at the wrong time. Now, his mother strives to keep his spirit alive by encouraging other young activists to communicate their messages through media and art. The story moved me, even at a time when I felt such deep pain about Mila.

The news that Mila had a terminal illness with no cure had just barely begun sinking in when I had this phone call. We spoke for a while, most of which is now a blur, but there was one message she shared with me that shot through my body, made me fold over in pain – less from a place of sadness, more from the realization that she was right. She told me with conviction that Mila has a much bigger purpose in this life than I ever would have imagined. Her gift to me was being my amazingly happy, loving daughter who showed me the joy of every minute of every day. But her gift to the world would be something much larger. In that moment, my throat locked up, the tears filled up in my eyes, I pulled the phone away from my face and cried. I knew she was right. It almost felt like I let go of Mila just then, I gave her up to the world around me. But I quickly pulled her back in. What she said hit me like a bullet. But I wasn’t ready to sacrifice my sweet little girl up for the good of others. It was easy to write this, even as I created our website. But it was excruciatingly painful to believe it.

A number of months have passed since this conversation. The message has come to mind many times since then, but I still could not digest it. I believed that the clinical trial we were starting could stop the disease not just for Mila, but for other children like her. But when I looked myself in the mirror, I was honest with myself. I simply wanted to save Mila’s life.

And then something happened. I woke up early one morning and rolled over slowly to grab my phone as Mila lay sleeping peacefully next to me. I opened my email. A family in Europe with a 7-year-old boy suffering from the same type of Batten as Mila heard about our trial from a doctor. I was caught off guard as I read a long message from the father of this little boy. His son was about Mila’s age and was suffering the devastating affects of Batten - he has lost his vision, his ability to walk, and his ability to talk. And just that day, he and his wife had received the heart wrenching news that their perfectly healthy three year-old son had Batten as well. His pain and desperation shot through my phone, up my arm and into my heart. I could barely breathe. This was his Azlan. His shining light in the darkness. A little boy who climbed over rocks and ran through fields and sang songs. Untouched so far by the horrible disease that has robbed his other son of everything. He begged for hope. He could not go through this again. I knew his every thought. I had lived each of them for months and months as I waited for Azlan’s diagnosis. We were so incredibly fortunate that Azlan was spared. We had found out just a few weeks before. But this family was not as lucky. And I wept in pain for them. I pulled my phone away, lay back on my pillow, and tried to wrap my head around how it was possible to have a deeper pain than what I was experiencing with Mila? How could there be a place below where I was now? How could any family be dealt this amount of pain in one life?

 
 

I looked over at Mila, laying quietly on her lilac pillow, her long dark lashes asleep on her face, one hand holding the other. Her inseparable friend, Olaf, lying on her shoulder. My pain for her, for my family, for our life pushed up my throat as I tried to breathe. And then I thought of this family and their little three-year-old. It was the first time that I truly felt what an incredible gift Mila would give the world. I cannot know whether the trial I start will be in time to save Mila’s life. But I do know that because of her, for the first time ever, children facing this terrible terrible disease will have hope for a long, happy life. And this father might be able to grow old with his son.

Mila has touched so many people’s lives over the past six years of her beautiful life. And now her light radiates so much farther than I could ever have imagined. I look at her today and feel in my body that my sweet sunshine, my Mila bug, has an amazing purpose in life. This thought gives me even more strength to keep fighting for her life.

-Julia, Mila's mommy

 

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Being a Mother

Today, I face the joy and the pain of being a mother. This Mother's Day, I ask myself what it truly means to be a mom? A few months ago I might have said to make your children laugh, to teach them what's important in life. But now I answer differently. To make today a happy day - as if there were no tomorrow. To radiate love to your children every day. To give every bit of yourself for the life of your child.  

Today, I've thought about how amazing my own mother is. She has allowed me the space to grow into the person I am, together with the guidance to direct me when I was lost. She encourages me in whatever I do and makes me feel strong and confident. She always gives me hope in even the darkest moments. And most importantly, she has shown me through her actions that her love for me is constant and nothing comes before your child. Nothing. When I have really needed someone, my mom has shown up. Not a month later, not a week later, not even a day later. Right then, when I've needed it most she is there. Always. And the times I've needed someone were often the times that were most inconvenient for her. That's just how it goes. But each time she's managed to put everything aside to be there for me. And the list isn't short.

When I shattered my ankle and went through excruciatingly painful surgeries, she fed me and bathed me for weeks. When my water broke 3 months before my due date she was in Colorado by my side within hours distracting me with stories and giving me reasons to have hope. When I went into labor with both Mila and Azlan, she was there before leaving for the hospital and there to watch my babies come into this world. And when Mila was admitted to the hospital in December, my mom was in the room with us that same day. She stayed for two months to hold together our family and help me put one foot in front of the other, showing Mila and Azlan my love every day. All of this while holding a full-time job and putting her money toward the care we need for Mila.

So when people ask me how I find the courage and energy and drive to put together a clinical trial to save my daughter's life, to attempt to raise millions of dollars in one year and to try my best to be in the moment with my kids - it's because of my mom. 

So thank you, mommy, for instilling in me the love, strength, courage, and hope I never knew I would need to rely on so greatly. 

Julia - Mila and Azlan's mommy, and my mommy's daughter

My Little Trooper

Azlan. My little trooper. What would I have done without him over the past few years? He has provided sweetness, laughter, and light when I’ve needed it most.

When Mila was one, I had a few miscarriages, and tests came back showing that it would be nearly impossible for me to have another child. I was heartbroken. Since I was young, I always wanted lots of kids — at least four, ideally five. I used to think of names for them. And here I was being told that I couldn’t have any more. I was so grateful for my giggly Mila bug, but I didn’t give up hope. I put my faith in an old Chinese doctor, and a few months later I was pregnant with Azlan. When my little boy came into the world, I felt so incredibly lucky. He was gentle, sweet, and happy in just about any situation. Mila held him and kissed him and refused to call him anything but pasta legs and cupcake head. She tried to teach him how big kids do things. I carried him on my body wherever I went, nursed him throughout the day, and snuggled in bed with him every night. We were one.

 
 

But the easy rhythm of our lives changed when he was just a few months old. I started to question what was happening with Mila. I began to look into therapies, fill out forms for evaluations. And my focus shifted. Six months later, we moved Mila from her preschool with all of her friends to a new school where an IEP offered her extra help with motor skills. The new timing was rushed and didn’t match Azlan’s sleep schedule, so I was constantly waking him up to bring him back and forth to school. Soon after, Mila started speech therapy three times per week, sometimes four. I would bring Azlan in his car seat, nurse him while we waited, occasionally take him on a walk around the neighborhood to kill time. His very first interactions with other little ones were made in that waiting room. Then we started occupational therapy, which was 30 minutes away, so I dragged him there, too. I constantly asked myself whether I was being fair to him, depriving him of playdates with kids his age and the attention he needed. But my hands were tied. And he seemed happy, so I continued to fight off the guilt.

No one knew what was happening with Mila, so I started learning about neuroplasticity and the brain’s ability to create new pathways, to regain skills. There was promising evidence that it helped, so I felt like I had nothing to lose. That is, except depriving Azlan of his childhood. I took Mila to a week of neuro-movement therapy in the Bay Area more than once, to a neuro-optometrist in Chicago, to a listening therapy in Toronto, to an osteopath in Boston. Azlan would be strapped to my back as I pushed Mila in a stroller through the airport, through the streets of these cities, to the therapies. Azlan would calmly look around as I brought him in and out of waiting rooms, hotel rooms, airport bathrooms while my focus was on helping Mila. My attention was almost always on her, but my heart yearned for time alone with my little boy.

In the last six months, as Mila declined and I aged, Azlan grew into an independent outgoing kid, an entertainer for our entire family. He strums his mini guitar and makes up songs — his favorite being “Dangerous Waterfalls.” He sings the soundtrack from Frozen, which sends his sister into extreme giggles. He jumps onto tables and roars and bellows like animals, asking us to guess which one he is. Mila’s neutral stare breaks into her wide smile and sparkly eyes. At the dinner table, he rhymes and recounts elaborate tales, turning the end of a tired day into laughter. After bedtime stories, Azlan climbs on top of his sister and sits on her head until she struggles to push him off. She laughs, and he continues to show his love for her as he sticks his face up against hers and pushes his nose into her mouth. More giggles.

The other day I was lying on the floor of Azlan’s bedroom talking with him. I said, “Azlan, you know it’s very hard for Mila to see. Actually, she can’t see what’s around her — like our house, her toys and books, the trees and clouds outside.” He immediately responded, “I know mommy. Mila can’t see.” I was shocked. Sometimes it makes me so sad to think of the emotional burden that he is facing at just three years old. But he seems to have an understanding beyond his age of what’s going on. Despite all of this, he is so happy! So I try not to overthink it. Recently, I’ve made more of an effort to carve out time to be with him, at his level, to talk about dinosaurs and robots and make pretend caves in the bushes and run through the grass and scream. I take him to the movies and hold him in my arms as he stares with fear and excitement in his eyes. He loves going back over the movie plot with me every night.

Last summer, the kids started at a small one-room preschool together. At first, Azlan stayed close to Mila, but he started to gravitate toward the other kids and learned that he was, in fact, his own little person. He would still sit near Mila at lunch and check in on her. It brought me such happiness. For the first time, it felt like they could both be kids, together. One afternoon a few months ago, I arrived early for pick-up and watched from the back of the room. Azlan and Mila were sitting on the floor at circle time, and each kid in the class was taking a turn and choosing someone to get up and hop with. No one picked Mila. When a new shy girl stood up and looked around, Azlan raised his hand high and yelled out “Pick Mila! Pick my sister! She wants to hop with you!” Tears poured down my cheeks. I was so proud of my sweet and strong little boy.

Azlan has been my right-hand guy. His spirit has gotten me through the uncertainty, the battle, the grief. Thank you, my little one.

Julia - Mila & Azlan's mommy

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