This Little Light of Mine

 
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Last night I fell asleep with Azlan as I read him a story. I woke up a little later, my face pressed against his sweaty curls. The room was dark, but the street lights outside our temporary Boston home shone through the blinds just enough so I could see his long lashes on his cheek. I lay there for a while looking down at him, his little hands grasping his hippo blankie. I smiled to myself as I thought back to when Mila was preparing for Azlan's birth. She was inseparable with her blankie so she decided her new brother needed one as well. I showed her numerous animal options - giraffe, monkey, sheep, lion - but as soon as she came across a hippo blankie identical to her own, just slightly more blue, she blurted out “that one!”. I kept asking if she was sure she wanted Azlan to have a hippo almost unrecognizable from her own. She was sure, without a doubt.

 
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The day Azlan was born, Mila opened her arms and carefully held him close. She proudly presented him with his new hippo blankie which he still snuggles with every night. But as Mila’s disease really started to take shape a year or so ago, she stopped sleeping with her hippo. It felt like an era was coming to an end. We had no idea at the time that it was symbolic of something much greater. Laying next to Azlan last night, I was transported back in time to the countless nights I fell asleep with my face pressed up against Mila’s, her fingers wrapped around her hippo, her thumb in her mouth, just as Azlan slept now.

When Azlan came into the world, Mila decided right away that she would call him “pasta legs”. She would giggle uncontrollably and squeeze his rubbery thighs. After a few months she moved on to calling him “cupcake head” which amused her just as much, and then finally settled on “boo boo”. It’s been close to a year now since Mila has been able to say his nickname. But Azlan hasn’t forgotten it. The other night at the dinner table, he looked longingly at his sister and said “I wish Mila would call me “boo boo” again”.

 
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My worries about Mila started when Azlan was just a few months old. I was falling in love with my little boy more and more each day, but my focus inevitably shifted to Mila as her gait and speech began to change. Azlan's first few years were spent in doctor’s appointments, in therapy waiting rooms, on planes, in cars. He was too often left to entertain himself. I told myself that independence is good, that he would grow up to be strong. But many nights I lay in bed crying out of a desperate desire to simply spend time with my son.

In the past few months, Mila’s disease has turned more steeply downhill. It’s still early in her new treatment, and in the meantime the brutal and inevitable progression of Batten Disease continues. At just the same time, Azlan’s development has taken off. His desire and ability to learn about the world around him astonishes us. But the stark contrast has been painful. The glue that connects Mila and Azlan - his stories and songs and her laughter and smiles in response - has just started to fade. She still lights up when she hears him, but our hearts drop when she doesn’t.

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Azlan may only be three years old, but he understands that what is happening with Mila is serious. Soon after Mila was diagnosed, Azlan introduced us to his imaginary brother Peter Max. He lives in California and has a pet dinosaur who goes to school with him. He teaches Azlan about asteroids, rainbows and baking pies. We hear about detailed adventures that they share. A few weeks ago, soon after we arrived in Boston, he told us that Peter Max died. I didn’t know how to respond. I calmly asked how that happened and he said that the ferryboat sank. We realized he had peered in at the news that night and heard that a ferry had infact sunk and passengers had died. But his story left a pit in my stomach. I have struggled with how much to tell Azlan about what is happening with his sister - just enough to grasp Mila’s difficulties and where they come from, but not too much to weigh on such a young soul.

 
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Through our painful journey, Azlan has been our guiding light. His excitement, like his sister’s, for even the simplest things in life reminds us of the fun in each day. Despite being away from his home and school, and quarantined from other kids to protect Mila from the flu, he never stops laughing and loving.  He tells us wildly imaginative stories, uses his “map” to guide us on walks, and makes up songs and dances that bring on the widest smiles even in the darkest moments.

On a cold rainy evening last week, we bundled up and headed out for a short walk. I wasn't in the mood, but we try hard to have Mila push her stroller at least once a day to keep up her walking. Azlan realized that we were tired, especially Mila, so he started singing "This little light of mine". My back ached as I walked with bent knees behind Mila who slowly moved each foot forward. But I joined in the song and before I knew it we were back home and we were all in a better mood.

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The other day, while we were making Valentine's Day cards, Azlan told us that Peter Max is alive again. And he’s back to sharing his adventures. I was so relieved that I pulled Azlan onto my lap and hugged him close. He smiled and yelled “let me go!”, and Mila giggled.

- Julia, Mila and Azlan's mommy

Between Hope’s Edge and a Miracle

 
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On the eve of Mila’s treatment, I am filled with many emotions. I have pushed so hard over the past year to get to this point, that there was little room left to think or feel. Now I am here, sitting on the hardwood floor of our rental house in Boston with my back against the wall. Mila’s treatment is scheduled for 12 hours from now. I hear myself breathing. I feel my chest expanding and collapsing. I look around the room and seem to notice every detail, perhaps because this is the first time I have allowed my eyes to drift in over one year.

Part of me just wants to hit the fast forward button and have Mila’s first treatment behind us. But something pulls me back. Deep down, I know that I am in a sweet spot that I may never be in again. A spot between hope’s edge and a miracle. Tomorrow, Mila will receive an injection of a new medicine that will go directly to her brain. It is experimental, which means it could be that breakthrough treatment that makes the impossible become possible. Or it could be a valiant attempt that just falls short. She could be the pioneer whose life is saved, or the one whose sacrifice helps those that follow.

 
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It’s hard to digest the different paths that Mila’s life could take from tomorrow on. Whenever I’ve found myself facing difficult thoughts, I look up to the sky. It clears my mind and lifts my spirits. So I went on a run in the snow today and looked up. I found myself reaching my arms out wide and asking aloud for Mila’s treatment to offer the best outcome for her, whatever that may be. I asked for the strength to enjoy this beautiful life, no matter what turn it takes. And I asked for help transforming Mila’s story into hope for families like mine crying behind closed doors.

I tell myself that I have done everything I could to give Mila the very best chance at life - though it is much easier to say than accept. I question what stone I have left unturned. But I realize we are fortunate that Mila was diagnosed when she was and not any earlier. Science is getting close to curing devastating genetic diseases like Batten. But genetic treatments are just picking up. We’re paddling into the big wave - it’s rising, we can feel it. After all of the trials I have followed and articles I have read over the past year, I can’t believe that we are actually getting up on our feet and riding that wave. It’s just barely on the rise, but we’re standing.

 
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Leading up to this day, I asked family, friends, and those following Mila’s story around the world to close their eyes and envision Mila healing. Since then, I have received beautiful messages of dreams and visions that people have had. A friend I met the month Mila was born, sent me an email that moved my body and my soul, and I will treasure it forever. As I sit on the floor, I pull it up to reread:

Dear Julia, I closed my eyes and I saw Mila, who had just been born, in the coffee shop in Boulder where my husband and I met your family for the first time. I saw Mila in Boston overcoming the difficulties of this new revolutionary genetic therapy. I saw Mila grow up and, as an adult, talk about her story in public. Like that, in just a few emotional seconds, I saw her life. I tried to tell her that I love her and assure her that her future is possible.

My eyes squeezed shut as hot tears poured down my face. Through the tears, I saw Mila’s rainbow shirt lying in a pile by the wall. Before putting Mila down to sleep tonight, I took a bath with her. I sat behind her in the tiny old tub and washed her body and her hair. I sang her the soothing melody Dona Nobis Pacem, the song I used to sing to her as a baby, and one my mom sang to me. In Latin, it means “Grant us peace”. It felt perfect for me and my sweet Mila, sitting in the warm water together, my body wrapped around hers. I felt the cyclone of positive healing energy from thousands of people praying for and thinking of Mila. It circled around us and engulfed us.

Tomorrow begins the next chapter of our life...

- Julia, Mila's mommy

 
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The Power of Hope

One year ago today, Alek and I sat in the hospital surrounded by a team of doctors who bowed their heads and told us that Mila had a fatal disease and there was nothing we could do. After a long week of tests, they had narrowed down the cause to two terrible diseases, one of which was Batten, but were waiting on the genetic test results. I wanted to scoop Mila up and run away from that place and make everything better. But I felt as if I were tied to the chair with steel cables and had tape over my mouth - forced to watch my little girl lose her personality and die before my eyes. Unable to do anything to save her.

 
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One week later, the test results came back confirming Batten Disease. I remember the deep wrenching pain in my gut. And then I remember a sense of relief that twisted into guilt. For two and half years, I had no idea what was happening to Mila. Doctors had referred to autism, special needs, cerebral palsy, traumatic brain injury, but none quite fit what they saw. The anxiety, worry and sleepless nights ripped me away from real life, from being a present mother to Mila and baby Azlan, from being an engaged wife. I read books and articles on the brain, spoke with parents of children with various syndromes, dragged Mila to doctors and therapists… all with no answer to the changes we were seeing. I carried around a scrap piece of paper on which I had scribbled “neurological symptoms?”. Below I listed “walking”, “talking”, “vision”, “motor skills” with examples of difficulties below each. I brought that piece of paper around with me to appointments for two years, adding to it as new symptoms showed up.

I felt like I was running a marathon, but no finish line was in sight. I kept running every day and every night for months, for years, barely able to pick up my feet and keep my legs moving. I felt lost, yet I knew I couldn’t stop. I took every road and back alley but to no avail. When we received the diagnosis of Batten Disease, I finally crossed the finish line - an unusual sense of relief that perhaps only a parent of a child with an unknown problem can appreciate.

I barely had time to feel that relief before I started on my next marathon, one that I am still running. Once I knew there was a genetic cause to what was happening to Mila, I felt there had to be a solution. It was clear that scientists were on the brink of stopping genetic diseases. I wasn’t sure it would be in time for Mila, but I had to give her the very best shot. I once again turned to articles, scientists and parent advocates across many neurological diseases. I asked questions. And more questions. Each little piece of information led me to another. And now, just one year later, Mila has hope.

 
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I remain cautious. Today may seem to bring us one step closer to a treatment, but tomorrow may seem to push us farther away. The possible treatment we await is new and complex, and the team of incredible scientists is moving faster than light. But there’s no room for normal setbacks as Mila’s seizures increase in number and intensity, and her laughter starts to fade.

But I remain optimistic as well. Where there once was darkness, there now is light. When Mila opens her eyes in the morning and says “mamma”, I kiss her warm neck and she smiles. Hope is what keeps us fighting.  

- Julia, Mila's mommy

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.