I’m living one of my worst fears. Most people’s worst fear – that something terrible would happen to your child. That you would have to watch helplessly as they suffer. That their life would be hard and filled with pain. That they would struggle to do tasks we take for granted every single day. We have been facing these fears since one morning last April.

I laid Landry on her boppy lounger on the floor and sat down next to her to pump. My incision was healing, but I couldn’t believe how hard the recovery had been. I was still bitter over having to have a c-section due to her breech positioning. Her older sister was at daycare and her daddy was at work. We were 5 weeks in and starting to get the hang of life. She was a fussier baby than her sister had been. She didn’t like a lot of movement - changing positions seemed to make her very angry. But other times, she looked like a typical newborn. But not this morning, this morning I knew something was wrong. A pit formed in my stomach as I watched her present with seizure-like symptoms and my mind flooded with all the other worries and thoughts from the past 5 weeks. I knew it was bad, but I had no idea how bad.

The most traumatizing moment of my life was in that hospital as she was transferred from the pediatric floor to the PICU and intubated. After an uneventful first night, she began having the same symptoms as the previous day and they were unable to control the episodes until she was intubated and sedated. She was treated with anti-seizure medications; her EEG was clear for 24 hours and she was extubated. The symptoms returned shortly after. Once again, her EEG was clear. We left the PICU after a 6 day stay and long list of differential diagnosis while waiting for test results and genetic panels.

We waited through continued episodes. Each one adding trauma to trauma as we watched our newborn baby’s eyes move in every direction, lips smack, breathing labor, and her extremities move without permission. We were completely helpless to do anything for her. Outside of those episodes she was learning to smile and we were falling even more in love with her little personality. I was pouring through every medical article I could find with key words: seizure, dystonia, seizure-like movements in newborn, learning all I could and forming a rather long differential diagnosis list. Of course, favoring the diagnoses that were left behind in infancy. Fitting each one to our lives and formulating plans for how we would conquer it, how it would be okay.

As the episodes intensified, I sobbed in the quiet hours of the night while everyone was sleeping, clutching Landry and praying to keep her. Time seemed to drag on. I was waiting and watching anxiously for the next episode; longing for answers, and yet terrified. Every appointment I braced myself for words that would change our lives forever.

Then, one day we heard them. Genetic panels were back. “There is an abnormality.”

I can still hear his voice in my head and my mind responding “no, no, no, no, no…” as I began begging God that it would be inconsequential: the mild dystonia I researched, the treatable epilepsy…the glass floor I had been walking on for the past 5 weeks began to crack…our world began to shift… nothing would ever be the same.

Her neurologist wasn’t familiar with the gene. It could cause one of three different neurological disorders, most likely this underlined one. Then he handed us the piece of paper. Alternating Hemiplegia of Childhood.

I spent the coming days and nights reading every research article I could find with those words in it, every foundation website, searching support groups for families, stalking their pages to get a glimpse of their child. Gathering any and all knowledge I could on those 4 words. Initial denial began to subside, the more I learned the more devastating these words became. This wasn’t going away. It was worse than we had imagined. There is no treatment. There is no cure.

I learned that Landry is literally one in a million. This rare genetic disorder is characterized by attacks of paralysis, dystonia, rapid eye movement, and, sometimes, seizures. These attacks can be caused by overstimulation. For Landry, that would mean when she gets too tired, is startled by a loud noise, or when she eats carrots, an episode would ensue. Her eyes will move quickly in every direction, while her extremities move in painful contorted ways. It would also mean that when she gets really excited when going into the arms of a family friend or when being tickled her whole body loses the ability to move. One minute our sweet girl is smiling and rolling, and the next minute her gaze is fixed and her consciousness altered. We are frozen and helpless with each different episode, waiting and praying for our girl to return to us.

What is even more frustrating and scary is that while AHC looks like that for Landry right now, it can all change in an instant. It could affect her breathing and her ability to swallow; or it could even result in sudden and unexplained death. Just because it looks one way today doesn’t mean it will look that way tomorrow. Alternating Hemiplegia of Childhood is a cruel thief - stealing life from our baby girl.

I took breaks from reading only to sob uncontrollably and then try to put on a brave face for our 2-year-old. I cried for her. For the immeasurably many ways her life would be harder now, and for the adversity she was going to have to face for her sister and because of her sister’s condition. For typical things she would miss out on and the difficult things she would now be exposed to.

I cried for our family. For the vacations and family outings that all of a sudden seemed impossible. For the many hours we would spend split in two.

I cried for my marriage. For the weight placed upon it, the increased sleepless nights. The financial and emotional stress it would have to endure.

I cried for me. For the loss of my career. For the loss of friends. For the loss of life outside our home. For the loss of every version of the future I had dreamed of and the completely different path we were now on. For the fear that would now be my constant companion. For the pain that would plague me as I watch my child suffer.

And I cried for Landry. For how hard she would have to work for the littlest of victories. For the pain she will feel over and over again. For how different her life would look. I hated it for her, and I cried out to God in anger at what He had chosen for my little girl.

Initially, I thought the sadness and anger would swallow me whole. I didn’t want this for any of us. I wasn’t built for it. One substitution of an amino acid called proline for one called serine at position 323 on the ATP1A3 gene - one tiny substitution and such catastrophic results. I knew it wasn’t as simple as a careless maker; no, this was on purpose. Our intricate, all powerful and all-knowing God made her this way on purpose. While that has brought me great peace, it also brought me great anger.

My working knowledge of the world of special needs left me unable to just accept that things we will be alright. I wasn’t just handed a diagnosis; I was handed a million different realities. The truth of this particular diagnosis is that everything will be fine for a bit, and you will never know when it won’t be anymore. The reality is not as simple as loving her no matter what, that is a given. The reality is that our life is going to exponentially harder than it was prior to hearing those four words. There will be trauma with each episode. There will be career loss and depression. There will be anxiety. There will be an 80% chance our marriage will end in divorce. There will be isolation. There will be lost relationships and feelings of abandonment. There will be a lack of understanding and support from people that were closest to us. There will be equipment and therapies and doctors’ visits. There will be phone calls and phone calls and phone calls. There will be fights to receive services we wish we didn’t have to have in the first place. There will be times we would do anything to just feel like ourselves again. I could see our whole future play out in so many different ways, and each of them different than I had ever imagined.

Life since diagnosis has been a mirage of hard decisions and a delicate balancing act. Environments where we can’t control stimuli are daunting. Even simple tasks layered with this diagnosis become difficult. I loved scooping up my older daughter and going on little adventures, even just a quick Target trip. I hate that I can’t just put both girls in the car and run errands. One day I took the girls for a walk. The next day I tried and we didn’t make it down the drive before I noted Landry’s fixed gaze and unresponsiveness. Last week Landry mastered independent sitting. I cried and we celebrated. Then she had an episode and can no longer sit independently. It isn’t a single injury she will heal from; it is a constantly changing, unknown trajectory. Each day looks different than the last. She won’t get better with age. There is no stability, we are not safe.

That’s where we are - where no one wants to be. A place where the future is more unknown than ever. Where we are constantly watching Landry’s eyes for tell-tale signs of an impending episode. Where we constantly balance pushing Landry for her development with avoiding episodes; and letting her experience life with shielding her from uncontrollable environments. We are living out one of our very worst fears. My anger has given way to fight. Fight for the best possible life FOR LANDRY. Fight for a cure. Healing, this side of heaven, is an actual possibility through gene therapy. A research movement led by desperate parent organizations to save our children’s lives.

My fear has given way to hope. God has not forsaken Landry, or us. He made Landry in His infinite power and wisdom and sovereignty. He made her, knowing He has already conquered Alternating Hemiplegia of Childhood and that the tears we cry will not be in vain. On the hardest, darkest days - when hope is the smallest glimmer in the distance and this life seems unbearable, I hold on tightly to the truth:Landry will be healed. Completely. Fully restored. In a magnificent way that I cannot begin to fathom. This injustice was righted long ago. If not in this world, in the next, Landry will be made new. That is where my hope is found.

You can learn more about AHC and Landry here and follow her journey on Facebook and Instagram.

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Katelyn and Landry "This Side of Heaven"

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YOUR STORY - LIBRARY FIVE

Katelyn and Landry "This Side of Heaven"