I was cleaning up after our fourth of July party enjoying a slow morning with my 18-month-old Quincy as I pushed her around, I began daydreaming about another baby wondering if being two days late meant our family might grow sooner than planned
Quincy and I stopped at the bathroom. I took the test, laid it on the counter and continued pushing her. I don’t know what I hoped for, but as I saw the two lines, I smiled and thought with relief, ‘This truly wasn’t our own plan.’ I scooped Q up and told her what a good big sister she was going to be and naïvely promised her nothing would change. I had no idea just how right and wrong I was.
Landry was born via s-section in early March due to breech positioning. She took our breath away from the moment we laid eyes on her. She was stunning. She had big blue eyes like her daddy. She had dark hair like her sister, though we quickly learned she was more temperamental. She didn’t love a lot of movement changing positions seemed to make her very angry. My career as a physical therapist made me ever watchful in fleeting moments, her tone would catch my eye. Little jitters would nag at me. Her blood sugar was tested multiple times in the hospital. I remember asking her paediatrician, ‘Are you sure you don’t feel there is anything neurological going on?’ He was sure, and my therapist friends were sure, and most of the time, so was I. But in some moments, I still felt a familiar sinking feeling…
5 weeks later, I laid Landry on her Boppy Lounger on the floor and sat down next to her to pump. My incision was healing, but I was still sore, and bitter over having to have a c-section. Quincy was at daycare and her daddy was at work. Landry was still a fussier baby, but we were finding our groove as a family of four. I had suppressed my worries and chalked them up to my overactive therapist mind. But not this morning. This morning, I knew something was wrong.
I watched Landry present with seizure-like symptoms. Every nagging worry came rushing back to my mind and I knew it was bad, but I had no idea how bad. At the hospital, we were promptly admitted. Her EEG that evening was normal. The next morning, she was sedated for an MRI. As we met her in recovery, I asked if her jerking arm was normal for coming out of sedation. I was told it was.
Then, her eyes began to move the same as the day before. The next few hours would hold the most traumatizing moments of my life. The physician rushed in and treated her with multiple doses of seizure rescue medication, to which she did not respond. A doctor from the PICU took over and more nurses flooded the room as I watched from behind them in horror.
When they beckoned us to her side, I held her head and did not let go, pleading with God to protect her brain and make the seizure stop. We walked quickly with the team as she was transferred to the PICU. She was intubated to protect her airway as they gave her a larger dose of medication to stop the presumed seizure. Her 24-hour EEG was clear, and she was weaned from the ventilator and extubated. Her symptoms returned shortly after.
Our newborn scary episodes led to a diagnosis that changed everything leaving us heartbroken and terrified. Now we face each day with love courage and hope for Landry even when the future feels uncertain.
I could see our whole future play out in so many ways, and each of them different than I had ever imagined. Life since diagnosis has been a barrage of hard decisions, delicate balancing acts, grieving, and healing. I stepped away from a career I loved and a program I built to care for my girls. My husband started a business while working full-time to provide for our family. We constantly balance, pushing Landry for development gains while avoiding episodes and letting her experience life, and shielding her from uncontrollable environments.
I see patients occasionally and teach a little at a nearby university. I am so thankful for my education and the way it allows me to care for Landry. I am still trying to figure out how to build community and care for myself and my marriage. I joined the board of an AHC parent-led organization, one of three that have collaborated to push cutting-edge gene therapy research into fruition to end AHC. We are doing everything we can to raise awareness and funds to heal Landry on this side of heaven.
Landry is 20 months old now, and such a light in our lives. Her smile brings unparalleled amounts of joy. She fights for milestones, loses them, and then fights again. She is the hardest worker I have ever seen. She loves watching her sister and pulling her hair, being chased by daddy brings big giggles, and she loves her momma fiercely. She loves being outside and in the middle of any activity, even though she may pay for it later, physically, with eye movement or full-body paralysis.
We are thankful for every moment with her and know we are not guaranteed the next. After Landry’s diagnosis, I thought our world was ending. Life as we knew it certainly did. I imagined being a lot of things: a faithful wife, a devoted lover of Jesus, a creative and thoughtful mom, an ambitious therapist, a loyal friend. But a medical mom and advocate was a call I did not want to answer.
Watching Landry suffer is heart wrenching, but I faced moment with love, and courage. Though our life is hard and different, God is giving us hope, strength and courage in the journey.
