In the days immediately following diagnosis, I wept from a place deep inside me and in anger and sadness cried out over and over: I’M NOT BUILT FOR THIS.
After 5 weeks home with our second sweet baby girl on an ordinary April morning, her eyes began moving quickly from side to side, her mouth opening and closing in a repetitive rhythm, her head turned hard to one side with her extremities moving in tight patterns. We, and everyone else, thought she was having a seizure. Little did we know that the reality would be much worse.
Multiple EEGs, a MRI, a PICU stay, countless tests, two ambulance rides, and two genetic panels later we heard the words: Alternating Hemiplegia of Childhood (AHC). Those words shattered life as we knew it, nothing would ever be the same.
Landry is one in a million. AHC is a rare and devastating genetic disorder characterized by attacks of paralysis, dystonia, rapid eye movement, and sometimes seizures. Episodes can last minutes, hours, or days. Overstimulation can trigger episodes. There is no treatment. There is no cure. Each episode can lead to brain atrophy or sudden death.
My heart fought what God had called us to. I am not built to watch my daughter suffer through episodes of uncontrollable eye movement and painful, involuntary movements. I am not built to watch her struggle through attacks of full body paralysis. I am not built to survive this deep grief. I am not built to survive with this level of constant and indefinite sacrifice, instability, and insecurity. I am not built to see the silver linings. I am not built for this immense isolation.
Days continue to pass, and some seem unbearable. I am learning that the difference between what you think you can do and what you will do are only separated by what you have to do. When an episode starts, every fiber of my being wants to hide, I want to close my eyes and not watch my baby suffer. But He continues to build me. I do not hide. I face my fears so that Landry will be held and known and loved fully in her hardest moments. When she loses the ability to move, I move for her. I will be her voice and greatest advocate. When she loses skills, I work with her and celebrate each milestone as many times as it takes. I will hold her when she is too big to be held. I will speak to her and listen and encourage the rest of the world to do the same. I will open up our lives to educate others on AHC until our sweet girl is cured. It will be my greatest privilege.
I did not know it, but I am being built for this, for God’s glory, FOR LANDRY.