Please welcome Leah Trotter to our blog; an incredible parent and advocate for her son Jack. She's here today to share her raw emotions about her experience with her son and his rare disorder.
My story starts with a trauma. It is hard to think of your life in those lines. I never actively think, “wow, what a trauma we have suffered.” But the feeling is always there, in my gut, and it has dictated my thoughts and actions for over two years now. Before my son was born, I thought of trauma in a disconnected and almost fantastical way. Trauma was what happened on Grey’s Anatomy and it was usually wrapped up nicely in under an hour. Real life trauma feels like you are fighting with your own body to breathe in and out; like your heart is walking around outside of your body and you can’t get it back where it’s supposed to be. From the moment my son was life-flighted at 5 days old in status epilepticus suffering acute respiratory failure, I have been in a constant state of stress. I feel stuck in an endless loop of the fight-or-flight response. Where’s the exit and how do I get off? There really isn’t one so I think we are supposed to make our way out. I am ready to switch lanes and learn to thrive, advocate for Jack, and be happy without the feeling of impending doom lurking over my shoulder.
Jack was born seemingly healthy but fighting an invisible battle inside his little body. At five days old, Jack’s disorder reared its ugly head by putting him into status epilepticus (a dangerous condition in which epileptic seizures follow one another without recovery of consciousness between them). This caused Jack to suffer acute respiratory failure and he was life-flighted to the leading children’s hospital in our state. This was the first of many admissions for my newborn son and I was on pins & needles the entire stay. Admitted to the PICU, Jack continued to seize without an obvious cause. There was a flood of white coats in my son’s hospital room; we saw neurology, genetics, infectious disease, GI, blood disorder doctors, etc. Opinions lit up like wildfire and spread before I even had the chance to process the reality of the situation. PICU doctors started Jack on 4 different antibiotics to treat for Meningitis. It had not been confirmed that Jack had meningitis, but his CSF from his first LP was yellow in color. Forgetting his jaundice diagnosis, the doctor panicked and threw the kitchen sink of antibiotics at Jack, meaning he had to get a PICC line placed. Jack did not have meningitis but instead was diagnosed with an HIE (hypoxic ischemic encephalopathy) a few days later. We were told he had a significant brain injury, etiology unknown and unsearched for, and to prepare for a future with cerebral palsy and anti-epilepsy medications. It was presented in the most somber way as if our lives were over. Cue fight-or-flight in this mama. This chaotic hospitalization set the tone for Jack’s medical journey and my mistake was letting it happen that way. To keep with the driving metaphor, I was asleep behind the wheel. Looking back at myself, I see a doe-eyed and inexperienced mother who was completely unprepared for the harsh realities of life.
I think there have been butterflies in my stomach since the day I realized that my infant son had a real-life brain injury. Again, as sad and stupid as this is, a brain injury sounded like such a far-off fantastical thing…a thing that couldn’t happen to me, not my son because surely that doesn’t happen in real life. It will be a true miracle if I can ever forgive myself the indiscretions of ignorance. Anyway, it took five more months to figure out what was going on with my son. Jack was in and out of the hospital suffering from intractable seizures. He was on Phenobarbital, Topamax, Keppra, Fosphenytoin, and STILL having seizures. During a particularly difficult hospitalization at 12-weeks old, Jack began having gelastic and dacrystic seizures (aka terrifyingly creepy laughing and crying seizures). These are straight out of your worst nightmares and most commonly associated with a certain type of brain tumor so Jack was rushed for an MRS (basically a more in-depth MRI). Following this test, Jack’s neurologist diagnosed him with Mitochondrial Disease and told us that she not only saw an injury to Jack’s brain, but also atrophy that had begun to progress and would continue to, until he died. My husband asked if there was any hope for our son and the neurologist just looked at the ground and shook her head no. We lived with this for another 3 months before Jack was properly diagnosed with Pyridoxine-Dependent Epilepsy (PDE). This is a rare genetic and neurometabolic disorder that caused Jack’s HIE and all other symptoms/diagnoses.
The signs had been missed and my son suffered for 6 months unnecessarily. However, I learned how to fight for my son during this time. My fight-or-flight instinct kicked that doe-eyed mama into gear. The only problem is that I have been fighting ever since and I feel trapped by own response to these events and all I’ve experienced trying to help my son. I’m tired, but don’t know how to stop. I feel like that toy at the bottom of the toybox that didn’t get turned off it’s making noise, annoying everyone. You know the one.
Jack is 2.5 years old now and he is doing so well. His disorder is metabolic, so his strict diet dictates absolutely everything in our lives basically. He has some different needs and struggles, but he is also thriving. The past 6 months have been the most stable of the past few years. There has been so much to celebrate with Jack’s development, but I am hesitant to do so. The other shoe has always dropped with regard to Jack’s disorder and I live in fear. I know hospitalizations will be a part of our lives and I have accepted that and even know how to thrive there, but I find myself struggling to thrive during the “normal” periods. There have been more and more of these lately, and I want to enjoy them freely without the looming fear. I am struggling most with just being Jack’s mom. I have had to be his physical, occupational, feeding, and speech therapist for the past few years and will be for the rest of his life. I took on the job of healing Jack’s brain like his life depended on it (oh wait…). I am such a believer in neuroplasticity and my son is an attribute to its possibilities, thus I have been hitting the early intervention hard since Jack was tiny. As much as I am his cheerleader, I am also his drill sergeant. I’ve heard Jack’s physical therapist say to him, “don’t look at your mom because you know she’s not going to help you” in reference to completing a therapy activity. Poor Jack Jack! I think it’s stuck in my brain that if I am not actively fighting for Jack then I am giving up on him. But for the sake of myself and my entire family, I am seeking balance. I am learning to live instead of just surviving each day, and I say learning because it is a work in progress. It’s good to see what’s in my rearview, but what’s most important lies ahead!
I may always struggle to find balance in Jack’s care. I know there will always be battles with insurance for some of Jack’s services, and I know there will be ups and downs in his health. I can take all that in stride, but It’s daily life that I need to get better at. I think maybe being a good advocate for my child also means knowing when to stop fighting and just be his mom because the truth is that I’ve never really had the opportunity to just be “mom” to Jack. That was taken away from me early on, but it’s up to me to take it back. This journey has taught me how to be the mom that Jack needs. It’s taken a long time, but I finally see my exit. I’m ready to follow Jack’s lead and spend less time looking over my shoulder.
Follow along with Leah and Jack on Instagram and their website.