By Marilyn Maloney
I’ve been riding a knife edge for too long. I have always worried, mostly about nothing, death, being alone when I’m old, some odd pain that could be a blood clot. Or not.
My daughter has been having more seizures lately. She is nine and lives with Leukodystrophy, causing her cerebral palsy, seizures, impaired swallowing, and overall low muscle tone. Researchers suspect they have found the genetic cause, and will tell us as soon as they prove their suspicions. Four long years have gone by since their discovery, and Maddy has developed daily seizures that can last up to a minute. Lately they have increased in intensity. Instead of a barely noticeable eye flutter, they come with a grimace and outstretched arm.
My son wakes up sniffling, followed by the telltale cough. His eczema puts his IgE levels 50 times higher than they should be, so the blood tests say he’s allergic to everything except cocoa. This year he developed asthma. The ER had a teddy bear on his bed when he was admitted, and “Jack” the bear sleeps with him now.
We pump Jimmy full of five different medications when the cough shows up, following his Asthma Action Plan from the Immunologist. Steroid inhaler each morning and night, steroid nasal spray and Zyrtec before school, albuterol before recess, and we pray we never need the Epi-pen. I label all his foods and send him “emergency snacks” in case he ever forgets his lunch. He has a pre-K crush on the school nurse. And the teachers like him, so he already ran out of emergency cookies.
I’ve had random tingling in my face for a few months that feels like a nerve ending firing, a second nerve on the other side of my face receiving the signal and sending back a vibration. I’ve been skipping my B12 shot, something that helps after 29 years of undiagnosed celiac disease, but my face has never tingled before. My doctor says take my shots on time and come back if my face doesn’t calm down.
In my job, I am able to leave my desk at any time if one of my children is sick or has a doctor appointment. I can make up my work at night, something I do regularly. The guilt of ignoring my family as I work on my laptop couples with the guilt of 2 hours lost for the latest pediatric appointment. I appreciate the flexibility, but my company was purchased by a larger company early this year and my coworkers and I have felt stress like never before while waiting to see who survives the merger. As workplace rumors swirl, I furiously work toward deadlines that may or may not be important for my future employment. My neck hurts for weeks when I turn my head after too much time staring at a screen. The chiropractor and massages help only a little. I wake up at 1am, sometimes 4am, wondering if this is what a heart attack feels like. I walk around, drink water, eat a banana to counteract the salty bag of chips I polished off before bed. I remember reading something about balancing potassium and sodium.
Celiac disease and food sensitivity has morphed into a paranoia about food. Gluten, dairy, and now soy, all make me feel sick, shaky and weak. The difference when I eat these foods is so strong I have anxiety about eating new foods. After watching my son like a hawk to make sure he doesn’t eat any of his allergens, in the back of my mind I have to remind myself, I am not the one who has anaphylactic allergies. I remember his lips swelling when he was one and tried to drink from the dog’s bowl. The rash on his neck when I breastfed him and ate soy. His eyes swelling shut when he tried to help me dust with an old Swiffer full of dog dander on Christmas Eve.
My parents fly each year from New York to Texas to celebrate Halloween with the kids. They leave the cold and wet October for 90 degree weather and leaves that go straight from green to brown. We go to Walmart because it’s closer than my beloved Target. I get a bunch of toys for my son to trade for his candy, and two shirts for Maddy who has a feeding tube and will be going along for the ride in her stroller. My dad looks for a washer to fix our leaking garden hose and my mom buys material to cover a rail my dad made so Maddy doesn’t fall off her 2nd-grader sized changing table. My parents pay and won’t take my money.
At home, Jimmy coughs. He wears a new shirt before I can wash it. I make a mental note to check his skin later and promptly forget. The mold that irritates his immune system is high. He runs through high grass with my dad and laughs and forgets about our check of the daily mold report. We walk in the park at 3pm, when the sun feels hottest, Maddy in her stroller, and Jimmy on my dad’s shoulders when he gets tired from walking. My 62 year old dad climbs a tall tree and we watch migrating monarchs flutter through the branches. Then the kids sleep and my mom asks for things to do. Sitting too long hurts her back and she stands at the stove, scrubbing a mixture of vinegar and baking soda with a toothbrush. She mentions that my dad stopped drinking coffee to help his stomach aches and lost 10 pounds. Turns out he always had a donut or cookies with his coffee. I remind them to take B12 and make sarcastic remarks about being the only one in the family with celiac. A gluten free diet would probably make one or both of them feel ten years younger, but they have no fear. Any symptoms they might have are brushed aside as they are busy with life. My dad sniffles with his own allergies to grasses and pollen, all the while saying, “Why is everyone in the house? It’s beautiful outside!” We go for another walk. When did my neck stop hurting?
My parents watch Jimmy while my husband is at work and I take Maddy to the doctor. While we wait in the examining room, I sing to Maddy and she vocalizes with me. I anticipate the neurologist prescribing a new medication at this visit. Accepting defeat after the ketogenic diet and current seizure med fail to conceal the spasms, I describe her symptoms. The doctor asks if the seizures are more noticeable, as opposed to increasing in frequency. This is true. She tells me to increase her current medication, as she has been on the same dose for years. We have the option to add, but can do this later. She also describes an epilepsy conference she attended and I ask her questions about CBD oil. She is not opposed to the prescription pharmaceutical that may be available next year. We have a plan.
Maddy tolerates her rainbow unicorn costume and enjoys the stroller ride around the block. Jimmy is ecstatic to run around with the neighborhood kids collecting candy in his Freddy the Bear costume. He yells “Halloween!” at the doors when he forgets what to say. When the door opens, he accepts his candy, stands and watches other kids get their candy, and then says, “Thank you. Happy Halloween!” before turning around. He skips one house because, “Those dogs in the house want to get me and there’s probably dog hair everywhere.” A few houses from the end of the block he says, “I have tons of candy. I’m going home.” We trade candy for toys and clothes and everyone is happy. Jimmy and my dad have “pretzel time” on the couch – Jimmy eating gluten/dairy/soy/egg-free pretzels while my dad eats pretzel crisps.
Maddy heads to bed early and Jimmy falls asleep on my mom’s lap, forgetting his nighttime meds. In the morning we pump him full of immune support, and send him to school. Jim takes Maddy to the dentist and I drop my parents off at the airport. I come home to the same house, with the same old problems, only they’ve been altered. No weakness or tingles from Halloween candy I ate yesterday. My kids are okay. I order a Hepa air filter on Amazon and open all the windows.
Marilyn is an engineer and late-night medical journal reader. She lives with her hero of a husband, beautiful puzzle of a daughter, and her cheeky son who likes to jump off the furniture.