I am an unnervingly present person. I rarely think about the future. I’m too caught up in the now to worry about what has to be done tomorrow. For some reason, pregnancy launched me into a preparatory nightmare. I couldn’t be too equipped. I not only read infant books and “how to keep your kid out of therapy” articles, but I also read books on raising teenagers—just in case my kid walked out of the womb with a driver’s license. But in all my forward thinking, I never thought about having a kid who couldn’t go to Chuck E. Cheese.
Ellia has an illness—the kind where no one really knows what’s wrong. The kind of disorder that only 15 other people in the world have and that affects no one else in the United States.
Ellia stopped walking one day when she was two. The doctors were convinced she was faking, and a nurse put her in a room and told us that we wouldn’t be seen until she stood up and walked. With her kidneys on the brink of failure, she somehow recovered a couple weeks later and learned how to sit up, stand, and walk again.
This fluke illness came back with a vengeance. After a third paralytic episode and several near-death moments, Ellia was diagnosed with an extremely rare, life-threatening genetic disorder. Her skeletal muscle structure can break down when she gets any random, unpredictable illness. She loses muscle function from the neck down and, often, she risks multi-system organ failure. The pain is unbearable. All the doctors can do is offer support care. There is no known cure or treatment, and prognosis is uncertain.
Because of her illness, Ellia isn’t supposed to be around germs. She’s not supposed to climb in the PlayPlace at McDonald’s. She’s not supposed to go to public school where parents (like me) give their kids Tylenol to hide the fever and send their kids to class. And she certainly can’t go to Chuck E. Cheese. There’s not enough hand sanitizer in the world to clean that place up. All of a sudden, the world is a loaded germ gun pointed at my kid.
Despite our best efforts, our old-souled five-year-old knows what’s going on. She knows what ICU means. She has asked me to look her in the eye and tell her whether or not she’ll live to be a mommy.
The question makes me simultaneously hot and cold. I know how to put a kid in time out. But I’m not prepared to navigate this. I don’t know how to talk to her about death. I don’t know how to walk her through social isolation and fear.
Facing the Question
The past few years have been a mixture of the frightening known and the debilitating unknown. I might as well use my parenting books as toilet paper. It has sunk in that no amount of preparation can help traverse these waters.
I don’t always feel completely unprepared. After three years, I’ve become adept at taking an often nightly temperature and checking for leg pain and outsmarting Ellia when she’s afraid to tell me it hurts. I’ve become better at not crying when the IV goes in or when she first sits in her wheelchair. But I’ve never gotten used to the part where I pack the bags to take to the hospital.
It’s an out-of-body experience, light-headedly packing clothes and toys, thinking of what we’re walking into—the pain, her questions about why I can’t make it stop. In some ways, I’ve learned what to anticipate. I know the nurses and doctors who adore Ellia. I know Ellia will want to watch Gnomeo and Juliet 30 times in English and twice in Spanish. But my familiarity with the situation doesn’t eclipse the unknowns. I don’t know if we’ll be there two days or two weeks. I don’t know how her kidneys will respond or if her lungs will collapse and she’ll be intubated. I don’t know how long it will be until she eats or takes a bath or gets to go to the playroom.