Decision fatigue is probably the hardest part of being a special needs parent, followed by the stress of constant vigilance. I hear people tell me that I should “take care of myself,” and that I should pray, and I see the images they invoke: a woman getting a massage or pedicure or going on a long hike by herself without getting attacked or falling into a ravine, who, after the rigorous hike or relaxing massage during which she did not worry that her children with nonverbal autism were overwhelming their caregivers and cutting a path of destruction through the house out of anxiety over her absence, or just out of the salon and smelling chemical-fresh, will make some 40 prostrations in an ornate chapel by the light of oil lamps, her face glowing beatifically as saints and angels light her way with their wisdom flashlights. The stressed out woman in the advice has a full-time staff who cooks and cleans, and her children somehow never trash the entire house at least five times a day because they’re learning about gravity and don’t understand object permanence.
Deep breaths. Feeling centered?
You know, moms with special needs kids, you need to get out more. Have a glass or two of wine, and laugh with all the friends who are willing to adjust to your bizarre schedule and decision fatigue and unpredictable family that makes planning hard and stay within five minutes of your house and talk about something other than how competitive they are about their neurotypical children and their stressful lives of hiking and baking. Those people get out every week, if not every day, and they have forgotten you already, which is why you get out once or twice a year, maybe. Except, if you do go out with other people somehow, don’t drink the wine at all because you might need to be up with a child for several hours in the middle of the night, or God forbid, you might need to go to the doctor/hospital, and you need your wits about you. Besides which, you don’t want to turn into an alcoholic on top of all the other things you have to deal with. You don’t have time to love wine. You have time to love cold deli meats and gluten free crackers over the sink. You have time to go to a park with a fence and keep people from running into the street every time a neurotypical family shows up and leaves the gate open.
Moms of kids with special needs never read their daily prayers and scriptures on the toilet because it’s the only room the toddlers sometimes don’t break into. This mom whom you advise to pray more and to take care of herself never sits on the toilet in her prayer corner and simultaneously hugs a crying preschooler who thought she was gone forever when she shut the door and he heard the water running, potentially whooshing her away.
She doesn’t have her best prayers at 2am when she still hasn’t managed to get to bed, and her child needs to be squeezed so he can find his little hands and feet and go back to sleep, and the lullaby is “Agni Parthene” (a hymn to the Virgin Mary) or the Trisagion, and he hums along, spelling nonsense words under his breath. “C-A-N-A,” he says, referencing the first miracle. “Water!” Well, almost, little one. He is half asleep, and sleep spelling has different syntax. There is no glowing face here, but he gets warm and heavy and starts to breathe the soft song of sleep. She thanks the saints and angels who helped make that happen.
She kisses the Panagia icon by the light of her cellphone and reads about a saint with one eye, on a phone app dimmed so as not to wake the other occupants of the bed. By the time she reads the Gospel for the day, that one eye has a slow blink, and the first birds are thinking of waking up already. She drops the phone on her eye and brushes it under her pillow, the images of the Lord’s words burned onto her left retina: Come to me all you who are heavy laden.
She lights candles and forgets what she was doing while she watches them burn. When she comes back to herself, she sighs and shakes her head. “I’m like the thief, Lord,” she says to Jesus. “I know better and I still do stupid things. I’m scared and dumb, but I want to be with you.” She knows she’s supposed to be teaching her kids all kinds of words and prayers, but mostly she hopes they catch her gritty snapping turtle faith. You don’t have to be eloquent to ask for mercy.
Someone cries, and she rushes to soothe them. The baby won’t stop yelling to come downstairs, but she’s changing someone else’s diaper. The house is louder than the Seraphim hollering in the Temple, “holy, holy, holy,” and she thinks of God’s hem filling the whole room and the glory of God overflowing over the whole world, and how on earth is that baby putting out so many decibels when she’s only 2?
She tries to think good thoughts even though sometimes she binge watches superhero shows on Netflix just to see people fix things in under an hour. Strength in adversity is glamorous when it doesn’t involve housekeeping. She hopes that next time when she picks up all the paints and toys and blankets from the floor and says to herself, “behavior is communication,” that the mess cleaning will inspire love.
She will go to the children who wreck the house and never stop shouting because they don’t understand volume control yet, and she will kiss their heads. Their hair smells like incense. They’re the burning bushes surrounding her tired, bare feet. She will sniff the sour smell of their sweaty heads after their summertime naps, and she will say, “This is holy ground.”