living

In 1985 if your baby is born not moving and unable to swallow, you will be told by his doctors that it's just a matter of time; he will die because his brainstem is damaged. Or, if he doesn't die, he will need too much. He will suffer, you will suffer, your marriage will suffer, your two daughters will suffer.

You and your husband will cling to each other beside the isolette. Your friends will drive sixty-five miles from your small town to visit you in the hospital and tell you they will help, any way they can.

You will bury your nose in your baby's downy hair and take deep breaths. The scent of him will remind you he is irresistible. When you whisper in his ear and stroke his head, he will sigh, relax, and flush. Your husband says, "What if we take this one day at a time? What if we look to our son to tell us whether or not he is suffering?"

breathing

In the 1980s some babies with respiratory insufficiency will survive because of new lifesaving drugs for premature lungs, technology that helps them breathe, and home monitors that alarm when a baby doesn't take a breath for twenty seconds. At home, your baby needs a suction machine to keep his airway clear and monitors to tell you when he stops breathing. You will ponder the fact that your child is alive largely because you live in the United States. You will remember that you were given the option not to use technology to save him. You recall the baby boy in the crib next to your son in the NICU, who also couldn't swallow, whose parents chose to forgo clearing his airway so he could keep breathing. That baby, born the same day as your son, will simply disappear. When you ask, the social worker says his parents were brave and decided to let him go. You will feel sick and wonder if you're not brave enough. Your heart will ache for that family. Had his parents heard the same speech as you, about everyone suffering too much? How much suffering is too much? Where is the line? Is love sufficient recompense for suffering? How do you weigh these things?

Your child will get stronger as he grows but will still be frail. He tires easily by taking too many shallow breaths. By the time he is five, he sees a specialist who suggests a breathing machine at night to give him a rest from the effort of breathing with chest muscles that don't expand properly. The first morning after being on the breathing machine overnight your son climbs out of bed and back in again, something he's never done before. He looks brighter and more animated. You don't yet realize that a machine like this will help him for the rest of his life.

You will discover a pediatrician whose special interest is kids with disabilities. He will understand your child's susceptibility to respiratory illnesses and offer to make house calls so you don't have to be in a waiting room with sick kids. He gives you his pager number so you can call him directly. Those kindnesses will feel like balm, because you have been released from putting winter clothes on your sick child, strapping him into his wheelchair, tying the chair down in the van, driving him across town, undoing the chair and the clothes when you get to the clinic, then repeating the process to go home.

eating

When your child hovers between life and death in the NICU, it will feel important to you to pump and save your breast milk and transport it to the unit so the nurses can send it through a tube into his stomach. You will see him grow a little each day because of your milk in his belly. When his primary nurse suggests that it would be okay to stop this and put manufactured formula into him, you distrust her, especially when she says, "It really won't make much difference."

Subtext: He will die anyway.

After you take your baby home with a feeding tube surgically placed in his stomach, every day you will do the exercises the occupational therapist recommends to help his mouth, tongue, and swallowing muscles get stronger. When you see a few coordinated swallows, you will yearn for more progress.

One day you will remember that somewhere you saw a reference to a swallowing center at Johns Hopkins University in Baltimore. You will call this place and speak to a secretary, asking for the physician author of the article. She will tell you that he is semi-retired and has only been stopping in a couple of times a month to pick up his mail. As you begin leaving a message, she will shout, "Wait, he just walked in!" The doctor will talk to you for an hour about your son. At the end of the conversation, he will ask where you're calling from. When you tell him the name of the small Minnesota town, population 117, he laughs and asks you if you know Bud and Ruth, who live down the block. It will turn out that he'd gone to the same church as Bud and Ruth in Minneapolis, years ago. He will chortle as he says, "It's a small world and a good one."

After subsequent conversations with you, this doctor will fly to Minneapolis from Baltimore to do a seminar at the children's hospital where your son is seen. The doctor will introduce a new test called a video swallow to the hospital staff. Your kid will be the first in the region to be tested with a video swallow test, a live X-ray that visualizes liquid as it travels down his throat, to determine whether it is going into his stomach or his lungs. The liquid splashes into your child's lungs, and the doctor from Baltimore will tell you kindly that this is not a good sign.

Over the years you will look at different kinds of nutrition for your son, who will forever need a feeding tube. Because to you "food is love," you will work at putting more love into foods that can be liquified and poured through a tube into your child's stomach. You will puree food for a couple of years, getting recipes for balanced meals from nutritionists. You stop because you can't keep doing it while working and taking care of your family in other ways. But you will look at ingredients in all the liquid formulas your insurance company covers and note that they use large amounts of high fructose corn syrup, a product you do not allow your other children to consume. You will work for months to get the insurance company to pay for a healthier formula with the help of your son's GI doctor and a nutritionist.

By the age of eight, your son will learn to give tube feedings to himself, bracing one arm on a table to hold a large syringe and using the other to pour formula from a small container. He enjoys this, often lifting the syringe to his nose to smell the vanilla and raspberry flavors. He grows well. But holidays and birthdays will remind you that the workaround for not being able to swallow—tube feeding—still excludes your son from sharing food with his loved ones.

moving

Your baby doesn't move for his first months of life. But the neurologist notes that his tongue moves, and his eyes jiggle a little. Nothing else moves, except his chest, sometimes imperceptibly, rising and falling with small breaths. You will carry him through the house, rock him and sing to him, and play peek-a-boo, covering his eyes with his hands. One day, when he is two-and-a-half months old, you see his eyes tracking you in a mirror as you give him a bath in the baby tub on top of the dresser. When you tell the doctor you saw this, he will wince slightly and say, "Maybe, maybe not. We don't know if he has any voluntary movements, or if he knows what's going on." But you know he does.

A physical therapist will make home visits from the very beginning and teach you that it's imperative you move your baby's body for him. This man will visit twice a week after his regular job, pushing your son's joints a little further each time to stretch them from their tight, still positions. He teaches you and the home nurses to move every joint each way it moves, three times daily. He tells you this is essential and will help your son move later—when he gets stronger.

You will find that the state Insurance Commissioner is willing to challenge your health insurance company after it denies the claims for physical therapy by calling them "custodial." He will say to them: "If you want to keep doing business in this state, you will pay for this."

Your eight-month-old will look like he might finally be reaching for things, but is he? You lay him on his side on a blanket on the living room floor and put pillows behind his back. You balance one green tennis ball on top of two others, and squeal as you knock them down. You reassemble them in front of him. His arm will move slowly forward until it knocks the balls over. You squeal louder each time he repeats it, because now you know he wants to do this and can.

You will think your five-year-old is cute and industrious, using his energy to slowly wheel his small chair across a room, that this is important exercise for him. When, at a conference, you proudly show a photo of your skinny kid in his wheelchair to Ed Roberts, a founder of the Disability Rights movement, you are shocked when Ed shakes his head and growls, "He needs power."

You squeak, "What?"

Ed will say, after a puff on his ventilator, "Your boy needs power. He needs to decide where he wants to go and be able to get himself there." A few months later you will bring your boy to a park with long paved paths so he can try out his new power chair. Your son will ignore the paths and take off across the grass, chasing a squirrel at top speed.

When your son is twelve, and you and your family are at a camp in Florida for kids who use ventilators, your heart will catch in your throat. You'll meet a boy your son's age, who started out with the same diagnosis as your son, only nobody moved his joints to keep them flexible. This boy is frozen in space, atrophied limbs reaching out at all angles, not moving at all. He will use his eyes to spell, picking out one letter at a time, on a board. You will glance at your own kid, zipping toward the stage show in his red power chair, cranking the joystick, and you will rue such crucial inequities in children's lives.

communicating

At twelve months of age, your baby's cooing will be soft, but the frequency and pitch of his sounds will tell you what he loves, what he despises, and everything in between. When you have to decide between that voice and fewer pneumonias, you and your husband will know that neither choice is right or fair. Neither choice respects his small body's integrity, yet one might contribute more toward his well-being. You will be angry that you have to think about these things and to speak them. You will not want a hole in your baby's neck, but after it's there and he plays longer and coughs almost effortlessly, you are somewhat consoled.

Your son will be introduced to a computer at the children's hospital when he is less than two years old, and, if his body is supported just right, he will learn to use a mouse to play games on the screen. You will think, "That's cute, but we'll never be able to do it at home."

In 1990, your son is invited to attend a new preschool program at Courage Center, called "Tech Tots." A small group of four-year-olds will have an array of electronic games and devices that help them talk to each other and learn skills. The kids will figure it out faster than you do. This will become an ongoing theme in your life.

School therapists will instruct your son to only use an electronic device to communicate, even though he has learned how to fingerspell with sign language. He will get a new device almost every year because technology changes. The therapists will discourage sign language, which your son enjoys using. They advise classroom teachers not to encourage fingerspelling, because communication devices represent a universal language. In second grade, the teacher will go her own way and allow all of the kids to fingerspell. This is your son's favorite year in grade school.

There will be weeks in school, year after year, when the communication device breaks down and is sent away for repair, but the repair won't start until Medical Assistance approves payment, which always takes at least a month. During these weeks your son is unable to talk in class or to his friends at school. He types words on a device without the capacity for speech and his teacher looks at his words after class.

At first you won't know how funny your kid is, because he's been told only to push icons on buttons for things like "bathroom," "I'm hungry," or "I'm having trouble breathing." But you will catch on when he's seven or eight, when he decides to use the electronic device creatively, discovering he can hold his finger down on a button for auto-repeat and create new sounds. He will annoy you by interrupting your thoughts to hold down the "2" key while making dance moves, his machine voicing nonsensical phrases that become raps: "2da2da2da2da2. 2da2. 2da2da2.

Your school-aged son will embarrass you in front of others as children do, except your mouth will be doing the talking while he spells because you're interpreting fingerspelling for him. He will say he wants to sing a song to his physicians at a clinic appointment. He will introduce himself as Helen Keller when an adult, meeting him for the first time, is visibly frightened by his appearance. As his interpreter you will remind people to look at him when he's talking to them, but they keep looking at you, especially when you're relaying his fart jokes.

You will purchase a desktop computer and printer for the whole family when your son is in middle school and set it up in his room. Your kids will do homework and play games on the computer, and you will learn how to email legislators and the governor's office about proposed legislation affecting people with disabilities.

Your son will make phone calls using a relay service on a keypad plugged into the phone jack. He will call the relay service, and they will call his friends or relatives and voice what your son types to the person he's calling. Even though it takes twice as long for each call, you will be amazed that technology exists for your son to use the phone.

In high school your son will continue to fingerspell at home for most of his communication, but will use the electronic device for entertainment, programming in the phrase "Bloody hell!" in a distinctly British accent, and loudly insert it in response to random statements made at the dinner table.

By the time your son is in college, he will use a computer for most of his work, even talking. An iPad attached to your son's wheelchair has a voice program on it. He types in sentences, the iPad speaks them. You get smart phones, and for the first time in his life, your son can communicate with you anytime, anywhere, by texting and emailing. He will conclude that this convenience allows him safely to live independently and he moves into his own apartment; something you did not see coming.

making music

When your baby is on your lap in the green swivel rocker and you are moving his joints one by one, you will play music and sometimes sing along as you move his arms and legs, fingers and toes. Your husband will do this too. Sometimes your husband sings gently and plays his guitar while you do the range of motion exercises.

One evening your husband will put on the new Keith Jarrett album, Dark Intervals. You will lay your eighteen-month-old son on the floor to listen with you. For the first time in his life, he rolls over and over until he reaches the center of the room. The piano notes tumble out of speakers on opposite ends of the living room, cascading and falling around your son, who stays there attentive, precisely centered between the two speakers, until the music ends.

When your son is toddler-aged, lying on his back in his crib because he's not yet able to lift his arms while sitting, he will imitate your signs as you sing Jesus Loves Me. You will notice that he signs in perfect sync with the beat of the song.

Your preschooler will be referred to music therapy at the university. The therapists will find ways for your son to make sounds on percussion instruments. They find ways for each of his hands to make music, difficult because the fingers on his left are stronger than those on the right, and neither hand can turn palm-side down unless they're supported. The therapists discover that at four years old your son can naturally direct music. A month later your son is invited to direct the university's brass band and the students make a videotape of him, his small hand reliably marking the rhythms and urgencies of the score with a baton. You will watch this unfold and be mesmerized by your son's talent. You will feel awe that people in so many places keep clearing the way so your son can express himself.

Your son will play percussion in his high school band. He will carry a shaker egg in the side pocket of his wheelchair. He will accompany the music at the monastery where you attend mass. He will get a percussion set-up for his chair and play with The Brass Messengers in the annual May Day parade, where they stop in the middle of the intersection of Bloomington and Lake and lie on their backs to play You are My Sunshine. When he tells you the plan for this, you think about the germs a person with a trach might encounter in that situation, but you will not bring this up. You remember that we all choose benefits over risks every day, and your son deserves that right too.

Your son will develop a strong interest in radio. A well-known local radio host will mentor him and invite him to dress rehearsals and live shows. Your son will be given an internship at a community radio station. He learns how to use the sound board and how to relay a syndicated news show from the West Coast. He learns to play the promo spots, and the station staff become generous mentors. Your son's job coach will help program his iPad to run the sound board at the station.

Your son will gravitate toward musical radio shows and podcasts totally foreign to you. He will participate in others' podcasts and music projects. He teaches you about the history of American popular music. He develops his own podcasts around various themes.

A popular local performer with a cover band draws big crowds. He will incorporate your son's percussion into his shows. The set-up on his power chair allows your son to perform solos. He will love being in the spotlight, year after year.

You and your husband will go to an outdoor amphitheater to see a performance on a summer night. The crowd will be packed in, standing, and the closest you can get is thirty or forty feet from the stage. The spotlight will shift to your son in his chair, who plays his cowbell, cymbals, and top hat. He shines during his solos. His drumsticks strike metal over and over with dead certainty, sending reverberations right into the middle of your chest. You hear songs you've always known, but that night it will feel like they are being played directly to you. You will glance to the far edge of the crowd, where it is quieter, and see your daughter and her husband dancing and holding up their nine-month-old daughter, your first grandchild, to listen to the music. The baby's eyes are wide as she points a chubby finger at her uncle, playing up front.

The last song of the night will be Folsom Prison Blues, by Johnny Cash. Your son has told you it's his favorite to perform with this group. The band explodes with sound and the singer's deep voice lays down words about being trapped in an impossible situation while watching others glide by in comfort. The pain will come across, but there are also strong overtones of melody and solid triumph: the gospel of the blues. After the last line, "And I'd let that lonesome whistle blow my blues away," your son has the spotlight to himself. He looks exuberant as he puts all he has into sending the song home.