Little House on the Plains

My brother Jesse shouldn’t be alive. 

His birth mother was a child herself when he was born 4 weeks early, already addicted to the narcotics she had used all throughout her pregnancy. In the end, Jesse would set a record among infants to be born with his level of drug toxicity and to live, although that seemed unlikely at first. At first, Jesse’s condition was so critical that he was immediately taken into state custody and rushed to a specialty children’s hospital to stabilize him. From there he had to be taken to a non-profit medical facility that existed solely to keep infants like Jesse alive while they detoxed from their birth.

That’s where he met our mother. 

Our mother was a case worker at the non-profit, tasked with finding placements for the babies who were ready to leave the facility. Sometimes that meant returning to extended birth families, sometimes into foster care or adoption. But none of those were options for Jesse, who was deemed ‘failure to thrive’ after a few weeks of being sustained by the non-profit doctors. No matter what they tried, he wasn’t able to put on weight (he was born at 5 pounds and kept dropping ounces) or to breathe without the help of machines. They determined he had suffered a stroke in utero, and they doubted he would ever be well enough to go to a regular family. They had no place to send him and they could not afford to keep him going indefinitely. At some point, a decision would have to be made. 

But by then our mother had fallen in love with him, so she raised her hand and brought him home. 

When Jesse came into our lives, it was with a fleet of machines that blinked and whirred non-stop. At 8 weeks old he was so tiny his infant diapers came up to his armpits. He slept on a changing table at the foot of my parents’ bed, and no one was worried that he would fall off, because he didn’t move. 

“Don’t get attached to him,” the doctors advised. “He probably won’t live the rest of rest of the year.”

It took months for Jesse to be able to breathe without the machines and more before he could move on his own thanks to the physical therapy he started at 4 months old. When he did start to crawl, his left side was still barely responsive, so his right side worked extra hard to scoot him across the floor on a diagonal - his little diapered bottom bouncing wildly with each stroke. We called it his commando crawl. He showed signs of speech delay, so we started to teach him sign language. On doctor’s visits, they’d watch him clinging to a pant leg to stand with one hand and rubbing his tummy with the other to say he was hungry, and they’d warn, “Don’t name him, he probably won’t live the rest of the year.”

He was 2 years old and running at full steam before they admitted that he may make it. 

That was also about the time that he started demonstrating a hyperactive metabolism, a hyperactive physical ability, a hyperactive mind. He had put on weight now and had a voracious appetite, and his energy was like that of a speeding train propelled by its own momentum; he never stopped. He didn’t stop when it was nap time or bed time or the middle of the night. He didn’t stop when he fell down or ran into things or at the sound of things crashing around him. He didn’t stop even when not stopping left him with cuts and bruises. He never stopped. Just as the concerns about his physical survival started to fade, we were beginning to learn the true and invisible cost of the conditions of his birth. 

By the age of 5 he had been diagnosed with a severe level of ADHD, the likes of which doctors marveled at and studied. Later, we would learn that an underlying case of bipolar disorder exacerbated his hyperactivity to a life threatening degree. Whether from the uncontrollable chemical summersaults his body and brain endure at sporadic and unpredictable intervals, or the dramatic thoughts and actions that result, it became evident at an early age that, as the world moved around him, Jesse would always live under threat on the front line of an invisible war in which he was both the aggressor and the defender. 

A lifetime parade of doctors and therapy and medication trialing, balancing, failing, and restarting began. With Jesse’s kind of disorder, the best he can hope for is that the right cocktail of medications can keep him in balance most of the time, and provide enough self-awareness that he is able to isolate himself before those moments when the balance tips and he loses all impulse control and sense of self for minutes or hours at a a time. It is a terrifying and demoralizing skill that he has been working his entire life to master. 

When Jesse was 8 years old, our family moved out to a small farming town in southern Kansas with one stop sign and no stoplights, where the grocery store is also the pizza parlor and the gas station is the town hub. Our mother would spend the next decade commuting an hour to and from her work where she helped other children in need so Jesse could have endless miles to run and a community small enough to take the time to know and support him.

And it worked. 

Despite significant learning disabilities, he graduated high school. Despite the many social challenges he will always face, he developed life-long friendships. And despite the complexities his ADHD and bipolar disorder added to the adventure of being a teenage boy, he made it to adulthood without getting into (too much) trouble.

My brother is in his 30s now and lives with his loving partner and their three children.

His disorders make holding a steady job impossible, so he is the homemaker and the handyman and the homework helper (this semester all three kids have straight As!). They have been searching for years to find a place where they can afford to do more than just survive on one income and, with the help of connections Jesse made in his youth, they’ve been able to secure an old farmhouse fixer upper in the same Kansas town where he grew up. They’re currently renting a few towns over and have been working hard to make the old house ready for their little family. Their neighbors know they’re coming, and Jesse’s partner has a job waiting for her at the local school. 

While they can address most of the structural needs on their own, they need help updating the plumbing, electricity, and heating in this 1920s farmhouse so their kiddos can have a safe home and the kind of small town childhood that helped the boy who wasn’t supposed to live the year grow up to have a family of his own. 

Every little bit helps, and larger donations come with a bonus story about the harrowing & heartwarming adventures of raising a Jesse in small town America.