The yellow brush
The last time my little brother ran from me, I was 14, he was 14 months old, and he had my yellow hairbrush.
It was a Monday in June, and Mom was braiding my hair for a softball game. Adam loved nothing more than getting me worked up, so he grabbed the brush and took off with it, squealing, while I yelled after him.
That was Adam all over.
There are five of us: Rickey, Grace, me, Lea and Adam. Dad had really wanted one more boy, and Mom calls Rickey and Adam her bookends. We’re from Jean Lafitte, Louisiana, but home is Blair County, Pennsylvania, and that’s where Adam grew into a baby who woke up happy. Mom says he met her every morning with “the biggest, cooing grin, bouncing up and down, holding the crib rail for support, trying to stick his fat thighs through the slants.” He loved cake, and he’d sign more, more with his little hands while he waited for his piece. Bath time was his favorite part of the day, and every night after dinner he and Dad had a routine:
I would tickle his belly with my beard while he literally shrieked with laughter. As soon as I would stop he would uncover his belly and wait until I did it again. We would then take a bubble bath with Lea and snuggle with Mom for the night. That routine will be my heaven with him.
Dad, in 2017
That spring, Dad and Lea grew a garden from seed. Lea was 4, and she picked out her favorite fruit and veggie packets herself. Every day the two of them watered the little pots while Adam watched from his walker, and by June the plants were ready to go into the ground.
That Monday was June 5, 2017, and our house was as full as it gets. Rickey had just graduated from high school, family had flown in to celebrate, and Grace and I were in our uniforms for the first game of the season. After the business with my brush, Adam went to play with Lea in a tent in the living room, carrying his toys inside, and Dad, Grace and I left for the field. Dad coached our team, so the three of us always went early to warm up.
He was right there. And then, quietly, he wasn’t.
He had slipped out the kitchen door and gone straight for the pool. Three days earlier, we had all cheered him on as he jumped into the pool and into our arms. This time no one was there to catch him. He had been gone about three minutes when Mom found him in the water.
We weren’t even two minutes from the house when Dad’s phone rang. He pulled a definitely illegal U-turn in the middle of the road, and I looked at Grace wide-eyed and laughed, thinking, what is going on? Dad raced back while the two of us sat in the back seat, confused and starting to get worried. He threw the car in park and ran for the backyard, and we followed him. That’s when we saw Mom at the edge of the pool, giving Adam CPR, and our grandparents trying to push us back from the door so we wouldn’t see. People were already calling 911, and we could hear the sirens coming. Our driveway winds, so Grace and I ran to the front yard to show the ambulances the way around to the back, so they could get to Adam as fast as possible.
Everyone who could took a turn after Mom: our family, the first responders, the emergency team at the hospital. Ninety minutes without a pulse, and then, right as a priest anointed his head, Adam’s heart started beating again. That night he was life-flighted to UPMC Children’s Hospital of Pittsburgh, and Mom and Dad went with him.
She read to him anyway
Mom stayed with him, first in Pittsburgh, and for the next four months our family lived in two places. One week in, a neurologist told her that Adam would never hear her again. She read to him anyway. For 33 days she wasn’t allowed to hold him, so she stood beside his crib, “singing, reading, praying and squeezing his hand but nothing more.” Then one day, while she was reading, he cried.
Most days, though, nothing seemed to reach him. One day I walked in while Mom and his therapist were working with him and getting nowhere. I was 14, and I didn’t understand that he wasn’t responding the way Mom was hoping he would. The therapist, out of ideas, asked if I would talk to him the way I normally did at home. I leaned over the crib, thought for a second, and snapped, “Adam. Get out of my room!” His eyes shot open. I laughed. Mom was shocked, and then she was crying.
Back home, the garden didn’t make it. By July the plants, still crammed in their pots, had died, and for a long time Dad couldn’t stand to look at them.
Grace and I started a new school year without Mom there. Every day, friends and strangers asked how our brother was doing, and when we said “good,” they heard “totally healed.” We had to explain that a good day just meant he was still alive.
That September, our hometown packed a pavilion with people in blue Adam’s Hope shirts, and two weeks later our Pennsylvania neighbors held a benefit of their own.
That same month, a special scan showed that the part of Adam’s brain that was hurt when it went without oxygen was shaped like a perfect heart. “Rather than devastation, I was flooded with immense hope,” Mom wrote. That heart is our logo now.
When Adam finally came home, Mom rolled him into the kitchen while we were all making lunch. It had been more than four months since we’d all sat down together. We sang, we cooked, we ate.
Fireflies
On June 5, 2018, we wore blue for Adam. That summer Lea still loved the water, and somebody had to get in with her, so Dad and I did. For weeks we worked on self-rescue: swim, roll onto your back, float, breathe, keep going. It was a struggle. She was 5.
Then one afternoon in July, Mom was out in the garage sorting Adam’s toys into garage sale piles. She bent down for his baseball bat, never used, and a single firefly lit up right in front of her face. She caught it in her hands and brought it out to show Lea. As soon as Mom let it go, Lea ran to the diving board and yelled, “Mom. Brother, watch this!” She cannonballed in and swam 40 feet to the other side, rolling onto her back to float whenever she needed a breath, while Adam watched the whole thing.
That night, Mom looked out across our field and saw thousands of fireflies lighting up Adam’s tree. “As if in Morse code,” she wrote, “the entire village was sending me secret messages of Hope.”
Not long after, we drove down to Louisiana, where our hometown did what Lafitte does: they set a date and threw a fishing rodeo for Adam. It paid for his stem cell treatment at Duke. “Our village shines just as bright as the fireflies’ village,” Mom wrote.
Then October came, the pool was covered for the season, and Adam smiled. It had been 15 months. At first Mom didn’t trust it. Then he did it again, and the next day. “I did not request it,” she wrote. “It was not given on demand. Adam’s smile is on His time.”
Planting seeds
For two more summers, Lea asked for a garden, and for two more summers, Dad couldn’t do it. Then the spring of 2020 came, and COVID kept all of us home. Dad got the old seed trays back out, he and Lea filled them with soil at the table by the back door, and we planted it again. Mom’s words for it that spring: “To plant a garden is to believe in tomorrow.”
That year, Rickey, Grace, Lea and I started Because of ADAM: Allies in the Drowning Awareness Movement, so other families could learn what we learned without having to learn it the way we did.
We didn’t keep up with it, if I’m honest, and in the end the Pennsylvania frost took it. It didn’t matter. That garden brought us together for a happy time when we were all in the trenches and there wasn’t much to be happy about. It saved us.
Dad became a Red Cross CPR instructor, then spent eight weeks in Florida learning to teach ISR self-rescue, the lessons Adam never got to take, and by 2023 he had taught more than 150 children. In the summer, he teaches them in our pool, and the rest of us still swim in it, too.
Mom went back to school at 43 to become a nurse for kids like Adam. In her first months of nursing school, with Dad away in Florida, Adam’s night nurse quit without notice. Three agencies couldn’t staff his 90 hours of approved nursing, so Mom covered his nights herself. Then she threw on her scrubs and walked two icy blocks through downtown Altoona before sunrise to get to clinicals. I spent my senior year working on Because of ADAM and helping coach Lea’s softball team, the 8U Fireflies.
I know how this sounds coming from their daughter, but I’m not going to pretend my parents are regular people. Superhuman is more like it. I don’t know anyone else who could have carried all of that at once. I couldn’t have asked for better parents, and I know how lucky that makes me.
Because of Adam
Adam is 10 now. He can’t walk or talk, but he sees, hears and understands everything. He picks his favorite songs and plays games on an eye-gaze computer that follows his eyes. His teachers come to our house for school, and he spends hours on his favorite swing and on long walks around the neighborhood with his nurse. He loves Mickey Mouse, Pooh Bear, Spider-Man, fast cars and anything Mom sings. For years it was Frozen, Elsa especially. Lately it’s Moana. Mom says she and Adam have “a secret language that does not need words to communicate,” and the rest of us have learned to speak it, too. Trust me, he can say a whole lot with just his eyes and that smile.
I wanted to know everything about taking care of him, so I learned to do what his nurses do, including changing his trach and giving him oxygen in an emergency. And all through high school, my family brought him to my soccer and softball games. They’d pull the truck into the outfield, open it up, set out their chairs and roll his stroller in beside them with all of his equipment, and he’d watch from out there with everyone else, wins and losses.
I’m in school in Louisiana now, so I see Adam when I come home. He has nurses around the clock, and most of the time he’s in his bed or his stroller, so I go in to see him when Mom is on shift. I love my mom with my whole heart, and those nights are my favorite part of coming home. It’s just the three of us in his room, me and Mom and Adam, and we can talk about anything. I can tell her whatever I need to. She can tell me her latest conspiracy theory. We gab into the night, and the whole time Adam is right there, hearing the people he loves just living their lives and talking. We don’t bring him into the conversation much, because he can’t answer. We bring him into the moment. I know how simple that sounds. It’s so special to me, and every time I go home I make sure I get one more night like that with them.
Lea, who was right there in the tent with him that day, used to pray she’d be smart enough to build a time machine, so she could go back to June 5 and take her brother out for ice cream. When she was 7, she and Mom got to talking about time machines again, and Mom figured they’d both go back to that day. Lea had a different answer:
Not me. I love brother just the way he is. He smiles when I sing, and every time he sees me, he is happy. Because of Adam, I know so much about the brain, you learned how to take care of him, and just think of how many babies are going to live because Dad can teach them to float. Everyone loves Adam, and we are all better and smarter people because of him.
Lea, age 7
That’s what our name means. Dad said it best, back in 2017: “Our lives weren’t perfect but our family was.” It still is.
What we wish we’d known
My parents are not careless people. Mom cut Adam’s grapes in half and brushed his teeth after every meal. We had baby gates, cabinet locks, and locks and alarms on the doors. We just didn’t understand how drowning actually happens. Here’s what we learned:
- He wasn’t “missing.” Mom had seen him just minutes before. Drowning doesn’t wait until a child has been gone long enough for anyone to worry.
- It was quiet. No splash, no cry. Little kids often slip under without a sound.
- It wasn’t swim time. Adam had learned the pool was fun, and he went back on his own. Most young children who drown in pools aren’t expected to be at the pool at all (CPSC).
- Alarms have blind spots. Our door alarms went quiet when a door was pulled mostly shut but never latched. Test yours, and make sure every door to the pool closes and latches on its own.
- Locks and alarms weren’t enough. Like a lot of families, we didn’t want a fence blocking our view of the pool, but a four-sided pool fence would have stood between Adam and the water.
- Self-rescue lessons were too far away. The closest ISR lessons were two hours away, so Adam never got the chance to learn to roll onto his back and float.
Every June 5, we wear blue for Adam’s hope, his strength, and every family we can reach. Wear it with us. Then go check your doors.
