It’s reassuring to believe that everything in the universe is connected and therefore everything happens for a reason. But when destiny deals you an uphill battle, it’s not easy to wrap your head around what its intent could be.
Davis Wood was born during a storm. Though his parents didn’t know it, he would eventually become the 34th person in the world to be diagnosed with Phelan-McDermid Syndrome (PMS), a rare genetic disorder involving partial deletions of Chromosome 22.
Symptoms of PMS do not present themselves right away. Most infants with PMS exhibit normal growth both before and right after birth. The first physical sign associated with PMS is neonatal hypotonia, or low muscle tone. This is often accompanied by feeding difficulties, a weak cry and poor head control.
As a child with PMS grows, symptoms can range greatly, depending on how much of the chromosome has been deleted; some patients with larger deletions become completely bedridden and non-verbal, while others with smaller deletions are fully mobile and can form speech. Common characteristics of the disorder are behavioral abnormalities including traits associated with Autism Spectrum Disorder (ASD), decreased perception of pain, motor delays, sleep disorders, and gastrointestinal, renal and cardiac problems.
Davis cannot form full speech, although he gives indications that he can understand it. He communicates using different kinds of emotional sounds and grunts. He can walk, although sometimes he stumbles. He prefers routines and having a predictable, safe environment. He connects with his outer world mostly through his eyes; when something grabs his attention, he locks his eyes onto it and studies it intently and exhaustively. When he was little, he loved to play with toy cars and trucks by flipping them over and spinning their wheels. He loves watching cartoons, especially Spongebob and Jimmy Neutron, and has memorized every episode; however, he only prefers the episodes where there are no indications of violence. It’s not that he fears the violence, but he just does not prefer it.
Aside from profound developmental impairments, the most debilitating symptom of Davis’s disorder is recurring seizures – ranging from mild to severe – which cause him to lose a bit more of his overall functional capacity each time he endures one. For example, he used to be able to communicate using basic sign language, but that was lost after his first major seizure.
“One thing about his condition is that any ability he has, has to be maintained. Because he loses it if it isn’t,” said his mother Cheryl Wood, who has recently published “The Tao of Davis”, a book detailing her experience of raising a child with a disability in the small mountain town of Mammoth Lakes.
“Davis is very aware of the gentle souls in a room. Even if he is looking down, he is very aware of what’s happening around him and the energy of people around him. Everyone who comes in contact with him falls in love with him. And for those who can’t, we find that there’s usually some quirk about them outside of our son, and he sees it. Whether they have some degree of angst, insecurity, fear, or whatever it is, in their brain. And it’s interesting because they’re not in our circle. It’s sort of this natural gatekeeper, and it’s not because we’re judging them but because there really is something that just doesn’t feel as comfortable with them,” said Wood.
The book is a compilation of Wood’s personal journal entries throughout her time raising Davis, who is now 26. Starting before Davis was even born, she takes the reader along her experience through each stage of his development while detailing stories of profundity – including those of the humor, joy, and wisdom that come with having an atypical child, as well as the pain and anguish of watching them struggle. Each chapter begins with an enlightening quote about coming to terms with the things in the universe that we cannot control.
As someone who has practiced yoga her whole life, Wood infused tenets of yoga into her approach of caring for Davis: the idea of being flexible enough to bend with the wind, while strong enough to hold a pose.
“I was fortunate enough to have studied from one of the iconic yoga figures from the 1920s, whose favorite thing to say was ‘no pain, no gain’. And the whole thing is that, as you’re going in for a pose and you’re in that pose, another layer gives if you stay with it. You then become stronger and more flexible. Strength is the key that a lot of people miss in yoga; you can be as flexible as you want, but if you don’t have the proper strength then you won’t be able to hold the pose,” said Wood.
She continued: “And that’s how I like to go about living in this world; it’s that pose, that pause, that presence, of staying with myself and not getting caught up in whatever is going on. There’s a stillness in the process of caretaking, and you can either approach that with a sense of boredom or a sense of opportunity to have another layer give. Yoga gave me the tools to be able to trust the process and keep moving forward with Davis. Every hard moment is just a moment, and a little farther down the line things will get better; you just truly have to believe that.”
But it wasn’t necessarily easy for Wood to come to terms with her son’s disability, especially in the early stages of its manifestation.
“When Davis first arrived in the world and we slowly started noticing developmental delays, I was the last person to come to the table and admit that there was something wrong. I really wanted him to catch up, and I was in denial that he wouldn’t be able to,” said Wood.
As a Mammoth resident, one could imagine that raising a child with a disability would be especially difficult to do in a small mountain town, where there are limited resources and limited neighbors. But Wood says it was actually a blessing for Davis to grow up in such a tight-knit, supportive community.
“He knows more people in this community than I do. Everybody seems to know him, even if they don’t know my husband and I. When we go anywhere, he has a sound that he makes. And we’d be in Vons and he would make his sounds and then across the aisle somebody would go, ‘Davis is that you?!’ Which I just think is amazing,” said Wood.
The medical staff in Mammoth has also shown remarkable support. “Being in a small town, the medical staff here truly cared and would show it in extraordinary ways. Dr. Johnson, who was Davis’s first pediatric doctor, knew how fragile Davis was and he would literally come to my house during storms because he didn’t want to have to bring Davis out. I still have this image of him with his black bag walking down our steps,” said Wood.
She went on: “Everybody rallied. And I think they still do that. In such a small community, whenever something is going on, people are right there with their hands to say ‘here, do you need to come this way? How can I help you?’” said Wood.
Over the course of his 26 years, everybody at the Mammoth Emergency Room has grown to know and care for Davis. Wood would drive Davis to Los Angeles every 3 to 6 months for more comprehensive medical appointments, but the level of personalized care was not the same.
Davis is now 26 and lives in his own one bedroom apartment in Mammoth, where he is accompanied by a team of round-the-clock caregivers. He is very active, and spends much of his time outside enjoying nature.
Through her time with Davis, Cheryl Wood has found a community among other parents of children with PMS. She has become an advocate for PMS resources, research, and support groups, where they can share their tears, tired smiles and hope for the future.
She writes in her book that Davis “reminds all of those around him that we can all be uncarved by life, unaffected by jealousy, anger, fear, or desire. Perhaps he [is] more whole than the rest of us.”
Hanging in Davis’s bedroom of his apartment is a painting of a baby elephant and its mother, standing in water together, that Cheryl painted years ago. “Elephants do this beautiful thing,” she explained, “where the entire herd will wait to cross a body of water until the weakest of them, usually the youngest baby, is able to cross too. They either all go, or they all stay with the baby and wait until it can too.”
Copies of “Tao of Davis” are available on Amazon and will also be available in hardback and paperback at Booky Joint and Spellbinder next month.