(Disclaimer: As per usual, identifying information has been changed or omitted.)
I’m lucky enough that my school recognizes the importance of learning from patients and their families, and as such, organizes a home visit for each student with the family of a child with some type of developmental disability. At my orientation for pediatrics, I was handed a slip of paper that detailed William’s disability: he was a teenager with incredible mental disability and minimal language and toilet training skills, but no working diagnosis.
With my almost nonexistent experience working with disabilities, I was perhaps more than just slightly nervous for the encounter, which took place one evening after my clinical responsibilities. I spent the ride to the house contemplating what questions should be asked and how to ask such sensitive questions in a respectful manner. I wondered how difficult it’d be to interact with William and his family.
But Mr. and Mrs. B and William were waiting for us with open arms and dinner on the table. William, a small, thin boy for his age, smiled shyly at us, giggling and offering a hand for a high five when prompted.
After negotiating that William could have a soda with dinner as a reward for successful toileting earlier that day, we sat down to dinner, and the floodgates opened. Interrupted only by William’s prompting for certain stories to be told, Mr. and Mrs. B began pouring their hearts out, recounting countless experiences with doctors and the community and their son, providing more lessons to me than they could ever know.
I was reminded, once again, the importance of just listening: Mrs. B couldn’t thank us enough for letting her “gripe” about her daily stresses in dealing with a child that is trapped at the level of a toddler, the kind she feels guilty constantly burdening friends and family with.
I was reminded that often parents know best, especially with children who aren’t quite “normal.” They recounted a particularly scary period when William was nauseous and acting very tired, laying down on the floor at every opportunity. Despite the parents’ insistence that something was wrong with the shunt in his brain, the physicians sent them away since William wasn’t demonstrating typical signs of a headache, the most common symptom of such an issue. “But he wouldn’t know to hold his head when it hurt,” Mr. B explained, and it would later be found that he was leaking fluid from his brain.
I was reminded how scary it can be to not know a diagnosis, and how important it is to be honest with the parents, even when the news is not ideal. Time can be so hard to come by in medicine, but with tough diagnoses (or lack thereof), it’s SO important to take the time to answer the family’s questions and help them anticipate what is to come.
I was reminded of the fundamental goodness and acceptance of our society. I was concerned we’d hear heartwrenching stories of classmates who bullied William because they never made it past the drooling and lack of communication, but instead, Mr. and Mrs. B relayed countless stories of high school classmates of William’s who take him to baseball games, or of the community members who love to observe William’s enthusiasm at sporting events. William has even had the opportunity to meet some local celebrities, and beamed as he showed me his picture with our hometeam NFL quarterback.
I was reminded that physicians are often the first link to resources for care outside of the office, and that they should remain aware of the various tricks to save money or improve quality of life for these patients. Mrs. B was grateful for those who had taken the time to help connect her to other services to benefit William and the family.
But above all else, I was in awe of the strength of the family. Despite rarely having time to themselves, Mr and Mrs B show no signs of resentment toward their son or their lifestyle, instead embracing and tackling the challenges that come with caring for a disabled son day to day. The love and support within the family was palpable, even among William’s siblings, who acknowledge lovingly he’s just as annoying as anyone else’s brother.
So William and family: this one’s for you. Thank you so much for welcoming me into your home, providing me a home-cooked meal, and allowing me to see into your life in a way that will forever change how I approach my patients, but thank you mostly for allowing me the chance to get to know a happy-go-lucky, smiling, welcoming young man with a fervent love for M&Ms and sports.
Side note: Yes, I’m alive. I managed to survive pediatrics, just barely, and I just started my family medicine rotation, but we’ll talk about that more later.