The Day My Son’s Endo Kicked Me Out
The air hung heavy between us that cold January morning as we made our way along the familiar roads that would take us to my son’s endocrinology appointment. We have travelled them often enough over these past 16 years to know the roads by heart and to sense the shared tension that sometimes accompanies us on these trips.
For 16 years our destination had been the world-renowned Children’s Hospital of Philadelphia, where the décor is intentionally bright and cheery—to soothe anxious children and their parents, and the conversations are directed not at the patient, but at the parent. Visits to CHOP are more of a parent’s check-up to determine how well we performed at keeping our child’s A1c within an acceptable range.
But we were no longer going to CHOP. I had recently transitioned him to an adult endocrinologist at Penn, literally just across the street from CHOP. This was only our second visit with this new doctor, and we were all still getting to know one another.
“Be friendly,” I offered.
“Be warm and engaging,” I encouraged, perhaps a bit too enthusiastically.
“You want the doctor to like you and become your advocate and coach.”
My attempt at peer-to-peer advice came off as so much mother nagging, and within moments we were stuck in a steely silence caused by hurt feelings and full-blown diabetes fatigue.*
The tension between us had settled in deep by the time the doctor entered the exam room; the air was thick with it. Thankfully the doctor noticed it right away and tried to engage us with small talk. That my son is a man of few words is an understatement. Today he was a man of no words, and the silence in the room became deafening.
I was not about to answer the doctor’s questions in what I felt was my son’s appointment, yet my son clearly had no interest in talking to me, or the doctor. How would we learn to re-envision these visits as his visits when I continued to be present—a giant mama presence—just like I had been for 16 years across the street?
But what if I weren’t here, I wondered.
What might develop between them if I would quietly slip out and leave it to them to carry on?
Not sure if I was doing the right thing or making a huge mistake, I suddenly rose to my feet, and announced that I thought it best for the two of them to handle things from here. Pretending to be as calm and confident as I could, I turned away, encircled my fingers around the doorknob, opened the door and slipped out.
Exiting the exam room, I found the nearest ladies room, had myself a good cry, and began to pray that my son and his new doctor would be able to develop a healthy relationship, or at least a mutual understanding. I didn’t know what future visits would look like, but I knew the earth had just shifted underneath my feet.
Having regained my composure, I dropped into one of the chairs in the hallway outside my son’s room. As time ticked away, I began to relax, knowing that they had found things to talk about, and thankful that I had trusted my instinct to make myself scarce. As I relaxed, I started looking around. I noticed the nurses and how kind and friendly they were to their patients and to one another. They will take good care of my son, I thought.
And in the time that I sat there alone, I noticed not one but two young adults, just about my son’s age, accompanied by no one else but the nurse; there were no other parents sitting in the chairs with me, waiting for their adult child. I marveled that these young people were navigating the entire visit by themselves.
When my son and his new doctor finally emerged from the exam room, it was clear that my son’s spirits had lifted and that he was more at ease with the doctor. Sending my son out to the waiting room to schedule his next appointment, the doctor motioned to me to come into the exam room for a private talk.
We spoke for several minutes as he very graciously shared with me how confident he was that my son would do just fine. Pleased with my decision to have left the two of them alone, I casually mentioned to him that next time, I would be sure to sit right where I had at that visit, in the hallway and not in the room, unless they needed me. Looking me straight in the eyes, with the kindest of smiles and the confidence of one who knows from experience, he gestured to the waiting room, saying, “No, next time, you’ll be sitting out there.”*
For 16 years I had accompanied my son on every medical appointment related to his diabetes. Four times a year to the endocrinologist. Annual visits to the retinal specialist. Annual trips to the lab for blood work. And the list goes on when we consider all the other medical appointments throughout his young life. I had already transitioned him from his pediatrician to an adult physician for all of his general medical concerns, but the diabetes appointments? Aren’t those too complex for him to handle by himself?
How did we even get here so suddenly? It was just a little tension and mother-son annoyance, yet without warning, another era in my life as a mother has come to an end. It’s funny, when they’re young we lament their loss of independence as we accompany them on every school field trip and friends’ birthday parties; and yet when the time comes for them to fly solo, we frantically try to pull them back, because we’re not ready!
Here are a few of my observations on transitioning from my role as caregiver to consultant:
- If I’m honest, the tension between us had been brewing since he went to college. Just because your child acts disinterested in managing his care doesn’t mean he isn’t ready to fly solo. He won’t get it perfect, but neither did I!
- Transitioning to an adult endocrinologist usually occurs when the child graduates from high school or college. Try to select a doctor with whom you think your child will be compatible; in my son’s case, it was time for a male doctor.
- Mentally prepare yourself for the inevitable when you transition to an adult endocrinologist. If your child won’t “own” the appointment, you need to stop going.
- Just because your role is no longer that of caregiver, you want to be rehired as her consultant. This might not happen overnight, so go easy. Resist the urge to nag; choose instead to encourage, encourage, encourage!
I couldn’t be happier with my son’s new doctor. It was clear this was not the first young adult he had transitioned to adult care. It was also clear that he would be my son’s advocate, and if my son would let him, he would also be his coach.
Read more from Bonnie O’Neil: What Saved My Son’s Life.