BY KARA AYIK

When Evren and I first heard someone ask us, “Who’s your quarterback?”, it took milliseconds for it to click: the interviewer wanted to know who coordinated Evren’s complex care team. Today, I realize that who’s your quarterback is jargon known to many who live with medically complex diagnoses and their parents or caregivers, who may be asked the question again and again. But for me and Evren, it’s always been an awkward question. Was it legit for him to answer with, Mom’s the quarterback?

Somewhere on the timeline from childhood to the late teens or early twenties, a monumental transition occurs for a family living with medical complexity when it’s time for the entire pediatric team to be subbed out for adult care providers. Leaving pediatric providers who earned our trust and cared for our sick children is an emotionally fraught process, and many parents begin feeling anxiety years prior. The transition is even more challenging in situations like ours in which the parent or caregiver is the quarterback. Once our children reach 18, QB moms like me are then expected to turn the ball over to our medically complex “adult” child. 

When Evren reached age 18, we were all overjoyed. Despite serious and progressive impacts of his genetic disease, Acid Sphingomyelinase, or ASMD, he had survived to adulthood and would be starting college an hour from home. Fortunately, though, we had a grace period before his pediatric providers would push us out of the nest. Because of his complex diagnosis, his pediatrician was willing to keep him on longer, and the children’s hospital, where most of our care team was, would continue seeing him until age 23. 

But the time for the transition of care came sooner rather than later, before age 23. It turned out that certain specialties like endocrinology and pulmonology draw the line at 18 years because the demand for that specialty care outweighs the supply. But more than that, I wanted Evren to go to school. He needed to spend his days in classes and with his friends, not with me sitting in a car for hours traveling to and from medical appointments. So the decision was made to line up an entirely new team of adult care providers near his college. With a change of medical provider groups through an HMO, every single one of his physicians had to go all at once.

For the most part, Evren was still a typical young man. He wanted to do and think about the things most young men like. So although I gave my best shot at passing the ball to him, Evren was not really interested in taking over the QB position. He resisted my coaching on how to ask for referrals and had zero inclination to leave his social media apps and summon the patience needed to comb through a provider database which was not only tricky to navigate, but also filled with outdated listings.   

Though I tried to fire him up with factoids I’d read in website bios about the new physicians, Evren wasn’t the least bit curious. I wasn’t surprised that he seemed completely unmotivated to take over as quarterback. He didn’t want to participate in the transition of care because he wished he didn’t need the care in the first place. He wanted life to be about fun at college and making memories with friends. No sir. No transition of care workshops for Evren. 

Sigh. 

I would need to be able to continue as QB, at least for a while. My plan was to watch for readiness for each new phase, transitioning him into the QB role at a slower pace. I felt doubly responsible to do whatever I could to help Evren because his disease progression had left him chronically exhausted. At least I could carry this weight for him. 

Though I asked each one of his physicians, including his pediatrician, not one made a single helpful recommendation. I had to transition his care team by myself. The process took hours across several months and required endless phone calls, which usually meant sitting on hold with annoying music playing in the background. If my mind wandered, I had to listen yet again  to the phone menu options, “which may have changed,”  in order to be connected to the right line.

Sometimes I’d be disconnected, and sometimes a computer-generated voice ordered me to leave a message for the staff “who were all busy answering other callers.” I strategized by calling offices in the mornings during summer vacation while Evren was physically present but still sleeping in. Because Evren wasn’t a patient yet, there was no privacy waiver on file, and the office wouldn’t allow me to make an appointment for him. I’d dial the office, and when the receptionist inquired about his age, that was my cue to barge into Evren’s room, wake him out of a sound sleep, shove the phone at him, (he knew the drill), and then he would mumble with his eyes closed, “My mother has my permission to talk to you.” 

One day, during a search for the new lineup, my mind started to slip into a daydream. Hmm. I wonder what it would be like to have one of these quarterbacks—someone who would guide us down the field and show us who to pass the ball to. What would it be like to have someone help me? Having a personal quarterback would have removed the burden of anxiety I felt about possibly making serious mistakes along the way, somehow leaving a bad impression,  or failing to find that magic provider who would have been perfect for Evren’s care.  

Right then I said to myself, I’m just going to do it. I had seen somewhere on the children’s hospital website that they had a transition of care office, and I would see if they could help me. When I called, and the conversation went something like this:

Me: Hello, I was wondering if you might be able to offer some help with the process of transitioning my son’s care. My son is aging out.

Receptionist: What is it you’re looking for help with?

Me: Well, I tried asking his hematologist and pulmonologist for a recommendation for an adult provider, and they basically said they don’t know anyone. 

Receptionist: Uh, excuse me. I have a call coming in. I need to put you on hold. Click.

Me: Okay, drumming my fingers, feeling less optimistic with each passing minute.

Receptionist: Three minutes later. Okay, I’m back. What is it you wanted again?

Me: Uh, basically I wanted some help trying to find new providers for my son. After talking to the pulmonologist, I get the impression that it’s going to be YOYO.

Receptionist: YOYO?

Me: Yeah, you’re on your own.

Receptionist: Wait a minute. Who told you that? Did they say that? How old is your son? Do we have a confidentiality waiver on file? 

Me: Yes, it’s there somewhere. Yikes. Am I lying? Has that one expired? I’m sure it’s there! I said it with fingers crossed, feeling guilty over my potential falsehood. 

Receptionist: I’m putting you on hold while I look for it. Click. About two minutes later, he comes back on. I still can’t find it. Lots of tapping noises in the background. Oh, wait a minute. I have another call coming in. Click. Puts me on hold for the third time.

Enough! This quarterback dream has ended. I hung up the phone. 

So, for a few hours, I stewed in frustration and self-pity, feeling jealous of people who had their own personal quarterbacks. Then, abruptly I put myself in check. I thought about the mothers around the world who had no money to access care of any kind for their children, or who might be able to access a doctor, but no specialty care of the caliber I expected for Evren. I was acting spoiled. I felt remorseful, and my attitude did a 360.  I practiced expressing gratitude that my son could access the care he needed, and that I had the capacity to help him. 

Eventually, the new care team came together, and I felt optimistic. In time, I saw that a few seemed to take even better care of Evren than his pediatric providers. By the end of the summer, it felt as though we had 100 appointments. “I think I’m all doctored out, Mom,” Evren said with weary resignation. 

Fast forward to early 2025. My son was at his first visit with a new cardiologist; the third in as many years. (The first one—well—I picked a lemon. The second moved away.) Evren and I had agreed I would phone in and listen. Though he now attended many appointments by himself, I still tried to attend important visits, though it wasn’t always possible. As planned, I listened in and expected Evren to speak for himself. I spoke only when necessary. The appointment went well, and I hung up once the next steps had been determined. 

A few minutes later, Evren called me back. “You know what the doctor said? He said, ‘We’re building a good team with your mom as QB.’  I started to laugh inside my head, but I couldn’t help myself. I couldn’t stop laughing. He must have thought I was crazy!”

I still smile at that. 

We’re optimistic that Evren will be strong enough to take a regular job, and I’m confident that when it’s time, he can be his own quarterback.