Asking the Hard Questions
A few months ago, as Soraya’s vent settings were changing, Yasmeen and Leena asked if they could have a meeting with Soraya’s pulmonologist and palliative care doctor to ask questions about her medical equipment and health.
Getting two sub-specialists together to speak with siblings like this is no small task. I’ve never seen this done in my almost 15 years as a physician, and it took months of coordination before we finally settled on a date: July 29th.
We held a family meeting after Soraya went to bed a few days before the appointment to prepare. To make the most of the time allotted, Safi and I helped the girls create a list of questions they wanted to be sure to ask.
As I typed up their questions (I’d appointed myself meeting secretary), I listened to Yasmeen make the case for wanting to know a timeline of Soraya’s life expectancy with the understanding that no timeline is certain—and honestly, nothing in this life is.
I then listened to Leena stress the importance of not knowing about any sort of timeline as she felt that information would keep her up at night. Yasmeen felt the opposite, saying that not knowing would be what kept her from sleeping.
Both perspectives made complete sense. There is no right way to navigate this. There’s only the way that feels right to them.
Listening to this conversation was hard. The dichotomy of their child bodies grappling with these adult questions was heart-wrenching. How and why did we get to the point where this is how we’re spending a Saturday night?
I try not to sit on these types of thoughts for too long.
Instead, I tried to savor the moment and appreciate that we had each other… deep down, still questioning whether it was the right thing to be so transparent with the kids. Talking about things is really painful!
When the time came for the appointment, Safi and I couldn’t help but notice the contrasting ways the girls process. While Yasmeen asked about Soraya’s prognosis and timeline, Leena distracted herself with fun dance trends in the hallway. However different, both did awesome and got what they needed in the end. Safi took them out for ice cream afterward to decompress.
This whole experience has made me reflect on the importance of providing a space for siblings to ask questions and feel truly seen/heard. Though Safi and I had answered many of the questions the girls asked before this meeting, there was something more impactful about hearing the information directly from Soraya’s doctors. I think there are times when the girls wonder if we’re holding back details to shield them from pain, and even though we reassure them that isn’t the case, getting information firsthand validates that we truly are in this together.
I want to reiterate that having these types of appointments isn’t customary—but just because something isn’t customary doesn’t mean it isn’t possible.
This is a nice reminder for all of us to ask for what you need to get the care you desire. You never know if it can be done unless you ask. You just need the right provider with an open mind and open heart.
Grateful for our medical team today and always.