We are still in a holding pattern. Making it to appointments, meeting new specialist, but something is different. Unlike the normality of what we have been through, there is a stark contrast, this time.
Early on we developed a narrative, an elevator pitch, about what our daughter has going on. There was a need. We could see it through the subtle wrenching of the face, the slight tilt of the head, every time we mentioned the word “Craniosynostosis” to anyone, even many doctors. So, we worked on one. Hell, we even workshopped it, my wife and I, with each other. There is something about dissecting and plain-speaking your daughter condition while she is asleep in the bassinet right next to your bed. Something sobering.
As time progressed, and we tirelessly learned more, we updated this narrative. We consumed the avalanche of information that we were provided, and transformed it into a description, adding an addendum to the elevator pitch. Regardless of the degree of understanding (medically or personally) we have been able to rattle this off, in unison, thousands of times.
But, now, things are different. This most recent batch of unknowns has rendered us in a mire of questions. Finding ourselves in the familiar sea that we were thrown into the moment that our daughter arrived. Seeking a life raft, rock, even a piece of driftwood to help us find some stability. But, this is familiar territory for us. However.
With all of the new doctors and specialists, they understand. They are not asking for the narrative. They are talking about how the narrative affects THEIR understanding of what may be happening. They are speaking to us FROM where we are. This has allowed us, for once, the chance to focus on what is new. It is not going unnoticed.
Though we still do not have any answers, enough information to provide (yet), or a date for her next surgery, this small change is making things easier. As a bit of a pragmatist, I am certain that it will not stay this way. That we will, again, return to the days of have to explain to healthcare professionals what craniosynostosis is, what it means to our family, and (most importantly) what it means for us. Speaks volumes to the state of things, I think. But, for now, we will take this dynamic shift as a sign that when we have some answers, they will be more clear.