Still beating on, boats against the current

We are still in a holding pattern. Making it toappointments, meeting new specialist, but something is different. Unlike thenormality of what we have been through, there is a stark contrast, this time.

Early on we developed a narrative, an elevator pitch, aboutwhat our daughter has going on. There was a need. We could see it through the subtlewrenching of the face, the slight tilt of the head, every time we mentioned theword “Craniosynostosis” to anyone, even many doctors. So, we worked on one.Hell, we even workshopped it, my wife and I, with each other. There issomething about dissecting and plain-speaking your daughter condition while sheis asleep in the bassinet right next to your bed. Something sobering.

As time progressed, and we tirelessly learned more, weupdated this narrative. We consumed the avalanche of information that we wereprovided, and transformed it into a description, adding an addendum to theelevator pitch. Regardless of the degree of understanding (medically orpersonally) we have been able to rattle this off, in unison, thousands oftimes.

But, now, things are different. This most recent batch ofunknowns has rendered us in a mire of questions. Finding ourselves in the familiarsea that we were thrown into the moment that our daughter arrived. Seeking alife 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, theyunderstand. They are not asking for the narrative. They are talking about howthe narrative affects THEIR understanding of what may be happening. They arespeaking to us FROM where we are. This has allowed us, for once, the chance tofocus on what is new. It is not going unnoticed.

Though we still do not have any answers, enough informationto provide (yet), or a date for her next surgery, this small change is makingthings easier. As a bit of a pragmatist, I am certain that it will not staythis way. That we will, again, return to the days of have to explain to healthcareprofessionals what craniosynostosis is, what it means to our family, and (mostimportantly) what it means for us. Speaks volumes to the state of things, Ithink. But, for now, we will take this dynamic shift as a sign that when wehave some answers, they will be more clear.