Little Earthquakes

Photo by CL at Deer Hollow Farm

Early on, I resigned myself to being in the
dark on all but the most important things,
she said, & it's not such a bad thing because you

don't see a lot of the stuff you usually get anxious about.
-Brian Andreas (I get a daily Story People email, and there have been a lot of good ones lately. Can't stop quoting him.)

Of the many, many questions Vince and I were asked on Vivian's pre-op day before her heart surgery, the one I remember most is "Do you want to know as much information as possible or just the minimum about Vivian's recovery in the CVICU?"

I am a big picture girl. I enjoy details insomuch as they help me get to the big idea, the main goal. Otherwise? Not so much. In the case of the CVICU question, I deferred to Vince, who loves all bits of information and has the ability to process, file and retrieve all those details.

Last week we had Vivian's cochlear implant consultation. After over three hours of baby wrangling, manically singing "Wheels on the Bus" to turn a fussy babe into a smiling one and doling out snacks in the midst of trying to do behavioral hearing tests and talking with the wonderful audiologist and then the kind-hearted doctor, we walked away understanding that Vivian's not a candidate at this time.

Though we would have only considered an implant for her left ear (severe-profound loss), the hearing in her right ear is currently helped enough by her hearing aid that she's not a candidate for a CI unless her hearing deteriorates (a possibility in CHARGE) or her speech development stalls down the road.

During our consultation with the CI doctor, he pulled up Vivian's CT scan from a year ago. This CT scan was used to confirm Vivian's choanal atresia (blocked nose) last year but I had asked for it to include cuts that showed her ear structure, as atypical anatomy is very common with a CHARGE diagnosis. For a year, I have asked our doctor and various residents and assistants to tell me what they saw regarding her ears in the CT. I've gotten everything from "Looks fine" to "Here's the report" (which only confirmed her choanal atresia) to somewhere along the way coming to the conclusion that they didn't take the proper cuts to get information about her ears.

When the cochlear implant doctor pulled up the CT last week, he took a quick look and was able to tell me all sorts of information about her ears that has been there all along. One example being that Vivian is missing semicircular canals (an assumption I had made, given her delays in gross motor skills and the fact that this vestibular dysfunction is common in CHARGE). But there it was in black and white.

When I called Vince to tell him about the appointment, he was upset that the information had been there all along and wasn't shared when I had asked for it repeatedly. I, on the other hand, wasn't so much upset as left questioning my approach. Had I not been clear when asking my questions? Not persistant or pushy enough? Where did I go wrong here?

I'm wondering if my big picture approach is a good fit with such a complicated diagnosis as CHARGE. And though I think I attend to the details when they count, for some reason, this little earthquake has shaken my confidence. And I'm a fairly confident mother - not based on the fact that I think I'm all that or have mad skills (I'm not and I don't) - but based on my basic philosophy of parenthood: there are so many ways to be a good parent, that there is no one right way, and that my sometimes renegade mothering is how I learn what's best for Vivian and me. I am confident in my role to love and laugh and enjoy and guide and model and make mistakes through all the little moments that lead to the big picture: Vivian becoming all she is meant to be - whatever that may be - content, independent, kind-hearted, passionate, creative - whether she's a brainy professor, an artist or a burger flipper. (This was my take on parenting before Vivian was born, by the way - this perspective is not the result of her special needs.)

On the way home from the CI consult, Viv was in a deep carseat sleep. So I stopped at McDonald's and bought myself a big mac (this was my second big mac in my whole life, and I still have no idea what possessed me to order one, but it was good) and a diet coke. I drove the rest of the way home and then ate my lukewarm big mac in the car while parked in the driveway with exhausted Viv slumbering away. And I thought about all this stuff. And I still am. But now that I've blabbered on about it here, I have a plan, I've learned something, and I'm going to let the little earthquake go now and trudge on. I'll hold on to my big picture, and do my best to enjoy the little moments that create it; because for me, that's what parenthood is about.