The first time a medical professional tells you that your child has tested unfavorably, there’s a bit of shock, perhaps a dose of denial, a battering of questions and a huge learning curve when it comes to “the system.”
The second time doesn’t get much better.
Baby C went for her follow up appointment at the audiologist today after having “referred out” (a nice way of saying, “you’d better test again, she failed this one”) at the hospital newborn screen. My hopes were high that there was fluid involved at her hospital screen, and my large circle of audiological friends have mentioned that the false positive reading on those tests can be high. Surely we wouldn’t have to face this twice, right?
But it was evident in our first round of testing that there was indeed an issue at hand. So going into the diagnostic test (that which tells us exactly what frequency she’s hearing at what levels), I tried to do mental preparation. But it doesn’t really matter how prepared you are. You don’t want to hear that any part of your baby doesn’t work like a majority of other babies do. They comfort with the fact that she hears us when we speak or sing, she’s just not hearing it all. It’s less about volume than it is about the complete range of sound. But the consolation prize isn’t quite what we’re looking for.
When H was diagnosed, our RIHP service coordinator – one of the best uses of our tax money that I’ve met to date – told me about a poem that described the experience as packing and preparing for a trip to one country only to get off the train and find you’ve arrived in a completely different place. You packed up and learned french before you had the baby, but here you are in Japan.
The first time around such notion was adequate. The second time you think, “how the H*&! do we keep ending up in the Pacific?!”
From here begins the long list of questions and appointments. You’d think it’s easier the second time around, and perhaps that’s true if you remain in the same county, but since we moved we get to re-research audiologists, ENTs, find a PCP, get our paperwork in order for the county health nurse, get connected with early intervention services and pray that all the individuals involved (including myself) check all the correct boxes so we can get her aided by 3 months for optimal results. We’ll probably opt for some genetic testing since the results seemed almost identical (waiting on Dr. Z to confirm that one, I don’t have a copy of both in front of me).
Besides the mechanics of dealing with another diagnosed hearing loss, my brain and heart have dumped into overdrive and overthinking. How do I explain this to people? Should we have done the genetic testing after H’s diagnosis, even though a majority of loss is from an unknown source? (My personality goes directly to “what did I do wrong?”). How do we explain to Miss M that she doesn’t need hearing aids although her siblings do? Does that make her the “lucky” one? And what about the future? We’ve intended to have 4 kids (with a much larger break before our next one). Does the increased chances – pending testing – of another hearing loss warrant rethinking that decision? And if we do decide to have another, and s/he lands in the Oticon
boat, does that make us irresponsible?
With H, I’ve been able to write off my reactions to “well, this just happens in life sometimes.” There wasn’t much anger at the Creator because my attitude veered toward an understanding that we’re not guaranteed perfection. But on the second time around, the temptation to feel like we’re getting the shaft looms much closer. We’ve had our share of “overcoming”, been given our “chance to learn” and live all those sayings that we can cross-stitch into a pillow. Did we fail our first “opportunity for growth”? Was that just a practice round? Why lump kids with “issues” into one family instead of spreading out the home visits?
So here we are. And whispering in the back of my mind is EB, a friend whose daughter faces far more difficulty and whose life has been much more significantly altered in ways that aren’t easily helped by wearing a small electronic device tucked behind her ear. It could be so much more. Our grief could be much, much deeper.
But, if I’m to be honest – a goal of this blog – I don’t feel like feeling grateful that our diagnosis is less cumbersome than another. I don’t want another diagnosis. I don’t want the visits. I want to age out of HMG and RIHP. I don’t want a reason for the public health nurse to know my name. I don’t want to compare IEPs for the next 18 years. I don’t want the people who are helping us to begin every sentence with “well, you probably know this because of her brother…”
I don’t want my “normal” kid to be the “atypical” one.
But this is just Day 1 of Round 2. Perhaps in the morning it’ll be different. Husband is a firm believer that it’s better to re-examine in the morning, after we have a chance to sleep off the day’s emotions. This is a good time to live by that assumption. So… good night world.