Missing Me

Just when I thought we couldn’t get more bad news, we received the results from June’s Flash VEP (Visual Evoked Potential), which measures how the brain responds to flash stimulation or, in other words, light. The results showed that June has a recordable signal from her eyes to her brain, but the signal is reduced and it is slower than normal. If you are like me, you might be thinking, ‘okay, what does that mean?’ I asked that same question to the woman reading the results to me over the phone, but she kept repeating herself. She finally admitted that she didn’t know what that meant, and she would have to ask the doctor and get back to me. Why the doctor did not call me to discuss the results is beyond me. It is really unfortunate that they have someone call a mother with negative test results who can't answer any questions about them. But my aggravations with patient care and inefficiencies are for another post at another time.

While I still have not heard back from June’s ophthalmologist, the little I’ve researched about June’s VEP results sounds very similar to June’s ABR hearing test (auditory brainstem response) results. The ABR tests the brain’s response to sound. For those of you who do not know, June was initially diagnosed with Auditory Neuropathy, a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. This all leads us to believe that June may not have a hearing problem or even a vision problem, but a brain processing problem. In fact, June’s amazing audiologist at Moog sent an email about June and a brief summary of her health history to audiologists all over the world asking them to weigh in on her diagnosis. A world-renowned audiologist, Dr. Charles Berlin, has asked to review June’s health records to confirm if she even has auditory neuropathy.

So, we are still in the investigating stages and it seems that even previous diagnoses are now being questioned as we learn more about June. Every now and again, I have days where I feel sorry for my family and myself. I wonder why this is happening to June, and I fixate on how this happened. These days usually happen after we get bad news from one of the doctors, which seem to be occurring more and more. Yesterday was one of those days for me. I was desperately trying to make sense of it all and replaying days in my pregnancy wondering if it was something I did to cause all of this. I was so careful and yet this is all still happening and all I could focus on was "why June?, why us?"

Thankfully this morning, I was brought back to my senses. When I woke up I found Matt and June playing downstairs. June was smiling and laughing. That made me so happy. A little later, I turned on music and started to rock June to sleep. As she was looking into my eyes and smiling I heard Jack Johnson sing, “If you would only listen, you would realize what you’re missing, you’re missing me.” Never have words from a song spoke so well to me. It felt like June was saying that to me. Yes, I am sad about all of this, but I still have a beautiful baby girl, and I don’t want to miss a second of enjoying her. So, today I am going to step away from the doctors, the tests, and the worrying and focus on just loving Junebug.