The Illusion of Control

Sorry it has been so quiet on our end of things over the past few months. We have been settling in, finding our new normal, and discovering all that we can about our sweet Evie Joy. We kept her world very small at first. “Cocooning” is what they call it in the adoption world. The thought is to keep their world small when they first come home, make sure to work on forming those bonds and attachments. Teach them about home, about love, and about being part of a family. Evie has been proving that she is starting to understand all of these concepts.

It was hard when she first came home, because she would show indiscriminate affection to almost anyone she met. Imagine though, in an orphanage setting- all of the adults are there to care for you. So going from adult to adult to get your needs met, is just a daily necessity. That took a while to try and undo. What we have discovered over time though is that although she no longer is showing signs of indiscriminate affection, she does however have some indiscriminate friendliness. I truly think part of that is just her personality. She is a friendly kid. She loves people. She loves hugs.

We have also been working on pinpointing more of what Evie’s medical diagnosis and needs are. All that we “knew” from her file in China was that she had Cerebral Palsy. Not certain what type of CP, or what level of severity, we set out to find answers. We met with a Neurologist, and had him do an exam, and a new MRI. Much to all of our surprise, her MRI was clear. Completely and totally clear. As in no damage at all. Which is wonderful. Extremely wonderful. But leaves us wondering- Wait, what!? You see, Evie definitely presents like she has CP. But maybe it isn’t CP after all?? In the meantime, the Neurologist suggested just getting her into therapy and seeing how she progresses. We got her into Physical Therapy, Occupational Therapy, and Speech Therapy right away. This kid has done amazing at all of them! She is showing so much progress in all areas.

A few weeks into us being home, I started to notice that Evie ignored me quite a bit when I was speaking to her. At first I thought that it was the language barrier. Maybe she just wasn’t understanding what we were saying. Or possibly even some Institutional behavior. We decided to look into it though, and mentioned it to our Pediatrician. She said that Evie seemed to make great eye contact, and that she wasn’t super concerned- but that we could look into it for peace of mind. We got a referral for an ENT/Audiologist. They ran some tests there in the office, and felt that they were inconclusive. Evie has quite a bit of medical anxiety, and wasn’t super cooperative for most of the appointment. Once again, some of the time she reacted to the noises, and some of the time she appeared to be ignoring it. It was so hard to tell if she was scared, just being a toddler, or really couldn’t hear the noises. They scheduled for her to have an ABR. (Auditory Brain Response hearing test under sedation) The results were not at all what we were thinking. They sat us down after the test was complete to discuss the results with us. I was certain that they may find some hearing loss. Mild. Maybe moderate. Possibly one ear. The results were profound deafness in both ears. Not hearing loss. Not mild. Deaf. Profoundly deaf. In both ears. The room was spinning. My own ears were ringing. I was having trouble hearing what they were saying to us. I heard the words profoundly deaf, both ears, such significant loss that she would not be a candidate for hearing aids, or a cochlear implant. I was in shock. True shock. Not my baby girl. My baby girl has CP. Already things are going to be so difficult for her. She cannot be deaf too. This is too much. Too much for her. Too much for me. I was in denial. The next few days, and weeks proved extremely difficult. I felt like I was going crazy. It seemed like sometimes Evie would hear me, and other times it seemed like she didn’t. I even did a Google search “Can deafness come and go?” A couple of weeks after the hearing test, I received a phone call from the Audiologist. She said that she had been doing further review of Evie’s results. Said that something hadn’t sat right with her. She asked how I felt about the possibility that Evie may possibly hear sometimes, and be deaf other times. Upon further results of Evie’s test results, she had discovered that Evie has Auditory Neuropathy. It is a rare condition where the hearing comes and goes. Literally moments of deafness, and times where hearing breaks through. The great news was that this was a game changer for options for Evie. This meant that she could hear us at least sometimes. It also meant that she is now able to wear hearing aids, and possibly even be a candidate for a cochlear implant. We have had her in hearing aids the past few months, but so far it doesn’t seem to make a whole lot of difference. We are holding out hope that she will be a candidate for a cochlear implant.

I would love to tell you that I have taken all of this in stride. That I handled it with strength and grace. But I would be lying. It literally knocked the wind out of me, and has brought me to me knees several other times. I have felt the full range of emotions. At the heart of all of it though, I have realized it is a control issue. I hate things feeling out of control. I especially hate things truly being out of my control. I kept thinking- “This was not the plan. This was not my plan.” I felt like I had “chosen” the CP. I had researched it, looked up insurance co-pays, made a game plan… Deafness?? I literally know nothing about raising a deaf child. It all felt out of control. Out of my control. I begged God to change it. Pleaded with Him to make it better. I spent the drive time between Dr appointments praying and crying. There was a song that I kept hearing all the time on the radio whenever I got in the car. God used that song to begin to change my heart. It proved very cathartic, pivotal, and inspirational to me. He began to show me that He really may make it so that Evie can hear again, but even if not…  He is still good.

You see, I want it all to be in my control. In my timing. What I chose. The thing is- it was never in my control. This was always completely up to Him. The control I wanted so badly was just an illusion I had created.

Will you please join us in prayer about the next steps for our sweet Evie Joy? Prayers for guidance, wisdom, and peace. For us, and for the physicians. Today is a big day of next steps. We are meeting with a team to discuss the possibility of a cochlear implant. Please pray for us and with us that we will know what to do, and that we will be at peace with it all. Even the parts that are out of our control.