Shortly after my first son was born, my toddler nephew was over and fell down the stairs. Our next door neighbor was an EMT and we called him over immediately. He checked out my nephew, said he was fine and joked that "kids bounce." Ten years later, I still love to say that, especially to first time parents. What I didn't know is that hearing could bounce. What's been happening since last time I posted? L's hearing has been bouncing. Her left ear (once the good ear) has bounced a tiny bit but has remained in the profound range. Her right ear has been bouncing up to the severe range. The ranges are normal, mild, moderate, severe, and profound. People have been saying "that's great!" But it's not great. It's frustrating. If she is severe she can barely function with a hearing aid and is not a candidate for the cochlear. Also her hearing is not consistent. It can change several times of day. People will talk to her and she will respond and it's as if she is cured. No big deal. Meanwhile, I am coordinating doctor's appointments, 4 in the last seven days plus speech therapy. I am making sure there will be a "Deaf Child at Play" sign in the new neighborhood we are moving to and trying to figure out how to get the house accommodated with deaf technology like blinking lights for the fire alarm. Because when Lucy is not aided, she is deaf, plain and simple. We have gone from wanting to send her to the private Catholic School our boys attend to the public schools to checking out two deaf ed programs in other school districts and back to the local public school. If it sounds as if I am asking for pity, maybe I am just a bit. I think it is so hard to admit weakness as a parent, especially as a mom. I have to stay strong for my daughter, for all of my children. I am not disappointed that I have a deaf child. My daughter is an amazing blessing who can and will accomplish anything she puts her mind to. I am terrified of making the wrong decisions, of not giving her the right support, of not being a good enough mom. When people ask how they can help, I don't know how to respond. I want to ask if they can be me for a few days while I just go to sleep. What L and I have in common right now is that we are both tired. It is so tiring for L to take in the world in a different way. She has to be so much more alert and focused, watching our lips or our signs or the world around her for clues as to what is being said. It's easy for me to listen to the tv and to type this at the same time but for L, listening requires 100% of her attention.
Where does that leave us. The doctors are still pushing for the cochlear surgery, thank goodness. Tomorrow is a 2 hour vestibular test. Thursday is a presurgical check-up plus a special vaccine. Friday is a sedated ABR. They will put L to sleep and check her hearing by reading brain waves. In two weeks we will be at the hospital for about 7 hours meeting with a team of doctors and doing more tests. And of course there will be shorter appointments between now and then. L made out her summer bucket list tonight (which I will post this weekend). I just want her to to have fun between all these appointments, reach her goals, and try exciting new things.