We once again battled devastating hyperacusis yesterday. I took Erik to see friends of ours, and it was initially a complete disaster the moment we stepped through the door and he heard their children making the normal noises all children make. He climbed me, straddled me, and held on for dear life, bawling his eyes out. He is getting so big that when he does this, it makes walking anywhere quite difficult. I am beginning to feel like a telephone pole with an elephant clinging to it. Erik's sleep has been hit and miss lately, and when he is tired, his hearing seems even more sensitive, if that is possible. I often have a difficult time believing this is the same kid who failed several hearing tests when he was born! Luckily, our friend Alan was nice enough to take Erik on a quick motorcycle ride and over to meet the neighbor and his chickens. He seemed to calm down immensely after that but was still quite jumpy. Once both of their children hit the sack, Erik's personality did a complete 180, and he was adorably chatty, climbing over all over us adults after being virtually comatose for an extended period of time. This is such a frustrating mystery to me. In our day to day life, hyperacusis is by far the most disabling part of what comes with this syndrome. It can make or break any outing instantly. I have never been this aware of my surroundings in my life. I know precisely where the milkshakes are made in restaurants and the exact noise the UPS delivery van makes when it backs up. Even when Erik is not with me, I am acutely aware of sounds and take mental notes on them if I believe they may be upsetting to him in the future. I took a quick peek at what the book said about this particular problem, and they recommended making headphones or earplugs a part of play to gently convince a child to wear them later in a noisy situation. There were also descriptions of children exactly like our son for whom even applause during church is upsetting and calls for a child's immediate removal. Apparently, I'm not the only mother sitting in the hallway at church. Our upcoming trip to California on a small plane has the potential to be a nightmare, and my stomach does flips just thinking about it, but we have plenty of time to prepare. The flight is almost always a deafening, bumpy one during which I can't help but think of the crash scene from the movie Alive or start singing Patsy Cline songs to myself (yes, I'm morbid that way). Despite the fact the route is quite familiar to me and I have flown many times, you will likely find my eyes tightly squeezed shut, a plastic cup of sloshing wine in my hand, and a very rudimentary, desperate prayer on my lips. I can hardly imagine what it will be like with Erik by my side, but I am looking forward to having someone to take care of and focus on at the same time. We'll see.
Life with Erik is always an adventure. Even if we have to hold on for dear life.