Cochlear Implant Activation; I hate plastic slides.

This post has been a long time coming.  Thanks to all who have kept our little guy in your thoughts and prayers over the last week.  Aaron's new ears were turned on last Wednesday, which means a lot of things: 1-He can hear, sort of--it's probably a lot like being kidnapped and taken to an alien planet where the language, environmental sounds and foreign noises are all new and quite scary; 2--We're trying to learn how to be effective interpreters when we're not even on the same planet and can only 'guesstimate' how he is understanding his surroundings;" 3--I feel like a mother crocodile, gently hovering around my little one and snapping at any suspicious passers by; 4--I hate plastic slides; and 5--I love my husband and little boy more than ever, they are my source of strength and sanity. 

We were so excited last Monday when we got the official go-ahead from Aaron's surgeon, Dr. Warren, to turn on his bionic ears.  Even though Aaron's isn't very fond of this man (understandably), we have adored him.  His humble, strait-forward and unexpectedly relaxed bedside manner helped me keep my cool through the whole process.  Jonny always keeps a cool front, but we both appreciated how accessible he was to answer our questions after the operation.  And, he made us feel comfortable approaching him with our concerns (which we did pretty much every day after his surgery for a whole week). 

Aaron held his head at an angle for two weeks following his surgery.  We were worried about balance issues, or post-surgery torticollis (head tilt).  He couldn't walk until the second day after his surgery and even then it was a dangerous attempt for him. You can imagine our anxiety as we watched Aaron stagger around our little apartment with his head tilted to the left.  He was the second and youngest child in Utah to have simultaneous bilateral cochlear implant surgery, so it's rather new to "do two" and we were taking a risk, but with a lot of thought and prayer we felt it would be the best for him in the long run.  After week two the head tilt started to get better and we saw great improvements with his balance.  He's back to where he was before the surgery (but that doesn't mean his decision making has improved much--he still tries to scale the most unstable objects and tries to go downstairs like a "big boy," which led to a tumble down them today and the worst day I have had in a long time).    

As of 4/22 he is officially "on the air," as his audiologist Cache Pitt says.  I like that phrasing.  It's clever and doesn't deceive.  Being on the air doesn't mean the signal is clear (yet) and it doesn't guarantee that you are able to gain much meaning from the fuzzy, confusing sounds being broadcast.  Even the sound of your own parents voices can be distorted via electronic signal.  We prepared for anything to happen on activation day, and I'm glad our expectations were realistic.  Aaron screamed, cried and swatted at the coil (magnetic piece that transmits the electronic sound through his skull to the implanted portion) for the majority of the four hours.  Cache said that the first day would be the worst for Aaron, and his prediction has been accurate as far as the tantrums are concerned.  But then there is the first day mom won't leave him alone in his car seat because the coils keep falling off, and the first day he wants to play on the plastic slide and can't because it will erase the implant's programming, and the first day the kids at school don't understand why he has to wear bionic ears.  

Aaron has already proved that he is stronger than me through the firsts we've experienced thus far.  I didn't expect to break down the other day when Aaron wanted to play on the plastic slide at my mom's house.  Lucky for me my dad broke out the screw-diver and took the slide down from the playroom's treehouse while my mom distracted Aaron with the trains and my sister tied a rope and blanket around the ladder to prevent the kiddos from climbing up to the now nonexistent treehouse slide.  Aaron probably would have been fine if we just continually distracted him away from the slide for the rest of the day, but I was so touched by their sensitivity and accommodation.  

Why doesn't anyone ever talk about the short run?  Maybe I'm strange, but making the decision to permanently change my child and incumber his little body with this bulky, annoying device has been difficult.  Feelings of guilt creep up on me when he cringes when I turn them on in the morning, when other mothers say "that's quite the contraption, is the goal to cover it with his hair?," when he won't immediately respond to my voice like he did before the surgery, and when I wonder if I'm doing enough every day to help him adapt to his new world.  I know most of this is just part of the short-run, but it's teaching me a lot about the mother I want to and need to be for him.  I want him to be confident and able to kindly explain his implants to individuals who may ask ignorant questions.  I want him to have full freedom of verbal expression and need to give up my petty, time-consuming concerns about having immaculate table settings and raspberries in my ice cubes.  Most of all, I want him to love God and know that all that is beautiful and miraculous in his life is from Him.  It's so easy when you are vulnerable and overwhelmed to ask "why?" and feel inadequate about the unique challenges each of us are given.  It's much harder to become that person you know you need to be.  I'm thankful that we have our loving families, friends, each other and the heavens to help us be equal to the task.