Sounding Just like Everyone Else

"Mom no one else plays the recorder anymore. It's a baby instrument!"
"No other instrument fits you. The piano is too long and you can't reach the pedals, others are too long like the flute and clarinet. Your arms don't bend the way a violin is held, the trumpet is too heavy, and I won't allow drums in the house." 
"But I just want to sound like everyone else! All my other friends have music lessons! Pleeeeassseee.." 
"Fine - I'll go to the music school and ask the front desk what they think you could learn to play tomorrow." 

It was four years after the recorder had been first introduced to me in elementary school. I was now in the seventh grade and like any other twelve year-old just wanted to fit in with the rest of the middle schoolers. Playing the recorder, the plastic white one that the public school system universally dealt out to every third grader, was NOT the solution to fitting in. I probably deserved some award for having braved every orchestra class through the sixth and seventh grade with my tooting and squeaking next to the Violin I section. I don't remember whether or not I got flack from my peers for still playing the recorder at that age, although now that I think about it it's probably because I have mentally (and rightly so!) blocked much of that period of my life from memory.
Whether it was going to Disney World in a stroller when I was eleven, or being put into a baby carrier on my dad's back at the age of six when we went to China, or still playing the recorder in the seventh grade - there are countless experiences where my size and age didn't match-up. There were a lot of times when this mismatch messed around with my head; the mental leap of needing to span age differences of five plus years would sometimes make me uncertain as to how I "should behave," who I am as a person, and routinely tested my own levels of comfort. It was through these experiences that I discovered what I believe in and what I know is okay with me. For instance, my parents learned early on that it's not okay with me to buy me clothes from childish stores because I would prefer to get the smallest size at a more age appropriate place. Just because it fits doesn't mean it's okay! Or just because I am the size of a younger child doesn't mean I should not be allowed out with my friends, my bed time and curfew shouldn't be restricted to what might seem on the surface to match my size.

I know that all of this might seem so obvious, but I have been shocked by how easy it is for acquaintances or even family members to forget that my physical limitations should not dictate my life. Having O.I. can sometimes involve a lot of hopping around islands. One island might involve being fitted for a pediatric wheelchair, and then the next hour an individual is off to his first job interview, going to a school dance, or getting her license for the first time. I refer to them as islands because each moment seems so isolated from one another, I myself still have difficulty meshing everything together - but I always remind myself that I strive to do what is best and appropriate for me. O.I. might encompass my entire life but as I have written more and more of these blog entries I have come to see that it rears its head differently in every situation. Sometimes it's barely noticeable and like a chameleon it quickly changes color to blend in with the background, or sometimes it sticks out like a sore thumb - reminding me to slow down a bit and take it easy.  
So whether it's playing the recorder at twelve, being treated like a child when you're twenty-three, shopping at kid stores as an adult, or finally getting your drivers license as a middle-aged adult - having O.I. is constantly reassuring and reaffirming each of us who we are as individuals. Its odd isn't it? It's so easy to only think about the times when having O.I. might undercut our confidence in ourselves, or make us feel embarrassed but I'd like to urge all of my readers to take a second and think of one reason how having brittle bones has helped them understand their own selves better.

"Mom did you go and ask the music school today? Did they say something dumb like I could play the triangle? Cuz that's just stupid, I am not going to play the triangle -"
"They said you could try music theory." 
"They said you could learn how music is written, and that you could write your own music. Does that sound like it would interest you?"
How could it not interest me?! Me? Write my own music?! And so it was that from the end of seventh grade to the time I graduated high school I took music theory lessons. This culminated in a song I helped to write for my high school chorus, and a slew of other pieces for the piano and violin. The evening the chorus was to perform the song I helped write I thought back to those years of embarrassingly pulling out my plastic recorder in the seventh grade. I smiled and laughed to myself wishing I could tell my twelve year-old self back then that in a few years I would be able to have some hundred voices singing the words I wrote.

The Balance:

  • Parents and family members can help kids with O.I. by instilling a strong sense of self; this makes future accommodations and decisions easier to grapple, especially when that child grows up and needs to make choices on their own
  • Sometimes you need to do things that must be done. I have found that these instances happen especially around things that I do NOT want to do. If you understand this then dealing with the more dreaded moments can be easier to swallow - you aren't expected to WANT to do those things, so at least you're responding in an expected way!
  • The cheapest and best management technique is a sense of humor
  • Though sometimes I am super self-conscious I have found that growing up with a condition that makes me visibly different from others has helped me put into perspective other situations in life. Reminding myself that I have come this far no taller than a yard stick helps to propel me forward
  • It's okay to be selfish at times: Do things for you, and better yet because they are what's best for you (admittedly I have to learn this!)
  • There are days when what gets me through my day is my desire to challenge others and prove everyone else wrong. Being able to surprise the world and people 'out there' can be daunting and exhausting, but if you think of it as an opportunity and an experiment where there is no correct expected outcome - the balance of who you are, what you want, and what you can do is then easier to manage because it's all up to you! 


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