I am sure folks will think the title of this post has something to do with the musical nature of our family… but it ironically doesn’t! It is about a choice, an epic choice I had to make fifteen years ago…
Fifteen years ago I went to my first ever conference relating to my sons’ blindness, Leber’s Congenital Amaurosis. At the time, my first son Michael was just a year old. I had not yet met anyone else that was blind and my husband and I ventured to the conference to meet other families on the same journey as us and to talk with retina specialists about what we could expect medically for Michael.
The medical part of the conference was almost none existent. The disease was so rare and so under studied that there was really no information to report (that has since changed!). But the family meeting facet was brilliant – finally I found others that were similar to me… or were they? I was crying every single day, but nobody there was crying. I was frustrated every single day, but nobody there seemed frustrated. I didn’t realize it at first, but I later found that the folks at the conference were further on their journey than I was. Some were years into living with blindness, others were just a few steps ahead of me. Regardless, what I came to realize was that these folks would be a wonderful resource for me on my journey in raising my blind son, and they would help me get to more days of happy and less days of sad.
The first lesson I learned at that conference was more epic than I could have ever imagined and it set the tone for the rest of my journey. When I walked into the relatively large conference style room I took a few steps down the middle aisle to look for a few seats for my little family. As I was trying to figure out where to sit I noticed a mom and her teenage daughter on the right of the aisle and a mom with her teenage son on the left of the aisle. Both moms were involved in arguments with their blind teens.
The mom on the right was actually being yelled at by her blind daughter because she brought her the wrong food. The mom pleaded with her that she had gone to the food table (a few feet away) several times to get what her child wanted and couldn’t understand why it wasn’t right or enough. The teen daughter rocked back and forth in the stationary folding chair (rocking is a habit some blind people have) while she barked at her mom.
On the other side of the isle I listened in on the argument that mom was having with her blind teen. Apparently, he was under the impression that riding a skateboard by himself through the hallways and lobby of the hotel, rolling his wheels all over the carpets and tile floors, was a perfectly acceptable way to get around the hotel. His mother, however, felt quite differently and proceeded to rant her case with him through gritted teeth that skateboarding through hotels is unacceptable. I found it completely interesting that she never mentioned it was not exactly great for a blind person to do, but that it was just a bad choice!
I found myself wanting to point at the mom of the skateboarder and shout “THAT! That is the argument I want to have with my son! I don’t want him barking at me over doing things for him! I want to argue about typical independent teen things!”
From that moment on I have looked at the challenges that come both of my boys’ way (I have a second blind son) and guide them in ways that ultimately have them rolling through life independently instead of rocking in a chair completely dependent on me.
Funny what you can learn when you listen to teens and parents arguing. Stay tuned to my journey and we’ll see if all the arguments me and my boys get into are as… educational 🙂
