When chatting with a coworker via email recently about Rebecca’s condition I typed something along the lines of, “When her world goes dark and she can no longer show us the world we will take the lead from there”. I didn’t think much of it at the time, but then I realized how true that statement really was.
I of course need to start this post by saying that Reagan has opened my eyes to so many things in this world that I just did not see before and Rebecca is just opening them even wider. I think most parents will agree that be it one two, three, four kids etc. that each one of them in their own special way have showed them something about the world that they may not necessarily seen prior. When we were told that Rebecca was deaf, I figured ok, we’ll get her cochlear implants and she will be able to hear, a couple of extra doctors appointments and surgery and we will be good to go. Well, that was pretty naive on my part to put it lightly. What I did not realize is how much my world was about to open up through the eyes of our little girl. I learned, and am still learning, about an entire culture that existed everywhere around me but I just never saw it until she showed it to me. When we did start to realize the magnitude of the situation we decided that we needed to jump right in and immerse ourselves in it. We went to events that were specifically targeted towards the deaf and hard of hearing community and we met with other families that have traveled the same path. We found support groups that we could learn from and offer support for others that also would find out that their child was deaf. At one of these events I came across a deaf woman, and I won’t soon forget how shocked I was that day with what I experienced. It (in my best sign at the time) went something like “Hi….my……name….. (Long Pause) J……A…….K…….E …… my son, no no scratch that” as I am flailing my hands in the air trying to figure out how to say “I mean”, all the while this patient woman is watching me completely destroy her language. I soon finally got out that “My name is Jake and my daughter is deaf and I am learning sign language”. She politely interjected before I could spell her name, I’m not sure if it was for my sake or hers, but what she interjected took me by surprise with two hands in the air and a look of total joy she signed, “that’s awesome”. This sign I actually knew but I thought I must have been mistaken, why would she tell me that it was awesome that my child was deaf when all of my family and coworkers were giving me their condolences? But then I “got it”, this is not something that is viewed as a disability by the deaf community. In fact, I learned that the word disabled is not used in deaf culture. What I did learn is that to be deaf was to mean that you were a part of something much bigger. After a while I became envious of what they had. How could something that I perceived as a burden be something that they viewed as a privilege? Rebecca had an instant family who immediately took her in as one of their own, and we were so happy and relieved for that. What we thought would set her back was in fact something that would make her stronger, and at that moment when I finally got it, I knew she would be ok.
Rebecca introduced us to a world full of empathy and acceptance, something that you generally don’t see every day. Of course there are two extremes in every culture and not everyone was supportive of the choices we were making for her (giving her the option of hearing through technology that is), but what we saw was far more good than bad, and the bad side is a story for another day.
She introduced me to a new language. I always wanted to find the time to learn a new language but it would never happen because the time was never available, or so I thought. After eight months now, I’m still lucky if I can connect what’s in my brain to my hands, but I am starting to understand structure and concepts that I had no idea were even a part of sign language. Again, the naive side of me figured, “how hard could this be, for every word in the English language there has to be a sign right? I’ll just get a sign language dictionary right?”. Nope, not even close. There is so much depth that I initially did not understand, it involves facial expression and body movement, etc. I can’t even begin to articulate the complexities of the language, not to mention that there is a huge difference between signed English and ASL, bottom line is it is very complex and I will likely never understand all of the nuances but then again no one will as it is always evolving. But what she showed me was so much more than learning a language, she taught me how to be expressive as well as humility. Before we started this journey I would be the guy in photos with the pained expression on my face trying to force a smile because frankly, I did not know how. Now I’m the guy at the front of a classroom full of people telling a story, simply by my facial expressions and hand gestures. I am learning how to read a story book not by simply reading the words on the page but by adding a whole new dimension and context from the illustrations that the books written word just doesn’t get across.
And now we come to today with Rebecca’s latest diagnosis and it’s a whole new world with new things to discover some heartbreaking but others rewarding some challenging but others simple. With Rebecca as our pilot as we venture into this new journey and with the three of us are her as her copilots I can only imagine what she will be able to overcome how much she will show us along the way and how much we will grow and learn as a family. Unfortunately at some point on the journey there may be darkness for Rebecca but she will never be blind because she has three people along with many others that will be her eyes and take over leading when her world goes dark but for now we are perfectly content to continue to explore the world through her eyes.