The Choices We Make

When we found out about Eliza's hearing loss, and then Johnny's more severe hearing loss, we were unexpectedly launched into a world that we knew nothing about.  Immediately people began bombarding us with questions about what we were going to do.  Decisions were going to be made over the next little while that would affect our kids' lives forever.  It felt like a lot of pressure to make the right choice.

The pressure came from all sides.  From things we read online to professors in school to medical professionals.  Everyone seemed to have an opinion with points to back them up.  It became clear that we were in deep, and that ultimately, it was something we had to decide for us.

When Eliza failed her hearing screening and we learned that her hearing loss was permanent and progressive, we began to wonder about Johnny who was still not talking.  Questions were raised about his hearing, and the more we looked at him, the more it became clear that he could not hear.  It was at this point that Erica began to learn sign and teach it to Johnny.  He picked it up fast, and still learns signs very quickly.  

In December, when we took Johnny in for his ABR, we found out his deafness was in the severe to profound range, and that hearing aids would probably not work for him.  The audiologist who was performing the testing asked if we would want to do a cochlear implant.  We were just trying to accept the fact that our son had already lost pretty much all of his hearing, so we had no idea about cochlear implants.  The audiologist then said that if we were considering at all cochlear implantation, then we should stop signing with him, since this would just cause frustration down the road.

Others would tell us that it would be ok to sign a little bit with him, until he got the implant, at which point he would be "cured" and not need to sign.  We were continually frustrated by this supposed choice we had to make to do either or.  The more we thought about it, the more we thought that we did not want to choose between the two, but to choose both.  Our kids would be bilingual and bicultural.

The realities for us were these:  Johnny and probably Eliza would be more comfortable signing as their primary mode of communication, and The families they were part of and the kids they would live near and the world outside their home would be an auditory world.  We wanted to give Johnny and Eliza every opportunity to communicate that we could.  We also did not want our kids to ever feel that they needed to be fixed or cured.  We want them to be proud of who they are, and to never feel that there was anything wrong with them.  These are the things we considered in making the choice to put Johnny though surgery and to keep teaching him sign language and to learn it ourselves.  We understand that this may not be the right choice for everyone.  I guess the important thing is to remember that no one is going to know what is best for your kids better than you will, and to have confidence in the choices you do make.  The other thing we've learned is that the right choice, whatever it may be, is rarely the easy choice.  It is always hard, no matter what you choose.