Give me a break, please!

Ssshhh! I listen, then suspend breathing…Okay he is still asleep. Man that was close.

These are the thoughts that fill my head every hour or so all evening long. It’s so pathetic and maddening. When will I ever get to spend an evening relaxing? Why must he have trouble sleeping? He can’t hear anything, so what is always waking him up?

It’s driving me mad, MAD I TELL YOU!

I’m partially kidding, but mostly serious. My instant anger surprises and scares me sometimes. I have such a short fuse for the sleeping issue. I’ve got a right to feel this way though; our situation has been atypical in more ways than one. And to be fair, I’ve been handling myself really well, with a stable temperament, despite months of sleep deprivation.

Rich and I have patiently been sleeping apart for a while. (I have to sleep with E-boy to get him through the night.) I guess there have been 2 nights that we’ve managed to snuggle like married people. One turned out not to even mean a good night’s sleep for me, although Rich slept soundly. We were in an extremely old B & B, known for having ghosts, and were put in a room in the oldest section of the building. Those rooms are notorious for having the highest number of “incidents”. Of course there had to be an electrical storm during the night that took out the power. I didn’t move, or breathe, or sleep.

It was just like being home!

I read a blog post that made feel like writing about this topic. While reading her words I felt like I was lying in my own bed next to E-boy, getting the sh*t kicked out of me while calmly trying to settle him down. It doesn’t help that we can’t communicate. Signing doesn’t work in bed in the dark. So my firmness in handling him has to send the message. I have a maneuver that I usually end up employing as a last resort, but it’s inevitably the only way I’ve managed to get him to sleep for weeks.

But tonight I tried a new maneuver and it worked!

For the first time in his life (of 23.5 months) I was able to rub his back while he lay on his tummy until he relaxed enough to fall asleep.

It was delicious!

He’s even sleeping right now, but I don’t want to talk about it…

Deaf or deaf?

One of the many questions I ask myself about Ethan’s future is whether or not he will call himself Deaf (with a capital D) or deaf (with a small d). Essentially, will he be able to embrace his deafness in a culturally meaningful way, or will he just assimilate into the hearing world? Maybe he won’t call himself deaf at all. What we do now will to a large extent determine the answer to that question.

I’ve learned quite a bit about Deaf culture in the past 2 years, oddly enough without actually meeting or knowing a single Deaf adult. You might wonder how much I truly know about this topic without having made any actual human contacts, and to that I say that there is definitely a very human aspect to reading blogs, especially those that include video footage of the person signing rather than speaking. If I’m lucky, they include a transcript at the bottom of the page, otherwise it's a chance to fail an ASL quiz.

I’ve also read message boards and books and watched documentaries along the way. There are no shortage of opinions in the Deaf community about the cochlear implant, and specifically the decision parents like us make to implant very young children. I’ve seen arguments on all sides of the spectrum, ranging from total understanding and support to raging anger bordering on lunacy. The dictionary meaning for the term implant should start with the word “controversial” if you ask me.

I’m sure there are parents like us who have an implanted child who do not view it quite that way. They might be coming at it from a purely medical and technological perspective, which is where I come from on most days. But I have days where I understand the sentiment of the Deaf community, that deafness is not something that needs to be fixed, it is not a disability. In fact, most deaf adults I’ve read online would find the phrase “hearing impaired” highly offensive. And to think the hearing world finds that phrase to be compassionate and politically correct. It shows the lack of crossover between the two worlds.

Ideally, Ethan will be able to live in both worlds. I feel very strongly (and this IS controversial) that all deaf people have the right to learn their “native” language, which in this country is ASL. Whether or not he hears with an implant and speaks like the hearing world is not the point. He was born deaf and has the right to join that community if he so chooses and will only be able to do so if he learns the language. And what a beautiful opportunity that would be for him!

Believe it or not, as strongly as I feel about this, I really don’t hold judgement against parents who have different beliefs. If I’ve learned anything along this journey, it’s that we ALL have to make tough decisions on behalf of our kids and we need not waste time judging others, but look to others choices as a way to support and learn from one another.

So the question now becomes, how can we do the best job teaching Ethan to speak our language and sign another language, one that we do not even know? All comments are welcome.

(Ethan currently understands and can sign about 50 words)

Upswing

Ethan visited his audiologist and developmental pediatrician at Children's yesterday and the news couldn't have been brighter. His implant showed all normal impedances, which means it's working the way it's meant to and all systems are go. We're not sure why the implant shorted out recently or if it will happen again, we're just very excited that it's all working normally right now. We are also moving forward with the process of making Ethan a candidate for a bilateral implant, meaning he would be getting his other ear implanted.

And there is more!

Ethan has been experiencing a real surge of development across the board in recent weeks. He is walking now! We never see him crawl anymore! His sign language is in full bloom and he is starting to make progress with speech as well. He is sleeping better and showing more interest in food.

All this and he's not yet even 2 years old!

We're happy.

Happy Birthday America, Belated

Witness "The Farm", one of my all time favorite places to kick up my feet and truly unwind. Ethan was at Grandma and Grandpa's, giving mom some much needed time off with dad and close friends. We missed you Anne!





The drive from our home to the farm is a beautiful one, but not for the rider who easily becomes car sick. This region is part of the Appalchian foothills, there are steep, winding hills and it's surprisingly rugged terrain for Ohio. We snapped these pictures from the car, they're not great pics, but you get the idea. I felt an oddly comforting feeling by seeing these horses and an Amish farmer doing their work. Our society is so modern (us with our laptops, digital camera, and cochlear implants), that catching an occasional glimpse such as this helps trigger that feeling of connectedness to the Earth. It was sort of a perfect American moment actually.