Hearing, but not as you know it.

Tonight as I was getting ready to head to Utah tomorrow for Calvin's surgery, I wanted to make sure that I gave the kids every opportunity to ask any questions they had and understand what is going to happen to their brother. As I was trying to give them as much information as I could- for Aaron it's never enough by the way- I searched a few web sources that I had and came across this video:

I think it's a beautiful illustration of the kind of success I hope for Calvin. I
think it helps me put some of my fears to rest, but it also guides me to more realistic expectations.

I saw this posted on a Facebook page a few weeks ago, and it made my heart sink.Before I had Calvin, I had been exposed to Deaf Culture as a child, but never really knew or understood the complexity of their culture, their lives or their struggle. I want to say, I get the struggle now. I know how hard the deaf community has worked to find acceptance, to be advocates for themselves, to gain education, accommodations and rights. It has not been an easy battle for them. Sometimes, those of us who hear do not recognize how ignorant we are to the lives of those who cannot hear. So knowing that now, I understand why this post was made. In light of all that they have fought for, of course it seems like a cop out to just stick an implant in your kids ear, give them artificial hearing and spare them the fight, the frustration, isolation and loneliness that can come with hearing loss.

That being said, it doesn't mean that I was OK with the message. When I first saw this I was LIVID! I thought, "Just as it's wrong for hearing individuals to assume that every deaf person can and should get a cochlear implant or that their lives would be better if their deafness could be fixed, it's so wrong for every deaf person to assume that hearing parents are lazy, and that we don't care about how much our children can communicate and interact with their environment". Then I remembered a study I had been told about, and understood this even better. I was told by my audiologist that 75% of deaf children have parents who do not sign to them. I won't judge these parents, and neither should anyone else. I don't know what their circumstances are, how much hearing their kids have with other assistive devices, or how much access they have to intervention and education; but this video so beautifully demonstrated why it is IMPERATIVE that children continue to learn sign language after a cochlear implant.

Sound that is processed from an implant is artificial sound. It is not natural sound amplified like it is through a hearing aid. It is a beautiful invention, but it is not perfect. 22 electrodes cannot possibly recreate the clarity or range that 30,000 tiny hairs can produce. After seeing how much sound this beautiful girl was still missing out on, I know that Calvin will still need another form of communication.  I still feel like we are making the right choice for Calvin. But now I see it with even more clarity. It's not one choice, it's choices. An implant with spoken language vs.American Sign Language is not mutually exclusive. It doesn't have to be one or the other, and more importantly... it shouldn't be!

Pins and Needles and Implants

If anyone had told me what a roller coaster ride this last year would have been, I would have politely declined my turn and gotten some cotton candy instead. I think I've done a pretty good job of whining about how hard it's been, so I'll skip that part, but OH MY! We are down to 4 days to go until Calvin's implant surgery. I remember thinking, oh wow! He's 6 months old, we only have 6 months to prepare ourselves. Oh wow! He's 8 months, we only have 4 months to prepare ourselves. And now, here we are. And for everything we've done, I still don't feel ready.

I can't even process how I'm feeling right now. If I just think about things in a very superficial, matter of fact way, I can manage my day and do what needs to be done. But as we get closer and closer to Friday, this is getting much harder to do. If I start thinking about things like: what will it be like to see him with his head shaved? or...how will he feel when it's done and he wakes up? or... how long is it really going to take? and...what will the Dr. say to us before the surgery? And WORST of all..... what if something goes wrong? What if what we're doing is wrong?? ..... I start to cry. I apologize now for the little melt down I had in Jo-Ann Fabrics tonight. It was humiliating, and I'm sorry to anyone who saw it.

I wish I could fast forward this part and skip ahead to when he's a happy, naughty, precocious 18 moth old little boy and his hair has gown back and the scars have healed and his implant works and he still signs like a mad man. I wish I didn't have to see him in pain. I wish I didn't have to remind myself every day of why we're asking him to go through this. I wish I could have more faith in myself that it's the right thing to do. I don't want to miss him growing up, so I wouldn't wish to skip that part.... but I wish I could look into the future and see a bright, happy young man who is pleased with his life and has no regrets for the choices we made for him. I wish I could see me, satisfied with the work that I've done, and know that I did all I could do for my baby.

On the flip side of all my nerves, I get almost giddy when I think of the possibilities that are going to open up for him now. On May 3rd, when his implant is actually turned on... my baby will hear my voice say I love you for the first time. . He'll hear his Daddy's dumb jokes and baseball stats and that he loves his little boy more than his own life. He's going to be able to hear all the sounds that his obnoxious toys make. He'll hear music, and the sound of life as it happens in a family. He'll hear his big sister sing along to every song she hears, even if she doesn't know the words. He'll hear his brothers beg her to stop and tease her unmercifully. He'll hear the stories, poems, essays and songs that she's written for him, about him and because of him.  He'll hear himself cry, and laugh. I hope so much that he will recognize what a beautiful sound that laugh is... and just keep laughing.

And I guess if I can't see into the future, I can look to the past and be grateful for how far we've come and how much we've learned.  I can see the support and wealth of knowledge that has been available to us. Best of all, I can see how much love we have been blessed with.

 I can also look around and be more aware of and grateful for what is happening right now. While I don't know how many friends Calvin will have in the future, I am grateful for the ones he does have now. More importantly, I'm grateful for our friends who haven't shied away from introducing their kids to him, and have started teaching their kids a few basic signs so that he can communicate with them.

I may not know what Calvin's health will be like in the future, but I can be grateful that it seems to be stable for now. There are a few hiccups that have come along lately, but we are figuring them out and dealing with them better than anything that has been thrown at us before.

I don't know what technology will be available in the future, but I'm grateful for what we do have access to now. It might not be 100% perfect, there are risks, it's not a cure all, and it doesn't mean that we won't have to work hard; but at least there is something that can offer more than 'hearing aids can't help and he will live without sound forever'. I don't know if my older kids will feel like they were left out and didn't get enough attention, but for right now I am exceptionally pleased with how much they love their little brother and would give anything to make him happy.

Maybe my fear and anxiety is unwarranted.Maybe I'm just a neurotic mom. Maybe not. Probably. I don't know. I've never gone through this before. I think its normal to be apprehensive and afraid and excited and thrilled and nervous all at the same time. It's probably not normal to fall apart in a fabric store though, so perhaps I should take my Dr.'s advice; which was to "Get a grip and rise to the occasion". Yes, he really did say that to me once. And it was exactly what I needed to hear then , and every time I've remembered it.... like tonight.