Friday, October 22, 2010

It's time to share

I have been terrible lately with blogging, and I am determined to catch up and re-commit myself. The main reason I haven't updated is because I wasn't ready to share. Over the past several months we have been worried over Jack's speech development, because he wasn't talking. He would babble for several days in-a-row, then quit for several weeks, never progressing past that point. We finally had a hearing test done about 2 months ago, and the results were shocking. Jack has a severe to profound hearing loss, which basically means he's deaf. It was really hard to hear such a diagnosis and I was in denial about it for days afterward, refusing to believe it could be that bad. I mean, how could we have not known? His newborn hearing screen was normal and he babbled as a baby, and he is very convincing at following directions and doing what you tell him. It turns out, he's super smart and figures out what you want thru other cues.

I wanted to post an entry about this for weeks now, but couldn't make myself sit down and do it. I guess I wasn't ready for the rest of the world to know yet. If you know me, you know I have a tendency to down-play things so I can remain more optimistic about it. I'm not the type who calls all her friends and cries about it. When Jack was born, he stayed in the NICU for 1 month and 1 day, and nearly died. I never told any one about the seriousness of the situation until after he came home, when it was all clear and no worries. I think that's something I need to change; it's just not healthy to deal with it all on your own. Anyways, the doctors suspect that his hearing loss is a result of the aggressive antibiotics received during the NICU stay. It's frustrating to think about that, but it's easier when I consider he wouldn't be alive if not for those medicines and treatment.

So what's the plan for Jack? He has been in hearing aids for 7 weeks now, and is scheduled for a cochlear implant surgery on Monday, the 25th. I am thrilled that we have this option available to us; with it, Jack will be able to hear within the classified "normal" range, and I am told that he will even be able to hear whispering. With his hearing aids, Jack is in a mild to moderate hearing loss range; the difference in him the past 2 months has truly been amazing. He knows my voice now and looks for me when I talk. You cannot imagine how much you take hearing for granted, until your child cannot hear. It's a miracle to me and I feel true joy when Jack responds to my voice. With just 2 months of hearing Jack is learning that sounds are important and have meaning. He is imitating everything we do, and tries to talk like we do. He knows that specific sounds are appropriate for the toys he plays with; for example, cars go "beep, beep" and airplanes go "ahhhh" (according to his speech therapist). He says "mama" for "more," and "ba-ba" for "bye-bye." He is thriving with the limited hearing he has now. That is why I am so excited to see him once he has full access to sound, with his cochlear implant. He is having his left ear done first, and then, within a few months, we will decide if we will implant the right ear.

I feel as if I were being prepared for this years ago. I grew up with a dad who was very hard-of-hearing, who eventually got a cochlear implant. Additionally, I took ASL (sign language) classes for 2 years in college. For a normal hearing girl, I have a fair amount of knowledge about the deaf community and sign. I remember learning all about deaf culture in college, and specifically about this controversial procedure with a cochlear implant. The deaf see it as a negative, as if you were taking one of their own deaf children away from their community. Sign language is a valid option, and if it were 20 years ago, I would have zero problem with Jack signing. Our family would learn to sign and communicate in that way. But the fact is, it's not 20 years ago and cochlear implants are very, very good. The implant inside the cochlea is designed with extra "space" so no further surgeries are needed to update the device; you update the external processor (what's worn behind the ear) and that's it. Why wouldn't I choose this option for my son? The fact is that I want him to live as normal a life as possible. I don't want him to struggle in school or to feel like an outsider. How often do you see a person signing, and you go and strike up a conversation with them? You don't. You don't know how. That person is perfectly capable and social, but you don't know how to communicate with each other, without feeling awkward. With this implant, Jack will never know this dilemna. He can be mainstreamed in school, and talk with his hearing friends. I am so grateful for this technology, and feel so blessed.

We have excellent medical people, including his audiologist and speech therapist to guide us through this process. We have a family who loves Jack more than the world, and gives us continual support. We know this journey will be long and at times, difficult, but I know that everything will be okay and that most importantly, Jack will be okay. I thank Heavenly Father that Jack will never know the difference between natural hearing and electronic hearing. For him, it will all be natural and the sounds lovely. He can grow up in primary and sing during their sacrament programs. These are all things I look forward to. He is truly so smart, and has such a happy, joyful attitude, that I know the sky is the limit for him.

9 comments:

Ashley Dickman said...

what a special little guy you have been blessed with! one of my friends is going through this same thing right now... her ENTis a member of the church and told her there is no reason that someone should be "deaf" today because of the technology. Basically, what you said. Jack is obviously a VERY smart little booger and determined so this challenge won't be much of a challenge for him- probably harder for mom and dad. What a blessing to find it early and how fun for you guys to see his little personality come out even more! He will be in our prayers- and as for you... except help and start talking! :)

Amy Brinton said...

Erin, you are amazing. You have always had such an optimistic, clear-headed outlook on life. Your preparation to be a mother--which included the experiences you mention relating to hearing impairments--is blessing Jack daily. We will also be praying for you, for a successful surgery, and for Jack's continued happiness!

Amy Brinton said...

Also, Eric just reminded me that Rush Limbaugh has had cochlear implant surgery. To think that someone could be so successful in the radio business of all things with a cochlear implant is truly encouraging. Medical advancements like this are certainly God-given blessings.

Ali said...

Erin, you're so great! That was such a moving entry. You have such a strong testimony. Thank you for sharing it. I have a friend with a son that has cochlear implants, and he has done so well with them. Jack is such a cutie! You'll be in my prayers as well!

Jill said...

Your family and Jack have been in our prayers. Jack is such a wonderful, amazing kid that is so blessed by our Heavenly Father's plan that has prepared you in so many ways as you mentioned. What a testimony builder! Dealing with a suddenly busy schedule and so many appointments to attend is hard on little guys and Mom besides all of the other physical changes. Good luck! Our prayers and thoughts will continue to be with you. You are such a strong woman that I admire greatly!

Corrine said...

Thank you for sharing your experience! I love to hear your testimony, it only makes those who read it stronger. We are sp blessed to have a Heavenly Father who loves and knows us. Jack is blessed to have a mother and father who love him and can make decision that will better his life. You are amazing and now that you have shared we can keep you and your family in our thoughts and prayers!

Ashley Dickman said...

http://sweetolivet.blogspot.com/2010/10/i-like-it.html- thought you might want to see this...

Ashley Dickman said...

I sent her your link too- hope you don't mind!

The Brights said...

You may be well aware of this awesome CI resource, but if not, I wanted to share:

www.cicircle.org

There's nothing better than connecting with other families walking a similar path!