Tuesday, June 10, 2014

challenges in life





A lot of prayer, thought, and many discussions went into our decision to have our young son receive cochlear implants.  They are a medical miracle, allowing people with severe to profound deafness to be able to "hear".  I put that in quotes because it isn't hearing as we know it.  Rush Limbaugh recently opened up about having his second cochlear implant surgery and expounded on what it is like to hear through them.  He grew up hearing then became deaf as an adult.  He is able to compare how he hears through his implant and his memories of how things sounded when he was hearing.  I value the information he has to offer.  It is so helpful for me to have more of an understanding of what it is like for Caleb.  The implants do give him hearing, but his little brain is working pretty hard to gain understanding from what he hears, and also from filtering out other noise to focus on the spoken language. 

The tunes were pumpin', but he wasn't able to enjoy them like others do.  We have to aim the ear buds into the microphones on the top of his processors for him to benefit.  There's also a special audio cable that can plug directly from the ipod into his processor. 

Cochlear implants have been around for more than 30 years now.  A very determined man who witnessed his father struggle through life with limited hearing invented them.  To learn more about them, you can go here  Cochlear History These life changing pieces of technology are also very controversial.  In the Deaf community, some have very strong feelings of opposition towards cochlear implants.  I can completely understand the desire of a group of people wanting to preserve their language, their culture.  They are happy and successful, with full lives.  I do not, in any way, judge them for being against implants.  Deaf people have to live in a hearing world and daily deal with the challenges of not being able to communicate as effectively with the majority of people around them with out much effort and patience.  My sister is deaf and I was a sign language interpreter for many years, so I have had the privilege of being a small part of the Deaf community.  The culture is fascinating, and the language is beautiful.  Some deaf people see cochlear implants as a threat to their way of life because with implants people sometimes associate themselves more as "hearing" than Deaf.

Knowing this, several professionals on our journey towards implants asked me how my sister reacted when she found out we were having our son receive cochlear implants.  A couple of times, I fought tears as I had the opportunity to tell them about my amazing sister.  Her response to me has always been one of love and acceptance.  "It might not be what I would choose for my son, but I completely accept what you believe is best for your son."  She and I share a very close relationship.  This could have been an issue that caused tension and strain between us, yet it didn't. We have taught all of our children to sign.  They are by no means fluent and I need to be better at continuing the instruction, but we want them to be able to communicate with their deaf aunt, uncle, and cousin.  We want them to know and appreciate Deaf culture.  Caleb will grow up knowing that it isn't his deafness that defines him, but his faith in God, and who God has created him to be.   

I will be forever grateful for the support we've received from our friends and family...especially my sister who is deaf.  She has taught me so much about perseverance and hard work...love and acceptance.  I value our relationship deeply.  Walking this road with my boy isn't always easy.  As a mother, my natural tendency is to want things to be easy for my kids.  I want to protect him from the questioning looks, and "what are those things on his head??" questions.  Seeing them struggle whether hearing or deaf is just plain hard.  Yet it makes us needy for God's help and guidance.  By His grace alone we learn and grow through our struggles, and come out on the other side closer to Him and confidant.  So often I am tempted to question God.  Why are people disabled?  Why the struggles?  What is the purpose of the pain so many experience?  My heart aches.  These questions will probably never have answers, but I so appreciate the many. many incredible attitudes I see in people who face strong challenges in life.  That's what I hope Caleb learns...and my other kids too.  There are many things we can't control in life, but we can control our attitude, our faith, and our beliefs.      


Here are a few previous posts I've written about advocating for a child with special needs:
accommodations, IEP's, and 504's
advocacy
cochlear implants

2 comments:

  1. I am so glad you wrote this post I want to tell my niece about it. Her newborn was jus diagnosed being severely deaf. I know this will be an encouragement to her!

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    1. Hi Tesha!! I will be praying for your niece. If she has you on her team, then I know she is well supported!!! :)

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