Friday, January 18, 2013

Our Decision To Implant

 Little did I know that by having a deaf daughter I would be thrown into a controversial cultural land mine. I love watching the show Switched at Birth on ABC Family because I get my ASL fix. In the latest episode the character Bay starts going to a Deaf school. In this scene she is with her deaf friend so it looks like everything is hunky dory, but she ends up being an outcast as a hearing person in deaf school.
The next show focuses even more on her being bullied. The show does a great job of portraying the ongoing struggle between the deaf and hearing world. The premise of the show however is about how we can all come together and be a family embracing the differences. 

I've actually gotten emails from some people in the deaf community that told me I would be making the wrong decision to give SJ a cochlear implant. Days after she was implanted a deaf friend saw my status updates about her surgery on Facebook and said

 "I hope she will be happy with her CI... I hope that is what she wants instead of a decision you are forcing on her... I will be there for her if she needs me.." 

Yeah, my two year old daughter who cannot communicate is recovering from a serious surgery and I get this message. That was almost 3 months ago and here we are ready to give her a second one. I would like to use my blog as a platform to address the reason why. There are a lot of reasons and I have shared them on this blog before, but I'd like to share with you a letter that keeps it all in perspective for me.

In April we first found out for the first time that there was even a remote possibility that SJ might be deaf. That month we took a trip to Texas because I was photographing a wedding. It just so happens that while I was visiting my inlaw's church there was a women signing during worship. God has a way with "just so happens"  doesn't he? I spoke with this women who is fluent in ASL and teaches sign language full time. We chatted and exchanged contact info. After reading my blog and keeping up with me on Facebook she sent me this message. I asked her for permission to share her words because it has been a lifeline for me throughout the ups and downs and I think there may be other parents in my situation that would benefit from her wisdom as well. This is what she sent (emphasis added)- 

I just read the update on your blog and I want to tell you I'm so proud of how well you are adjusting to all of this. I know it's incredibly overwhelming - all the tests, information, opinions, and decisions can seem like a whirlwind when you're trying to make the best decisions and time is of the essence. 
I just want to encourage you in trusting yourself and God to know what to do. 
He is leading you to the people you need to help you through this transition. You have a perfect, beautiful, amazing little girl and God has incredible plans for her! I have been & will continue to pray for you & your family. You are doing everything right and Sedona is so blessed to have you as a mom! It sounds like she is a perfect candidate for the CI and is still so young where the success rate is amazing. 
Continue to teach her sign, help her learn to speak & read lips, teach her in whatever method is best for her and for your family, but above all celebrate her as an amazing child unique and special as I know you do everyday. Don't listen to the extremists who might try to tell you there is one right way to raise a happy & successful deaf child.
She is going to flourish and do great things. Give her every opportunity you can, in whatever way that seems right for her. Allow her to embrace her deafness as part of who she is and not see it as a defect that needs to be "cured". Even people who gain perfect speech and "hearing" with a cochlear implant are still deaf. I know you all have a big journey ahead with lots of changes and adapting to do but Sedona is going to do awesome! I know a lot of deaf people, oral, signing, intelligible speech, no speech, ASL users, and signed exact English users, young, old and inbetween and they are all happy and well adjusted people. Deafness is a part of her but it doesn't define who she is.
Thanks for posting about your personal experiences. You have a great support system and a lot of prayer on your side.
As the big steps and challenges come, don't let them weigh you down. Celebrate the simple things and trust God to get you through the hurdles.
Lots of prayers! Keep us posted!


Lauren Duke said...

Oh friend, I am so sorry people judge your parenting decisions :( I think it shows your sacrificial love that you are moving your family to give her what you guys have decided is best.

Kate Ferguson said...

Praying for you all...can not imagine the weight this brings to you on a daily basis.

Marlene Magee said...

I love reading what your friend said about trusting in God because he the only one who can guide you on what to do so I pray God will give you what you need to go though this.

{amy} said...

What a beautiful, encouraging letter! I know how hard your decisions have been throughout this process. And in my opinion, if it's not a life or death situation then I have no room to judge anyone's parenting decisions about anything! I'm sorry that you've had to deal with people who don't agree with your choices.