An Anna update - the long journey

A few weeks ago, I promised an update on Anna XiaoChun.  I have put off writing it time and time again for fear of not being able to fully, thoughtfully express the findings, thoughts, feelings, worries, and hopes.

Shortly after we arrived home, other people began to tell us they thought Anna could hear.  Anna was so perceptive and so animated, we wondered ourselves.  Her initial audiology testing showed "moderate" hearing loss, and we thought, "well, maybe..."  Over time, though, we began to doubt that diagnosis and so we were not surprised when the Auditory Brainstem Response (ABR) test showed that Anna has profound sensorineural hearing loss in both ears.  In layman's terms, the results are that Anna is deaf.

Anna's deafness is not a surprise to us.  That's exactly what her referral paperwork said about her.  More importantly, Anna's deafness is not a surprise to God.  One of my favorite scriptures is how even the very hairs on our heads are numbered.  For those who don't know, most sensorineural hearing loss is the result of damaged hairs in the cochlea.  Yes, hairs.  Those very things that Lord Himself says He sees and numbers.  I love that scripture even more now than I already did because I now understand that He isn't just talking about the hair on the top of your head, but even those teeny, suber-sensitive hairs that none of us sees in the cochlea - He sees them and He knows.

Right now, as we maneuver the medical and educational mazes, it seems that Anna is defined by her deafness.  Everyone wants to talk to us about Anna's delays.  Everyone is bothered by Anna's lack of formal communication.  Everyone is cautious and reserved in their prognoses.  Nobody wants to over-promise and under-deliver.  We keep hearing about how long it is going to take Anna to catch up and all the things she may never be able to do.

We look at Anna and we just see Anna - and she is a GEM!  Anna has absolutely the most outgoing, exuberant, expressive, engaging, sparkly personality of any child I have met -- hearing or deaf.  Anna never meets a stranger.  Anna is determined to make herself liked and understood.  Anna navigates in a hearing world in a way that leaves people feeling better about life. Anna makes people smile.

What would we change about Anna?  Nothing.  Anna is unique, and we love her just the way she is.  Still, when someone says to you, "I have something that will benefit your child," you listen.  So, when we were made aware of the possiblity of cochlear implantation, we listened.  We researched.  We struggled.  We read about the views of some in the Deaf community as well as the opinions of educators, physicians, audiologists and others.  We talked to other parents who have chosen to implant (and not implant) their children.  We have watched videos, studied morbidity rates and looked at deaf schools from Washington, DC, to Maryland, to Austin. 

In the end, we think that if there is any chance for Anna to be aided by way of a cochlear implant, we owe it to Anna to try it.  If we wait until Anna is old enough to choose for herself, we will have missed the window of opportunity for Anna to fully comprehend spoken language.  Actually, we may have missed that window anyway since Anna is already 5, but we will certainly miss it if we wait even longer. I can't describe how difficult this decision is.  We love who Anna is, and we are very concerned that, by implanting Anna, we will somehow introduce noise and grief and other nuisances that will change Anna's personality.  What if Anna could actually learn to hear with an implant?   What if?  Who are we to take the option away from Anna?  By not deciding, we decide.

And so....we decided.  If Anna turns out to be a viable candidate for implantation, we will pursue the implant.  We have had our first round of testing and are now on to our second round.  Anna will have her MRI under anesthesia on Friday.  This decision is not lightly made.  It is in no way a rejection of who Anna is as a perfectly created deaf person.  It's a celebration of who Anna could be as a deaf person given the miracle of hearing.

A cochlear implant will NOT make Anna the same as a hearing child.  It is not a matter of pushing a magic button, and -poof!- Anna hears.  Anna will have to learn, just like a baby.  Her age complicates things since we have already missed the prime age for implantation.  Since most language acquisition happens between 0-4, children implanted younger tend to do much better.  For children Anna's age, the outcome is more guarded.  We may do everything right, and Anna still not benefit.  Or,  Anna could take off as far as language development. Anna will require a lot of therapy involved.  Anna will have to have intensive training in how to listen and how to decipher and interpret sound.  She may never be able to carry on a spoken conversation, but at the very least, she should be able to hear a fire alarm, hear a train horn, or hear a window break.  In our view, these are safety measures that will give Anna a sense of security.  Maybe, just maybe, Anna will get a greater benefit.  Maybe she will be able to hear her name and turn her head.  Maybe she will even be able to speak someday.

For us, Anna hearing and speaking is not the be-all, end-all.  We want Anna to be able to communicate -- to express ideas, to make her needs known, to understand how much she is valued and treasured.  We still plan to sign with Anna no matter what.

Please pray.  Pray for Anna.  Pray for all of us.  Pray for the Father's will to be done here on earth, in Anna's life and in Anna's body, and in our lives and our emotions, just as His will is done in Heaven.  Pray for Anna's doctors and therapists and teachers.  Just pray.