Jack and the Hearing Saga

When we first saw Jack's file over a year ago, it was noted that he had severe/moderate hearing loss.  At the time we had two thoughts concerning this.  First, it was probably conductive loss related to his cleft palate.  If so, a good set of tubes might go a long way in helping him hear. (As one of Kate's doctors told me once, it is hard to hear with tapioca pudding in your ears.)  Second, even if the loss is permanent we have lots of resources to help a child with partial hearing loss.

So, we started the process and honestly did not give a lot more thought to his hearing loss. It was one of those We Will Cross That Bridge When We Come To It kinds of things.

Fast forward to last April when we met him. We had some indication that there might be loss.  For example, he is really loud.  No really. He is loud. Also, (unlike Kate, who also had moderate hearing loss) he had no connection with his Chinese name, even when spoken by people at his orphanage.  Was it because he couldn't hear or was it that they just never called him by that name?

Within a few days though, we noticed he was easily turning his head towards all sorts of sounds, and he was responding to the name Jack. This confirmed - for us anyway - that his loss was moderate at worst, not severe.

Once home our regular audiologist (#1) confirmed this for us again through a series of tests.  However, everyone and their mama thought we still needed to get a sedated ABR hearing test to further nail down the type and severity of the loss.

Remember all of the rigamaroll I went through to get the ABR?  Blech.

So in August, after his tubes were placed but before Dr. L repaired his palate, an audiologist (#2) came in and performed an ABR.  I was so confident that his hearing would come back with minor or no loss that I didn't give it a lot of thought.

Except that isn't what the report said.  The audiologist (#2) (who I had never met before) told me that Jack had moderate/severe sensori-neural loss and that he needed hearing aids immediately.  That he wasn't hearing well enough that he would ever learn to speak without aids.  Honestly, it was a punch in the gut.  I cried for quite a while before I felt ready to go back into the waiting room.  In my head I knew that this was a possibility, and I thought I was prepared for it, but the reality was a lot more painful.

Tim and I together decided we weren't ready to share this news.  Keep in mind that we were still dealing with the fact that our 2 year old was in surgery.  And for my part, I knew that I needed to get to a point where I wouldn't cry every time it was mentioned.  The last thing Jack (or I) needed was pity.  We needed resources and strength.  Jack would need the confidence to know that hearing aids would not slow him down or stop him from anything he wanted to accomplish in life.  It had to be no big deal.  And honestly I wasn't there yet.

We went in to see our regular audiologist (#1) a couple of weeks later.  Immediately, she questioned these results.  She questioned the type and severity, maintaining that Jack's loss was conductive and minimal, and she tested him again.  Over the course of the next few months she repeated those tests more times than I could count.  I carried the results to pediatricians and ENTS, looking for answers to these conflicting reports.

In the meantime, Jack was starting to talk.  He said the word ball.  Daddy. Wah (water). And one night I was putting him to bed.  It was pitch black in the room, and we were whispering to each other. He would say, "Mama," and I would say, "Jack."  Back and forth we went. And then I said, "Time to sleep, Jack." And he rolled over and went to sleep.

I know some of you are marveling that he listened to me, but I was marveling that he heard me! I whispered!

I went in to see audiologist #1 and told her, and she cried. I love that woman.

Then last month Dr. T, the international adoption doc, suggested we see her friend who is an audiologist (#3).   I had been considering a third opinion from the place this woman works anyway, so I was game.  They got us right in, and audiologist #3 did a series of tests and then says, "Jack has normal or near-normal hearing.  He does not need aids." And I cried again. I asked, "How could this other, supposedly objective test have been so wrong?"  And she explained to me how the instruments can sometimes get covered in the blood and other fluids present in a surgical situation, thereby making them inaccurate.  It wasn't anyone's fault. It just happened.

And so here I am, considering all of this.  I am extremely grateful that his hearing is fine, not only because I am a normal parent who wants their child to have normal hearing (even though I was perfectly willing and able to parent a child with hearing loss), but also because now we only have to have hearing checks a couple times a year. Which is really great, considering my recent complaints about frequent doctor appointments.

But through this process I have also thought a lot about what it would mean to have a child with something the rest of the world considers a disability.  I have given a lot of thought to parents who want their child to not be seen as a deaf child, but a child who happens to be deaf.  Do you see the distinction?  They don't want the emphasis to be on the deafness, but rather on a child who has infinite possibilities for success in his life.

This is another post without a neat bow.  I am thankful for Jack's hearing. I have twice been given the gift of a child whose hearing loss was restored.  (And twice the gift of children who have no hearing loss but severe selective hearing loss, iykwim.) I guess what I am saying is that maybe when I hear a child has a diagnosis, I will think twice before saying, "I am sorry."  Not that there isn't a time and place for I am sorry.  There is.  I just know that it wasn't something I wanted to hear. I did not want anyone pitying my son, who is one of the smartest kids I have ever met. (He is starting to recognize letters.  He is 2 and has only heard the English language for the past 8 months, 4 of which his ears were full of tapioca pudding.)  He is going to do amazing things, and it has nothing to do with how well he hears.  Next time I will be more likely to look past whatever the child has, and see the child's potential.  That is what is best for the child.  And for his mom.