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.

Confessions of a Bad Blogger

Since I have been overwhelmed with life in the past year lately, I may have passed up a few bloggable moments.  But there are a few things I would never forget to tell you from 2012.

1. I would never forget to mention that Will learned to ride his bike this past spring.

2.  And I am sure that I remembered to post photographical evidence that we actually did spend a week at the beach with Tim's family. No?

 3. Likewise, I would never fail to blog if Kate learned to read.

4. If Ben had continued to write funny comic strips to amuse his teacher and me, I would post every single one.

5.  I am sure that if Will had visited the local newspaper office and become inspired to write his own newspaper, complete with cover story, sports section, interviews, comics, and puzzles, of course I would have told you about it!

6. I got a new camera just before Thanksgiving, but if a tall, skinny stranger tried to eat my youngest while I was messing with the settings, I am sure I would have remembered and posted a photo.

7.  I always remember to post the Annual Cousins-on-the-Stairs pic, especially if it is Jack's first one.

8. And if Kate ever won an award at school for never giving up or quitting, I would have taken the time to blog about it.

9. We didn't do anything fun like decorate gingerbread houses. And Jack-Man did not eat his house before it ever got decorated.  (Thanks again, Lilly!)

10. And of course, Jack did not fall on his face shortly before said gingerbread adventure, getting a large contusion on his forehead which is still visible more than two weeks later. 


I am also sure that the astute readers among you noticed that I still failed to mention our Christmas celebrations, but maybe I will get to that before the spring thaw. Or maybe I won't. Who knows what you will get from this bad blogger. 

And Now for Will and Kate's Christmas Song

Will and Kate's choir opened the Christmas program last week.  They sang four songs, and Will and Kate both had solos in the last song.

However, Will ended up stealing the show.

He started out with the wrong words, and, well, he messed up, said, "Oh, Poop," and the whole congregation roared with laughter.  Maybe someday you will see it on tv:)


Thankfully he recovered magnificently, and he and his sister sang their hearts out.  

We are very proud of both of them and how hard they worked to learn their song.  And we can't wait until next year's performance!

Ben's Christmas Play

Ben was thrilled, and maybe a little bit fearful, when he was cast in one of the lead roles of this year's church Christmas play.  He did a fantastic job, and we are super proud of him.  Grandparents, here you go:

Guess who learned to suck through a straw today?

Apparently Strawberries Wild from Jamba Juice is a great motivator.  Either that or the desire to do every single thing that his brothers and sister do.  Take your pick.

Yay, Jack!

Happy Birthday Kate (and Happy Kate NaNa Day too)

Many of you who hang out here already know this, but October is a big month for Kate.  Her birthday, date of abandonment, Kate NaNa Day, and her adoption day all fall within 12 days of each other.  And for those of you schooled in adoption issues, you know that means lots of different emotions crammed into a very small window.  This topic could probably be a post all of its own, but suffice it to say that she experiences excitement, grief, joy, and deep introspection - often all within about an hour.  Those of you who have witnessed a child grieve, you know they express it in many ways.  Kate is no exception. Her heart aches at the thought that she will never meet her first parents or see her foster mother again. She tells me that she misses China and wants to visit again soon.  Her feelings are valid, because it is sad to lose those things. Yet she still loves us deeply, despite (or perhaps because of) her grief and loss.  Adoption is complicated and messy and beautiful and redeeming all rolled into one big ball.  For Kate it just all comes at the same time. 

Anyway, the first of these big days comes in mid-October, when we celebrate Kate NaNa Day.  This was the four year anniversary of when we met our girl.  In our family it is a tradition that we go out to eat Chinese food, and then Tim and I give her a small gift that we bought for her in China.  This year it was a purple change purse at P.F. Chang's.

 

Ten days later her birthday (which also happens to be her date of citizenship) rolled around, and she wanted to celebrate with pizza and video games.  It was a good night for prizes. 

And last but not least, we had her birthday party the following weekend. For her party, she requested chocolate cake and Chinese dumplings.  We make the dumplings, or jiaozi, from scratch.  So with about 25 people at the party, that was a lot of dumplings.  Chinese families often make these together during celebrations, so I decided to insert some Chinese tradition into the party. Most people who attended learned to make them. I had the filling mixed and ready, and the guests helped roll, fill, crimp, and fry the dumplings. It was a huge undertaking for everyone, but it was a lot of fun and delicious.  They were a big hit.

I also managed to make my first chocolate cake from scratch.  Our family tries to buy only fair trade chocolate, but it was a challenge to find a good scratch recipe.  My aunt ended up mailing me her favorite one for a chocolate cinnamon cake, which was a big hit.  I love the icing so much it makes me want to cry.

As I was putting her to bed the night of the party, Kate told me, "That was my best party day I ever had."  I was glad, and asked her what she liked about it.  "I got a Hello Kitty alarm clock, Daddy set off firecrackers, and I got to eat my dumplings."  Add a lot of friends and family to that equation, and it really was a wonderful day.

Kate,
I love you sweet girl, and I love being your mama.  I am glad you have a tender heart and process everything deeply. It is such a wonderful part of who you are and how you care about other people.  You are a joy to parent, and I can't wait to see all of the amazing things you will do with your life.  And if you really do move back to China when you are a grown up, I will still come and visit you - probably more than you like:)

Overwhelmed.

If I had to pick one word to describe the last four weeks (yep, almost a month during which I haven't blogged), it would be overwhelming. 

While I sometimes like to write with lightheartedness or sarcasm, other times I feel that vulnerability and honesty are the better way.  October (and September, if I am being truthful) calls for that. 

Overwhelming.

I am overwhelmed with the number of appointments. My kids and/or I have had appointments with plastic surgeons, ophthalmologists, optometrists, ENTs, audiologists, orthodontists, dentists, speech and language pathologists, OB/GYNs, teachers, and pediatricians. I think we are currently averaging around five appointments a week.

I am overwhelmed with my kids activities.  Individually, it really isn't that much, but since there are four of them, it feels like more.  This fall the three big kids played soccer.  This winter Kate and Will are playing basketball.  Ben is on the academic team.  Ben and Kate want (and really should) take swimming lessons (and I am sure I will force Will to go as well).  Will and Kate also are in Bible Club at school.  Ben has an important role in the church Christmas play (which thankfully requires very little effort on my part), and Kate and Will are in the younger kids choir.  For now, I go to Sunday school with Jack to help him feel comfortable and safe, which we are thiiiisss close to achieving. 

I am overwhelmed by the pain of those that I love.  There are multiple people in my life who are hurting, and I want to fix everything for them.  I can't.  I can listen. I can hug.  I can pray. I can cook.  But I can't fix anything. (And those of you who are in that pain, please don't stop calling me.  I will worry about you whether you call me or not.  Talking to you actually helps. I mean it.)

I am overwhelmed by laundry, gardening, dirty floors, dirty toilets, disobedient children, screaming children (mostly one in particular), home repairs, phone calls, husbands who work around 50 hours a week, breakfasts, lunches, dinners, birthday parties, homework, children's church, political debates, and committee meetings.

But.

And this is a big but;)

I am also overwhelmed with the support I am getting from those I love.  My friends and family have been incredibly supportive of me and my family through all of the stuff I wrote about above.  They have let me vent, cry, and stomp my foot.  And then they make me laugh.  They cook for me and my children.  They help me make plans to make my life easier and talk through my options and give me their honest opinions.  Between my family, my college roommates, my book club, my fellow adoptive parents, and my friends who live thousands of miles away but still call to check on me on a regular basis, I am overwhelmed with support.

I am overwhelmed with joy spending time with my small group at church.  I, along with two other amazing women, work with teen girls each week.  These girls rock.  They are smart, funny, passionate, and compassionate, I can't believe I get to sit and laugh with them every week. 

I am overwhelmed with love.  Because even though we are crazy busy, my kids still take time to crawl up in my lap (or rather, my arms since I am not usually sitting) and tell me that they love me.  My husband still makes me feel beautiful and smart. And my God still reminds me Every. Single. Day. that He is in control of all of this.  Love. 

So, yes, I am overwhelmed.  With good, bad, and in between.  But it is all good.  And this too shall pass.  In about sixteen years.  I really have an amazing life.  If a tad overwhelming at the moment.