Tuesday, November 4, 2014

June 7th...1 year anniversary

I've been sitting on this post for 6 months. Some ideas need marination. Although you might not be ready to read it...I'm ready to share it.

May you appreciate the power of a dream...whether it's the dream you've always dreamed or the dream you've been given by a God who knows what you need more than you know yourself.

I dreamed a dream. That infamous song haunts me with images from the musical itself and of dreams that have been loved and lost. As the anniversary of Zoe's death hit me like a Mac truck, I found myself entranced with my very own version of the Les Mis classic, not too different than the original:

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving

It went something like this:

I dreamed a dream of pink tutus and ballet slippers...now the color pink makes me nauseas. 

I dreamed a dream of my sweet angel singing about her love for her Savior...now the only sound of her sweet voice is the one recording of Jesus Loves Me.

I dreamed a dream of snuggles and eskimo kisses...now I sit alone on the couch, my arms empty.

I dreamed a dream of healing where you would be a testimony of God's amazing power...now I'm forced to be the testimony of His sustaining grace.

I dreamed a dream where every new morning brought refreshing breath to fill my lungs...now every breath is taken with pain and suffering.

I dreamed a dream where I'd find you curled up in a cozy bed...now I only find your memory under a cold slab.

I dreamed a dream where I move through the day with purpose and conviction...now I float aimlessly, wondering as I wander.

I dreamed a dream of hair bows and frilly dresses....now they're packed away and hidden from view.

I dreamed a dream of sparkles and glitter...now the world seems dull and drab.

I dreamed a dream of tickles and giggles...now I feel guilty when I've had a good gut laugh. 

I dreamed a dream where hundreds, even thousands, of orphans would find their forever families after people heard your story...now I wonder if parents will be too afraid of the pain to answer the call.

I dreamed a dream of prom dresses, wedding dresses, maternity dresses...now I'm left with the image of your final wardrobe.

I dreamed a dream of long life...now I'm confronted with a very, very short life.

I dreamed a dream that we would have the privilege of sharing the story of God's miraculous healing power...now we carry the weight of sharing how God did heal Zoe by bring her to Himself in the ultimate healing.

I dreamed a dream that the best for Zoe would also be what we desired...now we know that the best thing for Zoe was to curl up in the arms of Christ, instead of the arms of her Mama.

Yet, as the words of that song haunt my mind, I'm stunned to find comfort in the midst of such sorrow...here's why: 

Hope is still high. Life is still worth living. Love will never die. And God will ALWAYS be forgiving. 

So. Very. Grateful.

I dreamed a dream that adoption would change our lives forever...that dream came true. 

Are you telling me that this isn't a Chinese to English thing...sounds about right.

Here we go, ol' buddy...a "final" installment in the health update for Big Z...until the next thing. :)

In the extensive testing done at the AEA, they also evaluated his speech. We assumed he was still transitioning from Chinese to English, and we also wondered if that missing 
"surround sound" was contributing to his struggle to communicate. Apparently, Zane also has a typical speech developmental delay...more new territory...and although it doesn't directly cause the speech intelligibility, the hearing issues just add to the existing delay. 

Here's the kicker: because he has good hearing in the one ear...and even though he's literally missing an EAR...he doesn't qualify for any assistance in school. Great. 

BUT he does qualify for speech assistance with the significant delay. Ironic, huh? SO...to date, we completed 2 different installments of speech therapy outside of school, and he now meets with the speech therapist during school hours. 

The therapists all claim that he's doing great...and then there's me, "Dude, consonants are our friends! Cozy up to a 'K', for the love!" But he acts like they're nuclear bombs and steers clear...especially on the end of words. Sigh.

If you thought (correctly) that we were big-time ENABLERS with the glasses, you should be in our house whenever he's rambling on and on...oh, and ON! Once you've been around Zane for a long time, you can understand him, for the most part...unless you're a certain dad who continually turns to me (and ANYONE else in the family) and says, "WHAT did he just say?!?" So while it's great that we can communicate with him, it doesn't really help him in the long run. Imagine his frustration at school and church when most people have no clue what he's saying. The only saving grace is that he's so OCD, he repeats the same things OVER and OVER. A better mother than I would continually remind him about all those pesky consonants...this mother tends to just roll around in all of his vowel-glory. Friends...it's this or the rubber room for me. 

Pretty sure this is one of those things that will seem insignificant in a year...right now, it's fairly consuming. So you can pray for my one-earred bandit and his battle against the consonant machine, and we will look forward to that day far down the road when our sweet boy can stand (preferably without jumping around...we're still working on that) and give a speech to the masses where the crowd can understand every word, and Zane can hear and see them at the same time. That'll be a big day...a day to highlight the awesomeness of a Creator that never abandons His children. A good reminder...no matter the outcome.

Saturday, November 1, 2014

How's about we throw a $4k piece of equipment on Wild Man's head and just watch what happens...yea

I seriously have no idea how we initially found ourselves placing a four THOUSAND dollar piece of equipment on a piece of ELASTIC and strapping it around ZANE'S head. 

We did WHAT?!?

I'll try to abbreviate the process. Roughly 6 months after the adoption, we realized that Zane's hearing was, indeed, faulty. Now you're probably thinking to yourself that ever-popular teen swag, "DUH!" Oh wait...maybe teenagers don't say that anymore...I'm so old, I wouldn't even know! Ah well...back to, "No joke, Sherlock!" I like it. 

Honestly, though, it wasn't obvious that Zane had no hearing in the "nub" ear. He could hear a pin drop, is the lightest sleeper that's ever pretended to sleep through a slight breeze, and never EVER misses anything. We were convinced that he could somehow hear through all that scar tissue and obstructions...

...until that infamous game of hide and seek. Suddenly it was all crystal clear. No matter where you were hiding, you could yell, "I'm upstairs!" (or wherever you weren't), and Big Z would run to that place. At one point, Bryce was hiding behind the recliner, and Zane was standing BESIDE it! Bryce would whistle, and Zane would go running in every random direction, insisting that he was heading towards Bryce. At first it was hilarious, but soon, we knew we had a problem...other than the obvious missing EAR! :)  He basically has no surround sound...no clue about sound location. We also wondered if this was a major factor in his speech issues...immediate family and close friends are the only people who can consistently understand his ramblings. (More details on that in the next post.)

We eventually began having some testing done with the local AEA...more new territory for this momma. They determined that his good ear had close to perfect hearing, but that no readings were notable on the right side. Thankfully, they discovered that he had next-to-perfect hearing on that side in the bone conduction tests. This means that he will eventually have the possibility of getting a permanent hearing aid implant, if we choose to pursue that. They said he's too young now and without the reconstructed ear, they'd have nowhere to place it. Of course, with such good hearing in the left ear, it would be a significant decision whether we'd want to do the implant anyway. It's kind of a big deal. Regardless, the ironic part is that since his hearing is so good on the one side, he doesn't qualify for any assistance in school. Awesome.

At the time of all these tests, we began to talk to the docs back up in Iowa City about hearing aids. As I mentioned last time, the poor kiddo already has glasses strapped to his head so we just weren't sure about the soft band hearing aid being the way to go. Once again, the U gets an A+ for quality service...and yes, we will hit almost every specialist on campus before this is over...but the hearing aid clinic staff is awesome. They indicated that the Baha may or may not help Z in his broken "sound system," but it was worth a try...a **GULP** $4k try. 

It was nothing short of comical the day I took Zane in to try out the Baha. Once the doc got the hearing aid ready to go, she strapped it on his head and turned it on. She asked if he could hear her from that ear...you should've seen the look on his face when he heard himself answer! It was hilarious. Then he started saying, "HELLO!" in every voice and accent you could imagine. He started saying everyone's names and acting all slap-happy. Think of the Seinfeld episode when Jerry and crew kept talking funny the entire time...probably hard to isolate...but if you could, you would've been in that moment inside the clinic that day. It was crazy...even for Zane. Take a moment, friends. It's hard to process...but hilarious.

After much anticipation, Zane began wearing these sci fi contraptions...like I said, the glasses band runs east to west...the hearing aid runs north to south. The mental picture your mind is just tossing around is only the tip of the iceberg! If he ever gets braces, the poor kid is gonna need a bodyguard. Of course, he's still just as cute as can be! As you can imagine, the hearing aid (and glasses) have been thrown, stepped on, abandoned, and hidden...and I'm sure we're still in the honeymoon phase! 

Adding insult to injury for Zane, the device also came with clip-on mic that we gave to Mrs. Franklin, his teacher at school. Going from zero hearing in that ear to amplified hearing isn't his favorite, but we are adjusting as needed. I may or may not find some morbid satisfaction in that. :/

Wanna know the hubs' favorite?!? The pre-certified purchase of said appliance is now being questioned by the insurance company. Shocker. 

OK friends...we're close to being caught up with Zane's health issues. I'm happy to move on and share with you all the things that have been going on this past summer...after one more update on his health...stay tuned!