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Tuesday, September 23, 2014

Her hearing device broke today... then THIS happened...

First, this happened...
Asking for prayer. Katie came home from school today and her loaner BAHA hearing device seems to be no longer working at all. (I've changed the battery, put it in rice), but it seems to have seen it's last day--it's lasted years and helped several children all over the U.S. but I think it's done. I am devastated. Our case for insurance approval for her own devices has been pending for months. I called both our audiologist and the Oticon hearing device company's insurance liaison and both will try to advocate our case to move insurance along to a decision. It could be months before she has a hearing device again. I'm SO incredibly thankful for the 3 months that she's been able to hear us, the gift of that connection and auditory understanding/ language acquisition. I'm just in tears that it will be awhile until she can again. Prayers please that our case will move quickly and not need appeals. In the meantime-- signing as always, and Mama shouting very loudly in her ears.  #weepymama
 THEN THIS HAPPENED...
So, I should start by saying, when Katie's loaner BAHA hearing device wouldn't work today, I expected that meant she wouldn't be able to hear for a couple more months, until she gets her own approved by insurance (a long process). I cried for hours. I posted here for prayer. Then a fellow adoptive mom with a beautiful sweetie from China, Eva, born with the same condition as Katie wrote to me, that she understood the frustration... Eva had only had a BAHA for a couple days and then it was lost at an airport. Can you imagine? Your daughter could hear for only a few days and then nothing.  I told her I'd pray for Eva and she prayed for Katie... Well, then a wonderful woman I had never met messaged me and OFFERED me another loaner for Katie! I wasn't expecting that AT ALL. Katie was going to get a device! I cried and thanked her, BUT then the Lord spoke to my heart clearly. We were given the amazing gift of 3 months of Katie hearing. Eva only had a few days of hearing. I asked this kind woman if she would consider giving the device to Eva instead, who needed it more than Katie. Now Eva would get a device, but not Katie, for quite awhile. I knew it was the right decision. Within a couple minutes of me making that decision to decline the loaner, ANOTHER wonderful woman from our support group wrote to me and offered to send a loaner from the UK to Katie tomorrow. BOOM! A hearing device for Eva AND a hearing device for Katie. If Katie's device hadn't have broken today, it would have been months before Eva would get to hear at all. We don't always get to know the purpose for things, but today, the Lord unfolded it beautifully. TWO SUPER THANKFUL mamas, TWO SUPER GENEROUS women who are loaning our babies' their devices, and TWO MIRACLE GIRLS who will get to hear in several days. Tears all around for God's provision. He has always gone above and beyond for our family and continues to inspire others to give in such astounding ways. As I often am, I'm humbled by His goodness. Again, we are praising God as a family and singing, "He is able, more than able, to accomplish what concerns me today. He is able, more than able, to handle anything that comes my way. He is able, more than able, to do much more than I could ever dream. And He is able, more than able, to make me who He wants me to be." #trulyblessed 


Tuesday, September 2, 2014

The Meaning of "Xiatong"

It's been nearly two months since I last blogged-- we've been BUSY having fun, bonding, and Katie has grown developmentally greatly in that time. It's almost been FOUR MONTHS since Gotcha Day and I've felt this blogpost coming for a long time, bubbling up in my heart.

Tomorrow is a BIG day, a HUGE day, and I am SOOOO not ready for it. All summer, Katie had several evaluations by the school district: occupational, physical, social, and they used her medical test from June as well to come up with an educational plan for her. Last week, we finally had her IEP meeting (Individualized Education Plan) at Lake Drive School for the Deaf in Mountain Lakes...

This is my synopsis from that evening: "We're still processing all the good news... They are supplying Kate with MUCH MORE--"abundantly more than all we could ask or imagine" for her education and interventions. First of all, I want to reiterate that when we were considering WHICH special need to narrow our search down to as we were in the initial stages of adoption, and considering all the precious children waiting for families, we had heard the praises of Lake Drive School for Deaf in Mountain Lakes as one of the top deaf schools in NJ. We decided that, given that resource, we could best provide a great future for a deaf child, and started considering the deaf waiting children. Today was a wonderful affirmation of that decision. They are welcoming Katie into the deaf school's full day preschool (8:45am-2:45pm), 5 days a week (this was a surprise to us- we thought it was only mornings). The classroom is amazing and uses both speech and sign language, and has 4 teachers and 9 students. Transportation is provided, as well as daily speech therapy and occupational therapy there. The HUGEST part... I LOVE their staff. The administration advocated that Katie needs an Individual Para all day for her. Did you hear me? I nearly fainted... I didn't even dream they would provide one. That's a ONE-on-ONE person assigned to only Katie all day, signing and speaking to her, engaging her into every activity, and helping her adjust to a classroom setting. Doug and I are speechless. That's more attention than I can even provide her, all day long. I am trying to process it all-- I feel like I'll barely see my baby but she needs this and I believe that it's so good for her. She starts next Wednesday. We are absolutely THRILLED for what this means for her education, for her foundational skills, and for her future success. We are so very thankful to the Lord for allowing us to live in a country that can provide this for our child. AND I can't help but think of the moment I explained to her orphanage staff that day in May that she would have an excellent education. They were incredulous that one day she could have a job. The sky's the limit for Katie Grace. Thank you, Lord!"

Wow... she starts tomorrow morning. I'm overcome with emotion. Do you know what Katie's Chinese name means... She's "Katie Grace Xiatong Becker". Xiatong means "Summer Pathway" or "Summer Journey" in Mandarin... WHAT A JOURNEY this summer has been. I thought it would be- I expected it would be a journey for HER. What I did NOT expect, I just truly could not have imagined or prepared myself for-- what an incredible journey it's been for ME. Loving Katie is one of the easiest and hardest things at times I've ever done. Motherhood is hard for every mother. But special needs children's moms know-- it can be a particularly exhausting and trying experience for us. I have to work hard at "entering Katie's world", to cross over the walls that Neglect built, and meet her where she's at, and invite her into our world- a world that she has come SO much further in understanding this summer. I can promise you- this summer- mothering her has brought me to the best AND worst parts of me.

I've reflected on this summer of fourteen hours a day FULL of Katie. This is how has Katie ALREADY forever changed my heart:
1. I give grace and compassion to all mothers more freely now. Are you having a day that you are "losing your cool"? Been there, done that, more times than ever this summer-- especially during one of Katie's brutal insomnia episodes- once to twice a week she is wide awake from 3:00-6:30am. Yes, A.M. I'm not a nice mommy sometimes at that hour- and there were times I felt I was being pushed to the edge of my sanity and woke up Doug to take over Katie-watching-duty. I do not judge a mom who starts losing her patience in public, instead I pray that she'll get the encouragement and rest she needs. There's no room for judgement in a very humbled heart.
Katie sleeping in late after one of her insomnia nights-- she'll sleep through anything- even me vacuuming the room!

2. I notice opportunities to cuddle and draw Katie in. She comes to me more and more for companionship, but I usually still initiate. Only through hours daily of me attempting to engage with her, she is now made HUGE strides in the past few months in eye contact and now is even watching me sign. She understands now that I can actually communicate some useful information to her. She usually needs some prompting for signing, and regularly only signs about ten signs, but she is definitely understanding more verbal commands as well. She's a different child than four months ago.
Two of our eye contact sessions:


Another milestone for her: 
(While it may be a sad picture, I promise you, it's GOOD in Katie's journey to attachment. Daddy came home from work and decided to run a quick errand. Cara got her shoes on and left with him. Katie brought me her shoes and I said no, since they had just left (K watched out the window)... And then she came and laid down next to her shoes and cried. Why is this good? Because she CARES! She wants to be a part of us. I promise, this is a good sign. We've got two Daddy's girls.)

3. I don't take time with Doug for granted. We are almost never alone and I love the chance to invest in our marriage and enjoy his company.

My wonderful date to friends' wedding-- we had such a great time!

4. I really understand, more than ever before, the hymn: "I need Thee, Oh, I need Thee, every hour I need Thee."

While I know that I'm always still Katie's mommy, it's very hard for me to wrap my mind around tomorrow. She'll be gone until 3pm everyday. Our home will never have felt so empty. (Cara is starting preschool 3 mornings a week but I know she'll still miss Katie terribly). I seriously feel like I'm sending my 4 month old off to full-day kindergarten. I KNOW it will be so good for her and I know it will be positive for me too, as I will be more rested and able to have energy to parent her better each evening. It's just such a big transition for my role in her day.
All ready for school in their new backpacks!


Would you please pray for her tomorrow as she has her first day? I know she won't understand that we are coming back for her (I'm driving the first few days, before they arrange transportation). School feels like a institutional setting and Katie may think I'm not coming back. I'm making a photo-sequencing album for her today to show her pictures of her at home, her in the preschool classroom, her with Miss Franklin (we took those pictures last week), and then her home with us again.


...now to prepare myself for tomorrow. Y'all, there's no way around it-- I'm going to be a wreck. This little 26 pound girl has turned our world upside down and I wouldn't have it any other way. "Katie" means "pure". Katie Grace Xiatong Becker... I have needed "pure grace" to make it through our "summer journey" but I have GREAT HOPE that this school year you will start to grow up and blossom more and more. You'll always be my baby. I love you so much.
Lord, help me "let go" and let You use this educational opportunity to brighten Katie's future. Thank You for using her this summer to change me. It's not been an easy journey at all, but

she's 
so 
worth 
it.




Monday, July 7, 2014

Adjustment-- what's a parent for, anyway?

People ask us all the time: how is Katie adjusting? Answer: very well, all things considered. Most days. Some days are rough though. The roughest days are when I have to tell Katie "no" too many times in one day. We always joke... that in her head she thinks:

"I have the meanest parents in the world. 
They don't let me play with sharp knives, 
try to open childproof medicine containers (long story, she climbed to it), 
turn the knobs on the stove, steal other people's food at a restaurant, 
or run into the street. They are the 
meanest parents EVER." 

(You HAVE to laugh sometimes or you'll cry). Katie can be a handful, an adorable, quirky handful. She also fights HARD against me, against me telling her what to do, but there is a good reason why! You see, Katie is just not used to having parents. She's not used to anyone having an opinion about what she does. She's not even used to anyone NOTICING HER-- for four long years! Think what a shift it is for this persistent blond woman to helicopter parent you (especially in public so you won't run off), not allow you to throw food on the floor, ask you to please drink more than 4 oz. of liquid a day, not allow you to run into traffic or drink toilet water, and scoop you up to cuddle when you'd rather just play alone. Fourteen hours a day of a mommy, when you really never had one. OH! And this crazy blond mommy wants you to LOOK at her and play with her and socialize. (You can see how much I must frustrate her at times). There are truly days that I crawl into bed so discouraged that she doesn't understand that Mommy loves her. I try very hard to invest some time daily into engaging with her in ways SHE enjoys: puzzles, music, singing, playing in water, blocks, sand and shovels. This is a huge adjustment for her and I choose to have grace with her as she explores, tests boundaries, and figures out this weird thing called "family". 
As for the devastating effects of her institutional childhood and years of neglect: her lack of eye contact, and bigger interest in objects more than people remain. She IS slowly blossoming, each day, and realizing that SOCIAL RELATIONSHIPS ARE VALUABLE. Especially with her hearing device on, she looks in my eyes more often, and comes to me for help and even occasionally for companionship. This part will be a LONG road. The more and more she's with us, the more she'll break out of her inward-seeking tendencies and her thick anti-social shell. There ARE days that I desperately want to speed things up and just have her want to interact with me. But I can't change her. I can't force her. She's blossoming on her own timeline, not mine. 

Do you ever get the feeling the Lord's really trying to get a Truth into your thick head? This verse is following me around everywhere, in my most discouraging moments, He reminds me. He HAS a future and a hope for Katie. When we have a hard day, I cry out to The Lord to encourage me, remind me of HIS sufficiency to miraculously transform this precious child. He keeps reminding me. "He who calls you is faithful, and He will do it" 1 Thessalonians 5:24. (This chapter was written by my dear Cindy (Lucinda Secrest McDowell) about her journey with adopting her wonderful special needs son.) I can say this, God's transforming Katie everyday, AND He's transforming my heart, He IS faithful.

Here's some of her most joyful moments in the past 3 weeks:


first sprinkler

first time to see the ocean

first amusement park ride

first time loving the ocean waves (Ocean City, NJ)

She loves Sister cuddles!

first Morning Music Time when she could HEAR

America's Sweethearts on the 4th of July

first fireworks: she could SEE and HEAR them...

and MY FAVORITE: TODAY! She was so terrified of her swimming vest and arm rings but when she actually started swimming around with us at Mt. Hope Pond, she was so, so happy!

How we love our sweet, sweet baby Kate!

When I get discouraged, I HAVE to remember, Nothing is too difficult for the King of Kings. It's my ability to trust Him that falters, not His plan for her all along. I have to remember Who made her, Who loved her before we did, and Who understands her fully: her painful past, her present, and her mysterious future. He's got the whole world in His hands, including Katie Grace Xiatong Becker.


What would my blog post be without including a song that really speaks to me?
THIS ONE, "I Will Lift My Eyes": by Bebo Norman, which refers to Psalm 121, one of my FAVORITE Psalms...

God, my God, I cry out
Your beloved needs You now
God be near, calm my fear
And take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can't climb
I will lift my eyes to the calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes
To You
God my God, let mercy sing
A melody over me
And God right here, all I bring
Is all of me
Your kindness is what pulls me up
And Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can't climb
I will lift my eyes to the calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes
To You
'Cause You are and You were and You will be forever
The loving I need to save me
'Cause You fashion the earth and You hold it together God
So hold me now
I will lift my eyes to the Maker
Of the mountains I can't climb
I will lift my eyes to the calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes
To You
I will lift my eyes, lift my eyes
To You
God, my God, I cry out
Your beloved needs You now






Hearing Update after her Brainstem study

Update: Last Monday (6/30/14), we had Katie's Sedated Auditory Brainstem Response study. She went under anesthesia (which was upsetting for me and her!)...

BEFORE ABR


 AFTER ABR (I cried when I saw her like this!)


  ...We had waited for nearly 2 hours as they tested her brain's responses to sound without any hearing device AS WELL AS with a bone conduction device. the results were fantastic.
Without any hearing devices, Kate's hearing loss is in the moderately-severe range, with the quietest sound she can hear being about 65-75 decibels (ex: very loud speech, dog barking, lawn mower)...

The HUGE NEWS was this: when they tested Katie's hearing WITH a bone conduction hearing device (similar to the one she is borrowing from a online friend).... Katie's hearing was NORMAL!!!! 

WHAT DOES THAT MEAN?!?!?
It means that at least one of Katie's cochlea (her inner ears) work perfectly. It might be both of her ears that are working or one that's doing the job for both (we will eventually do imaging to see her ears' anatomy). It is only the absence of ear canals that block the sound waves from getting to her perfect inner ear(s). The bone conduction hearing device solves that problem! YAY!!!
Katie was SO ready to get out of the hospital!

'Mama and Baba, why are we still in here? Let's bust out of this lame joint!' ;) Cutest patient ever!

This Thursday, we went to the ENT and audiologist and are setting up our plan to order two bone conduction devices (on a soft headband for now). We are THRILLED that Katie has a great prognosis for hearing! :)



Tuesday, June 24, 2014

Katie HEARING for the first time--- video!

Katie is HEARING clearly for the first time in her life, at age 4 1/2, here's the video. I said her name and she looked right in my eyes (we rarely get eye contact). I sang and she heard me. She cried a bit, because as you can imagine, experiencing a new sense is sensory overload and pretty overwhelming (it's like us experiencing an overwhelming, bright strobe light in our eyes for the first time). She actually turned it from "1" volume to "0" (off) at about 2:00 when she touched it, so she didn't even hear the cover of a cover of Allison Krauss singing Baby Mine at the end of the video, lol... we had her listen to the real one later... will upload another video later when she's laughing at the feedback sound! The BAHA (hearing device), which is conducting sound via bone, works on a soft headband by transforming sound into a strong vibration on her skull, then conducting it through her skull to the tiny bones in her functioning inner ear, bypassing the absent ear canal. Make sense? She's only wearing one and will eventually wear two, this is a loaner.  We are so excited for how this will transform the way Katie engages with her environment and starts to interact with us more!

https://www.facebook.com/photo.php?v=10154273407975693&l=3831757604944926590

A big day for Katie Grace! Now with her hearing device on, she mimics when I sing a note! :) So darling!




I know it's KATIE who got access to one of her senses today, but I'm also just so overwhelmed--in a good way. It's so strange for me to process as her mama, she can HEAR us. It's so hard to wrap my brain around. She went to take her sister's juice and I said, "no, no, no" from across the room, without a visual cue and she turned around immediately, looking for where the sound was coming from. Later I said, "Mama, mama!" to her (from 3 feet away) and she said, "Mama!" back to me. I sang "You Are My Sunshine" to her and I got THIRTY seconds of amazing eye contact. That's just unheard of for Kate. (Pun intended). I haven't happy-cried this much since Gotcha Day. Sound is breaking open Katie's shell, and helping her want to engage with us. Thank you, Jesus!

Will update more sometime when I get a chance! :)




Saturday, June 7, 2014

She HEARS! and other exciting news!

She HEARS! and other exciting news!

First, a brief letter to our blog readers: 
If you are reading this, you are most likely more than just curious or bored, but are a Katie-fan, one of her cheerleaders, who want to see her succeed in life. For that, I really cannot thank you enough. We are wild about our Kate. But we are so touched that so many others are, as well. Thank you for caring about her and embracing her in your hearts, and wishing her well, and praying for her. When I see some of you at the park, I literally see a LOVE for Katie in your eyes, when you look at her (Thinking of you, Helene, Dondrea, Rachel, Tara, Cristin, Christina... too many of you to mention). Do you know how that makes a mama feel? In an often cold and disappointing world, it is truly a blessing to be loved and embraced by your community (locally and globally). 
THANK YOU!
Love, Me
So for those of you who only read my blog, and aren't my Facebook contacts, I apologize because I've kept you in the dark for a few weeks. A couple hours after my last blog post, on Memorial Day, THIS STORY happened:
---
She HEARS! And just like, that, as clear as a bell, like many other confirmations we've had that she can hear a tiny bit (re-acting to the vacuum, loud music, and alarms without visual cues and singing tunes back to me that I had loudly sung in her tiny ears) Katie impresses all of us AGAIN! She was leaning back in her chair dangerously, and I went up to her and said loudly in her ear, "No, no, no, Katie." Mom, Doug and I did a double take as she sat up defiantly, tilted her chair back again and as clear as a bell chanted in her own voice, "NO, NO, NO", "NO, NO, NO", "NO, NO, NO!" with a huge grin on her face... I've never been so excited to hear a child say "No" to me!!!! This means, most likely, that she is in the estimated 85% camp of children with her condition of Bilateral Microtia and Atresia. She most likely has intact inner ears and has only conductive hearing loss because of the cartilage and tissue blocking sound from travelling to her inner ear, instead of sensorineural hearing loss (non-functioning or damaged inner ear). This is fabulous news, once confirmed by a doctor soon, because it means BAHAs (Bone Anchored Hearing Aids) are all she may need to hear, instead of the much more costly and complicated cochlear implants. (That's my quick explanation). I love her the same either way but I'm thrilled for what this means for her! 
---
AHH!!! We were so excited! 





We started singing to her, loudly in her ear, at night more and more, too. She is starting to focus on my signing as well. The other night, I gave Katie her nightly baby massage and sang her 3 usual songs in her ear. She always smiles and laughs, but at "Jesus Paid it All", she pulled my hands around her shoulders, in front of her face, and waited, motioning for me to sign the song for her. She loves the signs for "Sin had left a crimson stain, He washed it white as snow." The "snow" ASL sign delights her.

When we sing, she listens carefully and often sings the tune back to us. Doug even started singing to her too! Doug had never sung to Katie before and I encouraged him to. After Cara had gone to bed, he sang "Jesus Loves You" in Katie's left ear and at each chorus, I sang simultaneously in her right ear. It was her first "surround-sound" experience.  She was in heaven, she grabbed Daddy by his face and drew him in to sing again, and pulled me close too. There's nothing quite like the experience of her wrapping her little arm around you and "singing" along to the tune. I delighted in sharing that experience with Doug. It's seriously moments like these in our marriage that take our breath away. Our time with Katie and Cara in the evening, bonding with them is really the highlight of our day. 

Here she is focusing on our singing, and drawing us closer!

She just loves her nightly surround sound duet!


And now for a VERY exciting announcement!!! 

Due to the generosity of a new friend, Sonja, who also has a sweet son adopted from China with the same condition as Katie, we get to borrow a BAHA (the expensive hearing device she needs) starting NEXT WEEK, until she gets one of her own in a few months. 
We are not positive yet if our insurance will cover Katie's BAHAs or not, so we may need to do another mini-fundraiser, to cover part of it. (Nothing at all compared to the adoption process fees!)
The thought that my baby is about to be able to hear me way more clearly, and start more social engagement, in a matter of days from now, makes me cry! I just can't believe it's so close!!!! Be watching for a video in about a week, folks!!!! 



It may not look like much to anyone else, but for this family, it's a miracle. Katie is actually staying on the bed for reading time and letting me sign a book to both of them. AND she's paying attention. Triple miracle.



Tonight she pulled her lounging chair to the best patch of setting sun in the living room and is cuddling with her beloved blocks-- (I love her quirkiness!)... (and yes, she's in just her diaper, after an unfortunate pudding disaster!)  ;)

Next week is also Katie's educational meeting and we are anxious to get the ball rolling with finding all the best resources for her. I still have ALOT of phone time to continue to figure out if her medical and special hearing tests in July will be covered with our insurance. Please pray for me as I continue to navigate the murky and perilous waters of our insurance policy! I'm determined, but often spend an hour a day on the phone, setting up appointments and inquiring about coverage for tests, etc. 

We are thankful to the Lord for all the WONDERFUL things He is doing in Katie's life! She is blossoming more and more and more! 

Thank you again, from the bottom of this mama's heart,  for cheering for her! 




Wednesday, June 4, 2014

A Look Back! One Month since Gotcha! Video!

A CELEBRATION of our one month so far with our sweet baby!!! :)
How we adore her!!!

A LOOK BACK! I've been working on a celebration video of our Katie, and singing the second song in the video all month-- I've been saving it up for this! Today is ONE MONTH since we met our baby girl, and she changed our lives forever! Oh, Katie Grace, how our hearts BURST with love for you! You are going to be a world-changer! 
Video:
https://www.youtube.com/watch?v=kUi1ZElZ1w0


I have SOOO much more to share, but it's bedtime! I will soon! :) We are doing GREAT! xoxo