Audism?

It took me so long to write to all of you about my son's hearing loss, but now that I've opened that gate, this space has become an outlet for me. I can organize my thoughts here and write through my concerns. And those are plenty, let me tell you. Most of you reading this right now are hearing adults, like myself. It's likely that the extent of your knowledge of hearing loss is confined to old age or your cousin's best friend's sister's daughter who wears hearing aids. My point is that I just didn't know much about the deaf, Deaf, or oral deaf communities until now. Did I lose you? I meant to a little. There's so much I didn't know and so much I'm still learning, but I thought I'd bring you along in what I'm learning, too. I'm in the middle of writing a new normal into our lives and I'm trying to figure out exactly what that is.

Before Baby A's diagnosis, I knew nothing of the controversy that exists in the deaf and hard-of-hearing community. I had heard of cochlear implants, but I really wasn't sure what they did in comparison to a hearing aid. It's quite different (google it). What I'm finding now is that there are passionate, opposing opinions on how to deal with children who cannot hear. With the technological miracle of the cochlear implant (CI), came much praise for the devices that could make deaf individuals hear! At the same time, a whole community of non-hearing folks were cringing. What would happen to their culture? Would sign language be a dying art? Honestly, it was something I had never thought of. The only reason it came to my attention was because I was searching online for information for my Baby A and I came across a picture that confused me. It read "Stop Audism" in a poster board like quality. Immediately, I searched my brain for a definition of audism. Couldn't find it. I used google instead ;) Audism is the notion that one is superior based on one's ability to hear. Whoa. It felt like I was wading into a swift current of waters I knew nothing about. I was about to be carried off to who knows where. I thought about it for a few minutes and then shut down the computer because I felt overwhelmed. I tried not to think about it and I was successful for awhile until his next appointment with a new audiologist who asked me point blank- "What are your goals for him? Have you thought about if you want him to hear?"

Initially, I told doctors and whoever else asked that my goal for him was to function normally among his peers. I know people shy away from that word "normal"but what I mean is that I want him to communicate as we do because that's what I know. That probably is a selfish view, but at the same time it is the hearing culture that I'm used to. To extend that, though, I see the value in learning to use sign. I've always thought it was something we should be teaching all along. It certainly helped my first born before he was able to talk. I knew that I wanted my second born to expand himself and learn ASL, too. As I say that, it's my hope that he won't ever need it because I want CI for him so badly, but rather that he will use it to, in some way, identify with this culture that I might never be a part of or help others who started off much like he has. Who knows what God has in store?

I'm so anxious to move forward in all of this. I know you all know that. It has been my desire from the beginning to make these doctors work faster, to fight for my son. I know he's young and has the ability to overcome this obstacle, but time is so precious in language development and learning. Viewing research on the matter is sobering. As we wait on this and that, I can't help but look toward the future and think about what approach to therapy we will take. Should we stop using sign and try to teach him to rely on the sound he does hear? Is that even an option with his level of hearing loss? What happens if he isn't a CI candidate? Am I capable of quickly learning and teaching sign language? What if? What if? What if?

It can be overwhelming, but there are so many stories out there that are making me smile, too. Someone shared this on my facebook page today and it gave me so much hope:

"Today I attended my brother-in-law's high school graduation and was moved to tears by the valedictorian's speech. This made me think of you: he was born deaf and his condition wasn't detected until he was 4 years old. Against all odds and many negative opinions of "experts" who said he would never be successful in school and may never learn to even speak, he graduated with a 4.69 GPA and delivered one of the best valedictorian addresses I have ever heard. God is so good and I know He has great things in store for Abel too!"

I am confident that God is working for the good of us because we love him. I'm happy and anxious to help my boy in any way I can. Thank you for your prayers during all of this. I feel them.

Currently

Excited About: Being cleared to workout again postpartum. I'm tired of my achy back, soft body, and getting kicked all day long. I can't wait to hold little baby M in my arms and be able to put him down every so often so I can work out! I want to run again. I want to be fast. I want those endorphins.

Reading:

(Just Finished) 

(It was good)

Feeling: Oh, pretty good. The stress level is down a bit, I'd say. I am working ahead in the class I'm taking right now so that I won't have a ton of stuff to do as baby's due date gets closer.

Crafting: I'm going to give this a whirl. I bought all the stuff earlier this week-

(not my photo)

Also, I'm working on a display board for my sweet middle child. It is a work in progress, but it will hopefully help him to communicate by pointing to it when he needs something and is frustrated. It has basic tasks and items we use on a regular basis.

Working On: Counseling 603, Catching up on laundry so I can wash and organize tiny baby clothes, and creating new designs for my shop

Grateful For: I got a call early this week that they found some loaner hearing aids for Baby A! I was thrilled and so thankful. They won't cost us anything and he can use them as long as he needs them. He has to wear them at least three months in preparation for the cochlear implant process.

Thank you (a hearing update)

I found out today that our insurance won't cover any of the expense of A's hearing aids. We are signed up with a program specific to TN that will eventually pay for the hearing aids, but we will have to wait. No one seems to know how long. I've been frustrated at this process because my hands are always tied. The doctors/audiologists agree that he shouldn't wait to start using the hearing aids. While they won't likely help him to hear, they will keep the nerve active so that when he eventually (hopefully) is implanted with the cochlear device, it will be beneficial for him. Some people say this particular program will get organized within a month or so. I've also heard stories of folks who ended up waiting 6-9 months to get them to pay. That is not an option.

I've been calling them all day today to find out more information, but it has been to no avail. I can't get them to call me back. We are likely just going to bite the bullet and pay, but in the back of my mind I'm thinking, "How many more expenses like this will pop up?" Between all the medical bills and the new babe on the way and the new house, I feel so stretched financially. Not a day goes by that I don't think about finding a job. I don't know anyone who would hire a pregnant gal who is due in just a few months, but it's a thought I entertain.

In addition to that news, I also talked with an audiologist who said that his hearing loss was likely genetic. We will go for testing next month, but she said due to the history of his child birth (normal, natural) and babyhood (normal), she could see no explanation for it. The degree of hearing loss he has is not something that infections could cause. Which means, we should definitely do genetic testing to see how at risk baby #3 is for the same issues. Of course, that makes me quite sad. 

I was feeling so overwhelmed by it all today and then I got to the mailbox and found a card addressed to my sweet boy. Inside were names of all the people in Philadelphia, TN who had been praying for him and that brightened me up. Thank you all so much for your prayers.

God is writing his story and mine and I wouldn't change a thing. I just need to be reminded occasionally that He's in charge. We have nothing to fear.

"Cast your cares on the Lord and he will sustain you..." - Psalm 55:22

Mother's Day Weekend

Sometimes, in the midst of what feels like the busiest season of your life, a breath of fresh air blows through and you can breathe again. That's what last weekend was for me. The Captain was off on a Big, Fancy Civilian Business Trip to Florida the week prior and I was finishing up my last week of classes for the spring semester. Stresses were high. In between all the working, there were hearing appointments to attend and life to be participated in. We planned on celebrating his arrival back in town and my (hopeful) success in excelling in my classes by getting away for a little R & R, as much of that as you can have with two toddlers anyway. We ended up in a place that has shaped my family in more ways than one. My papaw was able to buy back his family farm after his family lost it many years ago. It means so much to him and has been a blessing to me, as well. It's a little oasis near the Tennessee/Georgia line called Ducktown, TN and you won't find Internet or Cell Service there even if you try.

It was perfect.

A weekend to celebrate my boys and the fact that I get to be their mother-

Completely unplugged from the world-

Unless we ventured into Blue Ridge, GA-

For the most part, we walked around the property-

Hiking-

Looking at the chickens-

and relaxing in the fresh air.

I'll cherish that weekend as long as I'm living. It's times like those that keep me going. I didn't fret about looking up signs to teach every time I talked. I didn't worry about tests or papers or appointments. I didn't use the t.v. to passify my toddler. I was just there with my favorites and it reminded me of what a happy life I have. Thanks be to God.

It was a very happy Mother's Day. I hope yours was just as sweet.

Clothed With Strength {a new shop}

Hey, y'all. You know I haven't been around much and part of that is because I've been busy with my new business! I planned on having this big hoopla GRAND OPENING but as I suck with coding and all things technical I just couldn't get the website the way I wanted it. I caved and set up an Etsy and took orders via PayPal on the facebook page and bam. It has done really well. I still eventually hope to have a legit online store one day, but until then these two avenues are working just fine. I've recently began talk with stores around the area to expand to sell there as well. So, what is it I'm selling exactly?

Clothed With Strength is an active apparel line for women. It combines two of my passions: faith and fitness! If you've followed along my blog for any length of time you know I felt lead to do something that I am passionate about, something that would help me contribute financially to my family. Last year as I began trying to get healthy and fit after having baby #2, an idea started to form in my mind. It eventually grew into what it is now and hopefully it will continue to grow. I'm having so much fun doing this! I hope you'll browse the Etsy. I've sold out of so much lately it has been hard to keep inventory in. I do have some sizes/shirts left, though so go shop if you wanna!

Here are some happy customers in their gear! 

And this week, I'm offering up this sweet deal:

30% off this New Balance Sleeveless Tank-

As I said, I've been having a lot of fun wearing and distributing this gear. I've been trying to keep up with running while preggo, but it is HARD. Last weekend, Clothed With Strength was at a local 5K in my hometown. Sales did really well and so did this 6+ month pregnant gal. I finished in 31:33, which is good for me considering the extra weight I'm packin'. I had to walk a few times because my heart rate was getting higher than Doc tells me is okay and plus, ouch, my back and belly were aching. Anyway, I was proud to have finished it but I think I'll take it easy on cardio from here on out. 

Here are some photos from the 5K:

That's my bro and my sister helping me. He ran with me and she manned the table while I was gone.

I'm just so thankful to my friends, family, and customers for making this worth my while. God has been so good to bless me with supportive people in my life and I'm very, very grateful.

I don't know where this business is headed, but I am enjoying where it is right now. Thanks so much for supporting me.

Website: Clothed With Strength
IG: @ClothedWithStrengthApparel
Like Clothed With Strength on Facebook
Etsy: ClothedWStrength

Doc Says-

"Share these" he says as he throws me a bag of 2 servings of M&Ms and saunters out the door in a suit and tie. Off to another business dinner, I'll imagine he's having steak and wine while I'm heating up chicken nuggets and pretending mashed potatoes is a vegetable. There's no chance these boys are getting any M&Ms. They've been nuts today. Mostly Baby A. He has yet another ear infection. He just can't seem to get rid of them and they are making me crazy. He's a very cranky young man these days and is making it hard on me to get anything done. It seems like my house is always in disarray. I try, I do, but you can only sweep up crumbs and wipe up milk eighty five times a day before you're just like "BRING ON THE ANTS- I'm sitting down".
I'm so tired. There's not enough time in the day and there certainly isn't enough time for me to sit down and write here, but I'm doing it anyway. That's where I've been lately- tending to my children, going to school, and working on my business in between baby #3 doctor appointments. It has been nuts. I have sat and waited in a doctor's office three times this week and I realize it's Thursday. The rate we've been going, I'm just crossing my fingers that number doesn't climb by the weeks end.
I have exactly eight days left in this semester. Everything EVERYTHING is due right now and these sicknesses my boys keep struggling with often throw a kink in my plans. I'm going to get this all done, though...and then I'm going to relax start another class. Boo.
Anyway, I really appreciate all the congratulatory comments you made on my last post about the babe starting to babble. I really was beginning to think he was on the mend and that when he got his tubes put in his ears that he would be talking up a storm in no time. I was hesitant to feel that way, but still I threw my hopes into that and I shouldn't have. Monday morning, I took him to a developmental specialist who assessed him and apologized profusely that it took her so long to see him. She said, "I don't know how he slipped through the cracks! We should have seen him after his referral in January." "Well, yeah", I thought, "Someone is finally taking me seriously about his language delay." She stepped out of the appointment to call Vanderbilt and try to get me squeezed into an appointment as quickly as possible after she heard about the delay we were experiencing in Chattanooga with both the ENT and audiologist there. She said it was unacceptable. She called Vandy and they didn't have any openings until the end of July, unless I could come the next morning because they just had a cancellation. I told her I absolutely would and began making plans to travel in the awful weather so we could get there to get him checked out by "the best." I got too worried to drive that night so I ended up leaving bright and early with my sister the next morning to drive to Nashville. The folks there relayed a much different diagnosis to us regarding his hearing. She told us that while the tests they were doing weren't as accurate as the ABR, she was confident enough to tell us that Baby A is experiencing severe to profound hearing loss. He's deaf.

I could tell you a million different things right now that I've been thinking about. It's mostly guilt. Confusion. Worry.
We started the process of getting him cochlear implants that day. She said that what she saw would need to be confirmed by his upcoming sedation ABR/tube insertion but that she was ready to get us started on this path because it does take a long time. This coming Monday, we will take my sweet boy off to have his ears molded for fitting of hearing aids. We've been told that the hearing aids will not allow him to hear, but rather get him used to having something on his ear and the sensations of possible sound amplification. During the tests, she had the machine up as loud as it would go (hurting my own ears) and he did not respond so she doesn't expect these to help at all but it is just part of the process.
I know he's usually happy. I know he'll be just fine. Still, I often break out in tears because K tries to talk to him all day. I'm sure they will develop their own way of communicating, but right now as I watch it just hurts my heart. I wish I could help Baby A. We have lots of specialists in our future who can, though and so I'm working diligently to get all these lined up for him. That's where I've been lately. I've been busy.

I'm hoping things will slow down soon and I can venture back to the land of blogging. I miss it very much. Thank you all for the texts, calls, and comments you've left already about my boy. He's going to be just fine and is exactly who God wants him to be and I can find joy in that. I'm so happy to be his mom.
Thanks for checking in with us.

Love,

*Photos by Becky Davis