Wanted...

...because some deaf children really do hear! 

The boy picked up a guitar last summer and hasn't put it down since.  So five guitars later, we started him in guitar lessons to couple his natural talent...I should say un-natural talent, God-given, God-decided-to-bless-him talent.  However you look at it, if you had asked me ten years ago when he was four if he'd be able to ever hear a guitar well, much less play one, I would have said NO.

The Teenager

 

 

 

Thirteen

 

I remember my first Mother's Day. I wondered if I would still be a mother a week later, a month later or a year later. People buzzed around me with concern for my newborn child. We become mothers because we have children. This little guy taught me how to be selfless, how to be patient, how to be deaf and then how to hear. My life slowed down and I watched him grow up in slow motion, yet here he is, a teenager.

 

Not long ago I was driving down the road on the way to a Wednesday night church service and I hear a 12 year old voice lift from the back seat, "Mama. I know why you only had two kids." I respond at the odd and random comment, "Oh you do? Okay, let's hear it." He said, "because you didn't want anymore deaf kids. We're a lot of trouble and you didn't want to have to do all that again." I quickly interrupted, "That's not true or I would have never had your sister. You would be an only child." A smile reached his face as we pulled into the parking lot.

 

Children teach their parents just as much as parents teach their children. Families grow and learn how to love each other despite faults and failures. There are times I wake up in the mornings and hear a child's voice that thirteen years ago, I was certain I would never hear. He enjoys his silence at times and will often belt out an old church hymn in the shower and I realize, he can't even hear his own voice...he's just offering it selflessly to his family and to The Lord. He can put his "ears" on and listen to the rain pound our old tin roof and a smile of appreciation will spread across his face. He brings more joy to our family with each passing day and I am so very thankful I was chosen to be his mother.

 

We are honored to own a teenager this day. He is loved, he is appreciated, he is a Blessing. Happy birthday buddy.

Study Day

 Back at the first of the year, as my Dermatologist removed the cancerous tumor on my foot, we discussed my children. She was very interested in the oldest child's Goldenhar Syndrome. She had heard of it, but never seen a person who had been diagnosed to her recollection...so she asked us to participate in a large event held there each November where Dermatology Doctors come from far and wide to learn more...

My mom and I loaded the boy up at 5 am this morning and headed south, to UAB's Kirkland Clinic. They provided us with breakfast, coffee, cookies, other snacks, and more coffee. The boy earned a nice monetary prize from the University for his time and that is probably the only reason he wanted to go (typical). They placed us in a room (other patients were there also) and I kid you not...over a hundred doctors from all over the world came in small groups where I gave my "speech" on cochlear implants, Goldenhar Syndrome, skin tags, scars, dermoids of the eye, etc etc etc...

Gage did grow tired of the whole event after the first hour (we had already seen like 80 people at that point) but he was polite as expected and they all thanked him/us for coming and helping out over and over again.

I had explained to him before we ever went that this would help some child in the future. If they come across another child with these features, conditions, anomalies, they may have some idea what direction to point the parents...and that is all we wanted to do. They also reiterated that him as well so he was happy to help.

Both of the kids did well on their report cards this time, and we continue to mainstream as we always have. They are both participating in the church Christmas play again this year and we are about to leave for practice now. We still hope to upgrade Brooklyn's "ears" by April of next year as we must come up with the funds, since insurance will only cover 80%, we'll need over 3 grand before we upgrade to the N6s. Fingers crossed and praying now, we hope to accomplish this for her. She is on her last few spare parts right now! Until next time....

Lil Updates

I have become the terrible blogger. My kids have even updated their blogs and I have not! I'm telling you, between my two jobs (sub-teaching, accounting office), home, PTO, church, kids, husband...basically my busy and fun-filled life, I barely have time to sit at the computer anymore.

Brook: We are still hoping to upgrade her "ears" around March or so. She needs *and deserves* an upgrade since she's had these processors for over six years...and if you have kids, you know how much wear/tear these things go through in six years no matter how well you take care of them! She is also about to have a birthday...the day after Christmas but we celebrated early and had a very small pizza party Saturday. She wanted to invited EVERYONE but unfortunately that wasn't allowed and the ones she did invite got struck by the nasty virus that is going around the school....she almost didn't make it herself but got well in time to go for pizza w/a few family and friends.

Gage: He is great. He's a boy (lol). He has not used an FM system all year long (at his request) and his grades are pretty average now of what we would expect from him. He enjoys school, and he's really enjoying church these days. He wakes up each morning with his ADHD in full swing but right when I'm about to pull him down from the cabinets, walls, rooftop *lol*, he'll brighten my day by belting a church hymn from his breath and my day totally changes. We work closely with our doctor to manage his ADHD and we seem to have it under control for the most part.

One of his batteries died yesterday in class and went for a few hours with one "ear" but made it fine. I was at work and he said he didn't want to bother me so he just "made-do" for the remainder of the day. He is due for MAPping just after Christmas while they are on break from school and Brook will go for her yearly in January!

That's it from the Blakelys. Have a very merry Christmas!!

I am thankful they are deaf

If you had asked me eleven years ago if I was glad my first born lived in silence, I would have said no. The experts told me he would learn to speak though it would be limited and at a much slower pace, and that I needed to narrate everything I do. When I woke in the mornings we put his prosthetic "ears" on knowing he would only hear certain parts of my words but we were to spend our day talking...about everything. If I walked to the kitchen I sang, "walk, walk, walk," with every single step in hopes that one day, he would learn that everything, even motions, had names, sounds, labels. By the end of the day, I rarely even answered the phone and had to force myself to speak to a tired husband when he came home from work, because my words had been given to my child.

There were days I thought would never end and when he finally got his cochlear implant, we had to start over again. Sister came along, and we were blessed to start it once more for her so words became part of our life. I learned to describe feelings and emotions, we stopped at every tree, we smelled every flower, we listened to every bird. Eleven years have passed now and I can honestly say that I'm thankful my children are deaf.

My busy world slowed down for years as they began to grow and learn. Each day, I'd step outside my door and wonder if there was anything else left that I could give my children and something new would appear. Their little face would light up with excitement and tears would run down my cheeks as The Blessings poured in day after day.

I had no idea that The Lord was crafting me all this time. HE was teaching me how to see HIM, how to feel HIM, and how to teach my kids about HIM. HE was teaching me to write with the same words I taught my children only they became more than just words over time. HE taught me to notice everything and then translate what my eyes and heart could see. Today, I am thankful HE lets me feel. If my world had not slowed down a few years ago to absorb HIM, I would not have the relationship with Christ that I do today. He took something very close and special to me, my children, and had them teach me how to hear HIM.

Have a wonderful Thanksgiving everyone!

Blakely Updates

I think my child blogs more than I do now. That's what happens when you have two jobs, two kids, a husband and a wonderfully fun place to live! I keep extremely busy these days between all of that and PTO and church so I have my excuses for not blogging.

We finally have Brook's FM working again on both ears. She's back on track. Even though she's only in third grade, I never have to tell her to do homework, she just does it. The other kid is a different story and his grades reflect that! He just got his ears MAPped again so he's hearing better for now and will go back next month as usual. His nose bleeds have picked up once again. We were supposed to get that cauterized before, during another surgery, but we never had it written down for the surgeon to do, just a verbal thing, so with Gman's complications it got overlooked. We may end up having to take him back one of these days for a little procedure to fix that. He hates nose bleeds.

We are excited about Thanksgiving this week, and look forward to family time. I've actually been put in charge of two casseroles for the first time ever so let's hope they are edible. I'll be gone ALL DAY LONG on Friday for my annual shopping trip and we plan to put up our Christmas tree this weekend! I have so much to be thankful for and everyday is kinda like Thanksgiving for me so say your prayers, and let HIM know what you are thankful for this year!

Trunk or Treat

Our first Trunk or Treat at our church and the picture of my trunk decided to do a disappearing act on my phone! It wasn't that special but we had blue and white lights all in the trunk with snakes and candy everywhere. I did capture some other cute trunks though and Brooklyn being a rock star. Gage was too mature to dress up at the church event (lol) and he was too busy running 90 mph with his church buddies so I never got a shot of him.

I will tell you that even at close range, it is still to this day harder for Gage to "hear" in the dark which means he uses lip reading quite a bit. I don't mind I assure you in fact I encourage it with him. He's had way too many surgeries and although there was once a time he didn't rely on it at all, he needs the visual. Brooklyn is actually a better lip reader now than she used to be. She used to not be able to read speech at all, I could say watermelon and she's say shoe??? My mother actually pointed out that she was doing better (I didn't believe her at first) after Brook had spent the night with her, and sure enough...she is. However, during the day with her ears on, she doesn't need it at all.

Pumpkin Patch

So B is down to one "ear" inside the classroom. Both of her processors are working fine but part of her FM system is out for repairs so she has to make do with listening to her teacher via one ear until the other FM battery cage is repaired. It shouldn't take long so hopefully next week or so, it'll be returned.


We took the kids to the Pumpkin Patch with our church yesterday, they loved it! Even my Gman who is too big for all things childish. They had a band, they had food, they pumpkins, they had hay rides and huge jumpy things...My kids didn't go in the enclosed jumpies but they did do the slides.

they were supposed to make silly faces

She needs new ears

Gman had his much needed MAPping session this past week. I was in survival mode and trying to get well from a wild form of crud that unleashed inside my head and lungs, so I'm just now feeling bloggy!

We had hoped this tax season (around March or so) that we would have been able to upgrade Brook's processors. She's had them for years and they've been out of warranty for quite some time. However, with all of Gman's surgeries, we have always had extra parts to make do if something broke. We just never got around to it and the cost of such an upgrade is very steep. Like just under three grand steep (that is just a guess-our insurance will cover 80% of an upgrade-they are just under 20 grand for two ears-but we would have a trade-in credit with two of her old processors from what I can tell...

The bottom line is that by this next tax season, we will have enough saved back to upgrade the child to new ears. That is going to be hard with Christmas around the corner but she needs them, she wants them, and she deserves them. I am very excited about it and will be praying that we accomplish this and get that baby some new ears!!

She goes in for her annual MAPping in January and we will know more about the finances, and possible upgrade at that time. Gman is still going every six weeks at this point and will be MAPped again before our Thanksgiving break. He needed lots of changes on both ears this time, and he did so well...he actually earned a prize!! Blakelys never earn prizes there (they just give up) so that was a real treat!

We are torn between going to the 300th cochlear implant celebration next Sunday with The HEAR Center to the ever-so-awesome McWane Center or the Pumpkin Patch with our church. We signed up for both and if it rains we have decided to attend the science center (my kids have been recently already) and if not...Pumpkin Patch here we come!

Lake Winnie

Thanking The Lord for double sided tape and hats...

...because this "kiddie park" is for big kiddies! Some of those rides at Lake Winnie put the free fall at Six Flags to shame. But I knew we were in for a hot, sweaty, fast and wet day at this amusement park so I put extra tape on the kids' cochlear implant processors so we didn't have an "ear" fly off! If you want to know my real thoughts on this park, click here!

Cutting the Cord

It goes without saying that I love my kids as much as anyone else loves their own...


...but there comes a time when you have to cut the cord. We've worked awfully hard to prepare our kids for the world, and we've worked awfully hard to prepare the world for our kids, so by this age, they have to learn to solve many issues on their own. I will be here for as long as I can to help them when they can't, but there comes a time in everyone's childhood when you learn to face things such as misunderstandings with friends and teachers (hearing loss or not) without Mom having to spend all of her energy every single day worrying about the kids. I have put my trust in the "raising" I have given them and hope that even when they do make mistakes, misjudge, or find themselves on the receiving end of the misjudgement or misinterpretation, that they can talk things out and clear up the wrong.

I have one child that isn't scared or afraid to clear things up, even with adults but she gets mad quick if people don't listen to her so that's what we are working on with her...staying calm, even when the hearing don't listen. I will gladly step in after she's tried her best to resolve issues and I'm very glad she has a strong personality and isn't scared to 'fix' things.

I have another child however, who will only do this to some degree, then he gets scared and runs to me..."write my teacher a note and tell him..." he says. I finally told him one day when he was accused of misbehaving in the bathroom (which is not really characteristic of him, but he's 11-and I live with him, he's capable of anything!)..."No. I can't go running up there or write notes and emails for everything little thing you face. If you are scared to talk to him about it, YOU write a note." I let him know that it's okay to apologize to someone, even if you aren't in the wrong. If they think you are, apologize and move on-forgive them and hope they forgive you...there is a much bigger picture. Sitting around worrying all time about every little thing isn't fun, isn't productive, and according to The Bible, isn't very Christian. You give your worries to The Lord and the trust and faith you have in Him should be enough to move on. I have to remind myself of this too sometimes. It sure feels good though when you've truly let go and let God.

So he wrote a note. It said something like, "I am sorry you got upset with me yesterday. I do not play around in the bathroom, I handle my business and get out..."
It went on a little more but that's what it took for him to move on. Everything was fine, and he didn't have to sit and worry about it anymore. They are growing up...so fast. But so glad they are starting to solve some things on their own. It takes a tremendous weight off of me as a mom. I'll always worry, but giving them coping skills is a benefit to us all.

Week Two

We've started week two of school already here in Bama. Gage is having a difficult time hearing, we're having some issues with one of his processors changing/turning up when you slightly touch the side of it...he's already been kicked in the head (on accident, at PE again-what is it w/these boys?) but so far no issues have resulted from that.

I'm guessing if he doesn't improve (modify classroom/accommodations) then I'll have enforce the FM microphone system that he DOES NOT WANT TO WEAR ANYMORE!!

Brook is doing quite well. She's using her FM system, her teacher unfortunately had fallen ill unexpectedly and she's hoping to come back at the end of this week, so she's had a sub so far.

We went camping this past weekend and had a wonderful time as usual. The kids brought their bikes, they swam, and they fished. One of Brook's processors had issues though and it needed a new part (which was at home) so she had to go a full day with just one "ear". She hated it...but made it just fine.

Other than that, we are just enjoying ourselves. We love our friends, our family, our school, our church...what more could you ask for?

Almost There

Well, it is Sunday. We will pull up at that school around 7:30 in the morning. I've agreed to stay all day tomorrow and help/volunteer so I might peek in on my guys but for the most part, I'll be helping with the smaller kids. After they get settled, I might walk around and help various teachers as needed but the main thing is getting them all in their rooms, settled, assist with lunch time and possibly getting them to their buses or cars in the afternoon.

We have our supplies already at the school since we attended Friday's Meet/Greet the Teachers Day so all they need is their lunch money for the week and their back packs...which is packed  with their supplies such as glasses cleaner, cochlear implant batteries, extra battery cages should they need them, tape for the processors if they need it...

I think we are good to go. Say a little prayer for all these kiddos starting school, and the faculty as well. There's so much opportunity inside those school doors, but where there's opportunity, there is distraction. Pray they look toward opportunity and not distractions...(and I'm not talking ADHD here-I'm talking Spiritual Opportunity/Distraction)

Getting a Job

Well, we've reached a decision. After eleven years of staying home with the kids, I want need to get a job...a full-time, with benefits, real job. I prefer something with the school system (the high school would be great!) since I still need to think about the kids during school breaks. Ideally, a special needs aide would be PERFECT for me. So, over this next school year, I plan to watch for something to become available. I know The Lord is saving something special just for me, so I will be watchful over the next several months. I can't take just anything because I would be miserable with just anything I know. I'm looking forward to getting up everyday, and making a difference for some child who needs me. Wish me luck!

VBS

The Cochlear Kids are having a wonderful time at Vacation Bible School at our church. They are learning verses (and repeating them on cue) and songs (with a little more difficulty but they are doing awesome)...just like the other kids. Church has been the BEST thing for my kids, despite my initial concerns that they couldn't hear well, or sit still (or any other excuse I gave for not taking them regularly). They actually have learned so much, including how to sit still and behave in church!!

Here they are playing water balloon volleyball and yes, Gage's leg is soaked right here...guess he fell a little short at catching those balloons with the sheet but it was all about team work. That night the story was about Gideon and his army of 300 God picked. They made a homemade trumpet with that one and last night after hearing about David and Goliath, they made sling shots. They can't wait to go back tonight and see what they learn.

Still Amazed

She stood before me as a two year old child. I outstretched my hand because the day was ending, and darkness surrounded my little country house. She stopped in her tracks, looked at my hand, and her eyes filled with tears. One by one, she removed the cochlear implants that had filled her day with the glorious sounds of Dora, music, her talking dolls and her family. She pulled each pink processor up to her lips and kissed them goodnight and she began to sob. I gave her a confident smile that told her she could have them back in the morning, but I knew she was afraid they'd be gone when she woke, so she cried herself to sleep.


Today, I was reminded of this as I watched the same child, now eight years old, answer a simple question. I had asked her to tell me what happened in church since I unfortunately had to miss when the boy wasn't up to par. This is what she said...

"Oh you missed a lot. Luke said something at the piano. I didn't understand everything he said, but he said something. Somebody's mother got the kids to sing. She was wearing a red shirt. Joel got picked to sing a song. He chose "The Old Rugged Cross" and we all sang it together. We didn't go to Sunday School because so many people kept standing up. Zac also stood and told stories. He talked about the wreck they were almost in with that 18 wheeler the other night. Debbie, Dock, Adam, Luke's wife and some more people sang a good song. Oh, and we aren't having church on Wednesday because it's the Fourth of July."

I am still amazed at what all HE gives my family. Of all the times I've not listened in my life...I was given a child who cried when she couldn't. Now she was able to give Mama a Blessing by letting me in on what all The Lord gave our little country church today. No matter what we have or don't have when we wake up each day, He will be there for us. He'll never leave us.

Hot Hot Hot

It is hot hot hot here in Alabama. Might be 104 or so today and the next few days as well. We need rain rain rain!!

The kids stayed in the pool for like 3 hours yesterday. No kidding, that's the only way they could play outside! They communicate just fine without their devices and quite frankly I think they enjoy the quiet.

We've been at revival all week at our church. They LOVED it. And they behaved so well! Brook went to work with me each day for about three hours during the mornings, then Gage had a dentist appointment on Monday. He has one tooth that is very loose but he agreed to pull it himself. Then he has two more in the back that his mouth just won't let go of, so he's scheduled for the 9th to have them pulled by the dentist....laughing gas here we come...lol

He also had mapping this week. We made it through that appointment and have NOTHING scheduled for next week but good ole family time (and one b'day party)!!

When I Am Deaf

As we get the news that our children are deaf, many of us sit back and try to figure out how in the world they could mistake our child who obviously can hear, as a deaf child. One day, as reality floods in with the tears, the sadness, the heartache, the worry, the guilt, we accept the news and move on...because we have to. We educate our ignorant minds and realize that we are never going to be like other families, other parents, other mothers. Some of us eventually realize that what they were born without, can be the biggest gift of all...

Throughout our early years of parenting, we are forced to place ourselves in our children's shoes. We enter a grocery store and realize that our voices can get lost in the wide open space so we move in close to our children when we speak so they see or hear us. We know that midnight storms will not wake our kids because of the loud howling wind, but we pull their curtains tight so the flashes of lightening won't startle their little eyes and hope the deep booming thunder doesn't shake their cribs. We repeat questions for them when their big blue eyes roll over to our direction without them even asking because we know they didn't understand. Also parents of deaf children, we learn to feel, in more ways than one...

When we started going to our little country church, one of the first things I did, was feel for the service. I knew that if I could feel HIM, without seeing or hearing Him, it would be the right place for my kids. Some of THE BEST church services have been when I am deaf...

There have been times, when I am deaf, that I need to close my eyes completely to simply absorb what's around me. If you keep very still, that preacher's voice can reach right up through the bottom of the pew and grab you by the gut so hard your back arches over to slump as you begin to pray. Sometimes, when I am deaf, I am led to Altar, only to find it so crowded that I stop right beside the piano. On bended knees I'll reach up and with outstretched fingers, I'll feel the music as the pianist pounds ivory keys which seem to strum right into my heart. Sometimes, when I am deaf, He begins to show me things that may not matter to anyone else...but to me, it's Pure, it's Golden, it's Richer than anything I've ever received...yet the only price I paid for it was Believing.

Being deaf sometimes can be a true Blessing, and I am thankful for the times He lets us feel. I don't always listen despite having two functional ears and I don't always see though my vision is clear. But I know how to feel.

She Heard

For the first time ever, my daughter got in the car last night after our church service, and told ME about the service. If you have a deaf child similar to mine, you know this is an amazing accomplishment. The preacher last night was much more soft spoken than our Pastor, he used no mic, and we were sitting in the middle of the small church.

"Mama, I heard the story. I heard what he said about the lady in the hospital needing a heart scan and she was jumping around mad at first. But they were nice to her anyway, so she started being nicer too."

Usually, I'm the one repeating the stories, repeating the messages, repeating words to songs, but last night, she listened...she heard.

BSHM

May is Better Speech and Hearing Month and this blogger is celebrating by inviting guests to write on her blog. Today she's featuring the Cochlear Kids!

CLICK HERE TO READ