Spring Breakin' It

So what have The Blakelys been up to? It is best to do this in picture form. They were recently seen for an ear "tune up". Brook is still on a once per year or as needed basis. Gage is still as needed but seems to be going every 9 weeks or so which is a huge jump from our monthly visits from previous years.

What else is new? We've spent the first three days of our Spring Break in either Dental or Orthodontic offices (no surprise there), trying to get some things taken care of while we are all out of school. No word on when they think Gage will (or if it is out of the plan) need his jaw distraction. We are still in the infant stages of Orthodontia.

I no longer work at the elementary school, I have moved over to the high school. Brooklyn will be over there next school year so it made sense for me to go ahead while the opportunity was there to make the transition. It wasn't easy but everyone has seemed to have adjusted well.

We still love being at home and wouldn't trade it for any place on earth. We love the sunrises and sunsets, we love to spend time in the woods with campfires, four wheeling, and just enjoying family and friends.

Brook still loves babies (but real ones now, not dolls) and will scoop one up anywhere she can find one. I see lots of babysitting in her future as she approaches the teenage years. Gage is obsessed with building things. He is always, everyday, in his shed working on furniture or handmade guitars.

We lost our beloved dog Marley in a tragic accident so the husband adopted two puppies (both Lab mixes) and they could not be more adorable. The kids really love them!

Next on our list...Brooklyn tries out for JV Volleyball in May. We wish her the best of luck. She already worries about how she will keep her implants on as she jumps around the court. We know there are many sport options that can render this, she just needs something to worry about (smile).

Have a Blessed Spring Break

Making an Electric Guitar

So what do bored teens do when school's out for summer...make homemade electric guitars of course!  This first video is the very first one he made last week.

The upgraded version of the guitar soon followed when a neighbor (who is very smart about a lot of topics-guitars is not one of them but welcomed the challenge) took the boy under his wing and let him come over everyday (for hours on end) and use tools, ask questions, and together...two great minds came up with this: (though he warns he still has string work to do)

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.

A Blakely Update

Not a lot of posting from the Cochlear Kids as of late but we are in full swing here in Alabama public school. Gage has started the 8th grade and is doing well so far. They are beginning to read The Giver in English class. He was also assigned Music Class and despite his initial thoughts, it will be a true asset to him in the future if he wants to play guitar. He picked it up a few short weeks ago on summer break and with a few chords from his daddy and a few from a cousin, he's learning...

Brooklyn has entered the 5th grade. She is still with me everyday since I work at the school full-time now. She will leave me after the 6th grade and go over to the high school with her brother. Her N6s are still doing fabulous! She loves her chickens which will start laying eggs within the next few weeks!

We love it here on "the mountain"...the world moves a whole lot faster than we do but we wouldn't change a thing!

Waiting to Hear...

...and the latest response from SunMed is..."Mrs. Blakely, I will contact you as soon as I hear from the insurance company." Here is what I would send if I we are still waiting at the end of this week:


Dear (insurance company):

My ten year old child, Brooklyn Blakely, is seeking approval for replacement processors for her cochlear implants. I understand that your work load holds tremendous weight and we are trying to express patience as we await this approval but we have basically been on hold since the first of February.

While everyone in your office enjoys impromptu conversations with strangers in a day's passing or the background music playing overhead in your favorite local retailer, my child is missing out. She smiles and nods her head at random people as they speak because she has no idea what they just said, or may have asked. She has to ask what song is on the radio because half the time sound is cutting in and out. The eight year old "ears" she is currently wearing fail her almost daily as she gets up in the middle of class instruction to try to restart them, sometimes without any luck at all. This is very embarrassing for her since nobody else in her class has hearing loss.

While everyone in your office enjoys relaxing at home after work, she comes home in tears on some days, purely exhausted from trying to hear the world around her. I understand the difficulty of an overwhelming case load, but as you hear the softest droplets of the rain on your rooftop or listen to the words of your favorite church hymn, please remember my daughter. She needs those things too. Thank you so much and please look into her case if you get a chance. It is important we get her replacements as soon as possible.

Thank you, Val Blakely

The Beach

We are back from the beach! The kids had fun, I had fun, the rest of the family had fun...

My big mistake? Putting sunscreen on the kids while they were wearing their cochlear implants! When they took them off, I didn't think to put it on behind their ears and BOY DID THEY BURN!! Gman isn't even able to wear one of his, it's that bad. Yes we have ways of attaching them to the shirt collar but at home, they are happy with or without.

Goldenhar Boy

So I was lying on the O.R. table (it was actually more like a doctor's office-I had no anesthesia) trying to think of anything to say to drown out that LOUD snipping as the surgeon removed skin and tissue deep within my foot (another skin cancer). I blurted out (in a voice that was a little too loud for the awkward quiet) "So where did my other doctor go?" Realizing instantly my voice was off key and too loud I tried to retract some composure as my blood pressure soared with every SNIP, SNIP, SNIP!!!! "I mean, Dr. C? She's not here anymore right? She always used to ask me questions about my Goldenhar Boy."

She knew exactly what I meant when I said the word Goldenhar and she starting spouting off facts she knew to confirm I was referring to the same syndrome, "Does he have any Renal issues?" Our conversation progressed just as I had hoped and I forgot all about what this lady was amputating...

By the time she finished sewing me up, I had agreed to bring him in, next November, to meet doctors from all over as she was in charge of organizing an annual event for doctors to meet with patients who have disorders, dermatology issues, or rare syndromes which might land them in an office like theirs one day. Basically Gage and I will kinda sit around and chat as these doctors make their way from group to group and answer any questions they may have. I warned her Gage was quite the talker and he's used to helping out the medical field any way he can. We know that, not only could it affect his own future, but others that come in behind him with this same rare syndrome...
a doctor will be able to say, "Oh Goldenhar Syndrome! Yes, I'm familiar with that, I met a 12 year old boy with that when I was in Alabama once!"

We are beginning our Spring Break at school this weekend and it won't be long until we are here for the Summer!! Woop Woop!

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!

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?

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!

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.

Gulf Shores Beach

So we just got back from the beach here in glorious Alabama. Even when it rains 85% of the time, you are still at the beach! We barely had any time to actually get down there in the sand...maybe 5 whole hours the entire trip. However, as long as it wasn't lightening, we let the kids swim in the pool, even during downpours. We sat there under the shelter of the building which had tons of chairs and we just pretended it was perfect weather.

I have waterproof containers (like Otter boxes or waterproof cell phone boxes) that I use to put the kids' implants in while they are swimming, but Gage wore his most of the time down at the ocean. He likes to catch fish in a net and he tapes his "ears" on really well so I don't worry too much about them falling off. As the rain picked up though, he did come to me and turn them in, because they were getting quiet. I always bring a dry n store down there with us so I'd simply put them in the machine for a an hour or so when we got back to the room (and then again all night long at the end of the day) and they were perfectly fine.

this looks sad...all that rain

Cousin Kendall went with us



Cuz Kendall, Brooklyn, Gage

There was one episode where Brook locked herself in the bathroom to take a shower...I needed to get in there to wash her hair (she had an earache) but we are so used to the switch being on the outside of the door rather than inside, there was no way I could alert her. Beating on the wall was out of the question due to being in a condo w/neighbors above and below and all around (they can usually feel a good door pounding, lol). But she finally opened the door and everything worked out...

MAP Day

Whew. That's all I have left to say about the MAPping appointment. Besides, I've already blogged it all HERE.

But Summer Break has started here for the Blakely kids and aside from the little incidences with today appointment, we are enjoying our time away...from almost everything.

At our appointment, we met a cute little dude from The Bell Center who had just graduated but is attending the summer program AND we saw a little girl and her mom who attended one of our PEEPs in the Park events last year. We have been wondering about her all this time. She is a cochlear implant candidate but the family still isn't convinced or ready to make that type of commitment. Loved catching up with her. We had hoped to run into another family that blogs, but we missed them, darn.

Little man is hearing better and should be good til next month while Brook will probably get a quick tune-up before school starts but she only needs a once a year MAPping these days. Fantastic. We discussed going back to the Geneticist office who may or may not be able to determine a cause or link between the two kids' hearing loss now.

The Wrong Thing

Due to the fact that I've received multiple private messages on Facebook about this one single blog post from my other blog...(click here)...I've decided to cross post it here and tell a quick little story that I was reminded of, when a friend read that post.

For my family, it has never been wrong for other children to ask questions. I have always taught my kids that when other kids ask them "what's wrong with their ears" or something similar, the best thing to do is answer them. If they don't feel comfortable doing that, they can come get me and I'll do it for them but I prefer my kids answer questions themselves...this builds confidence and they need to use the voice that The Lord gave them...I am just their back-up plan.

Here is The Wrong Thing to do...

On several occasions (when my kids were tiny), I've watched small children stare at my children's ears. Sometimes the pure fascination in their eyes would bring a smile to my face. My small child would stare back with no answers to give yet and only a few clear words that nothing to do with cochlear implants. Just as I am about to give the child the answers he/she deserves, Mom comes over...looks at my child and in a gasp, shew her kid away. We were never even given a chance. I wanted to tell the child, the mother that my children's ears didn't work, at all, but God decided that He had some things for them to hear, so we were given devices that make their ears hear sometimes...

But instead, an embarrassed mother that had no answers and apparently would kill over if her kid asked a question, ran away from a really great family. She'll never know how funny my kids are. She'll never know what a gift we were given. She'll never know that it's okay to ask honest questions. Some of our biggest Blessings have come from brave people who have stood in line with us, talked to us until we hated to say goodbye, laughed with us, learned with us, discovered with us...and made it okay for us. Our confidence was given by those brave people who didn't run away. My heart has sank low lots of times in the beginning, when my kids were smaller. But I have to say in hindsight that the confidence also came from those who ran...and I guess I should thank them as well...because I knew that soon, I wouldn't let anyone run. I'd politely tell them that it's okay, it's fine and I'd show them that special needs kids are approachable...which is exactly what happened.

So if you're still stuck in that rut, of letting people stare, not answering questions you know they have...if you don't speak up, your kids never will either. Most of the time, my oldest (who isn't shy) will answer all the questions himself. Sister is a little shy but that doesn't mean we can't take questions. Once people know they are listening and talking to a deaf person, amazement sets in. I have to explain to most hearing people that these devices don't magically make their little brains understand what sounds are...it takes an incredible amount of therapy...an incredible amount of family dedication, an incredible amount of hard work from the child and everyone around the child, but it's all worth it.

This is an old video for those who have never seen my kids without their "ears"



Sometimes the captioned version doesn't work well but here it is on youtube also--he was trying to let her FEEL him talk--she's not a very good speech reader--unlike him.

It chose me

A friend of mine from church publicly thanked his wife the other day for being such a great stay-at-home wife/mother. She was sick and he had to take his little boys to the pool, washed dishes, folded lots of laundry, entertained the boys some more, etc. etc. while she lied in bed...sick. It's a draining profession I know, but we Mommies (or stay at home Daddies) get used it.

I had a full time job in the Accounting Dept. of a very large beverage distributor in the big city when I had my first child. I couldn't wait to get back to work and I didn't even wait for my full 6 weeks post surgery recovery time to end. My husband's schedule required him to pull weekend doubles at the restaurant he managed at the time so this gave him a couple of sporadic off days during the week. His schedule, was really the only reason I was able to make it there one more year after my son was born...and the fact my family gave us any off days they had to help us out too.

At his birth, we knew he had "issues" that needed to be investigated, scanned, removed, etc., and we spent most of that first year, in and out of the hospital for all sorts of procedures/surgeries and lots of times, we had three appointments per week. Luckily my husband lots of times was able to pick our son up from daycare, drive him to me in the big city (an hour away) while the baby screamed the entire way, so he could pick me up from work and attend the necessary appointments, then drop me back off to finish my day. You see, deaf children are required just like all other children here in the U.S. to be turned around backwards in the car(until around age one), hence the word-rear facing car seat-but when they can no longer hear, or see their parents driving...they scream. Brook wasn't so bad because big brother was facing forward and could play with her as she rode backwards but Gage was all alone. But my point is, we were a team, my husband and I, and we were in survival mode.

After I realized my son stayed VERY sick with a weak immune system as his only defence for daycare and the fact what little speech he had was troubled, I decided to give in to what had been picking at me for the entire year, and I left work. It was my burden to bear and I was ready to bear it.

I had no idea how hard switching jobs would be. I remember sitting at my desk during lunch as I finished up the three/four week notice and I made a list. I would vacuum on Mondays, wash one load of clothes a day, change linens on Sundays, etc. Luckily I can laugh at it now, but it was never that easy. I did the normal things most stay-at-home moms do but I also focused on speech therapy, which before he could hear, was more like language therapy. He was learning to read lips but I talked to him all day, everyday, as if he could hear to expose him to as much as possible. But my biggest mistake ever...was removing the burden from my husband. I tried to do EVERYTHING myself and was digging myself a hole so deep, it took The Lord to get me out of it. I had no strength left in me, to do everything alone, anymore. My husband was more than willing to help but by that time, I had needed more than a physical rescue.

I've taken on jobs over the years, I still work in Accounting during tax season most of the time, helping out a former employer and I substitute teach. I've become the stay-at-home working mom that works while her children are at school, which allows me to have summers off with them! I love my job now and have for years. It was tough, but it got better. I am so thankful that He chose this job for me, because I would have never picked it for myself. We have only a half day of school left (Tuesday) and we're free to begin our summer...my most challenging and my most fun time of the year. I didn't choose to stay at home as my job, it chose me...and I'm very thankful.

Deuteronomy 28:1-3

1 “Now it shall come to pass, if you diligently obey the voice of the Lord your God, to observe carefully all His commandments which I command you today, that the Lord your God will set you high above all nations of the earth. And all these blessings shall come upon you and overtake you, because you obey the voice of the Lord your God: “Blessed shall you be in the city, and blessed shall you be in the country."

I saw their smiles when they discovered something new, I watched them in amazement as they learned to hear and speak, I learned how to be a better parent, a better wife, and a better Christian...just by being a stay-at-home mom. I would have never chosen this for myself, I really really wanted to work outside of the home. But for my family, my place was here. It took The Lord to move me into that office and quit a job that I loved, but the benefits have more than out-weighed the costs.

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.

It Was an Accident...

Little boys...what can I say? Although my daughter has been in the E.R. more times for injuries, little boys will shred Mama's nerves put us through the wringer too.

When Gman got in the car yesterday after school he says, "Now Mama, it was just an accident...but at P.E. while we were playing kickball, (boy's name) and I ran into each other, tripped, fell and he accidentally kicked me right where my implant is..." waiting waiting waiting for Mama to go nuts

When I heard the name of the other little boy man, I knew it was totally an accident and I calmly asked if he could hear well, if it hurt any, and if the other little boy was okay!! He said yes to everything and despite the fact he didn't want me to, I looked at it really really good when we got home. Nothing, it was perfectly fine.

Accidents can, do and WILL happen. Under most circumstances these implants are very durable these days. Sometimes, people aren't so lucky and need to have them replaced. Today we are very thankful that we will not be going in for a replacement surgery at this time.

Gage is currently taking the State testing this week along with everyone else his age (grades 3-6) and also during the first of next week. He is removed from his class along with a couple of other people who need a smaller, private setting to take the tests. He is doing well, despite the fact HE HATES THESE TESTS!! But we are down to only six weeks of school left, and then SUMMER VACATION!!!

The Coyote

One of my biggest concerns with having deaf children....has always been safety. We live in the country and wild animals aren't hard to find. Just this morning, four little ears wearing cochlear implants ran inside and proclaimed, "We hear something!! Hurry!" I ran outside to find that a coyote was very near. My dogs had decided to speed it on past our property but the kids, who had not a care in the world, were alarmed when they heard it. Thank goodness! Gman has decided to make a spear from a stick to ward off future predators, and Brook has decided to scare them away...

The phone's in the toilet

So I got to work yesterday and my boss had no cell phone. He'd accidentally dropped it in the (clean) toilet the night before and he was frustrated that he'd have to go spend another $300 on a new phone.

This is where knowing a couple of kids with cochlear implants came in handy! I raced back home to retrieve a dry n' store machine (we still call them that, not sure what they say these days-we're old school) and although I couldn't save his battery, the phone is fine! Most people have never even heard of these machines which will basically dehumidify electronics. So, if you drop your cell in pool or toilet or lake, etc. find a friend with a cochlear implant, they might have just what you need!!!

A quick run down

Here is a quick run down of all our blogs and what they are about since we have so many. We might possibly be the most blogging family I know! But we love to write and share and laugh and cry and love and have fun and.....

Brook's Blog-Buzy Beez Blog (click here) This is our newest, she's been begging for a blog for quite some time. Totally supervised she will share her thoughts, her art, her photography, etc. I do not edit her grammar or spelling but will add input at the bottom or in brackets as needed for interpretation.

Gage's Blog-He still loves to invent and create new things. He doesn't blog as often as the rest of us but he still like to show his creations to his buddies and family and anyone interested (click here)

The Road-becoming more and more popular, my spiritual blog. Nothing like feeling The Spirit and loving life both the good and bad (click here)

One Brick Shy-this is my humorous blog. I give very vivid details of my life as I make preparations to enter the world of insanity one day at a time (click here)

I have others that aren't as active-but these are my favorites. We hide very little around the Blakely household that's for sure.