Deaf Child Behind The Wheel

Radio off, windows up, minimal talking and we are off. I guess I am as nervous as any other parent giving full control of a massive deadly weapon to their 15 year old child.

Truthfully, I thought the fact that he is hearing impaired would multiply that fear ten fold but so far, that isn't really a factor. He does a great job. We have had him drive at various times, even at night and in heavy rain. Next on our list is completely deaf...just down the road and back. He has to learn what it feels like so if batteries die, he don't panic and wreck trying attain his sound back. He needs remain calm, remain in control and get to where his going safely.

I think our biggest concern is (as he gets older), if he were to get pulled over, would he be able to safely communicate to an officer at a distance that he is hearing impaired. We are hoping to find something tag or window related that would state or warn of this immediately. We also have this concern (and in his billfold) that if unresponsive due to a wreck or whatever that he can't have MRIs due to the magnets in his head without first removing them.

So far, just having a permit isn't that bad. As 16 approaches, my anxiety heightens when I realize he will not want me to ride with him anymore. 😭

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

11 Years of Hearing

It is hard to believe we are approaching 11 years of hearing with our first born. Brooklyn has been hearing for almost that long as well, but Gage was three and a half years old when his first cochlear implant was turned on. Here's how funny all that noise can be!




We had no idea that the three years of silence or at least minimal hearing aid benefit would never show at age 14. We didn't expect him to catch up so fast but a little boy's determination and hard work paid off. He was released (graduated) from AVT only a year later just when his sister began her journey. These two compliment each other well and they sure have taught me more than I could ever teach them!



I need to post some more videos!!

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)

Heavy Metal

Let's face it, he was heavy metal the minute he picked up his first guitar. Well, not really, but he is certainly cool enough to be...

We finally got the boy in his braces. Sorry to all the Goldenhar patients that don't have a cleft palate, insurance will likely NOT pay for the braces. But that's okay. He is in them, and will be for a while. They only put on the top row this go around and will add the bottoms at a later appointment. He will also add the spacer later as well. He didn't want to put everything in his mouth at once and have the Gman super uncomfortable. The braces hurt bad enough, but nothing a little ibuprofen won't handle.

We will remove the braces in about 6 months temporarily to add composite bonding type additions to the front teeth to make them look more like full pretty teeth. After that is done by his family dentist, we'll go back and put the braces right back on. The bottom row will be moved only slightly forward and then a pediatric bridge will fill in the remaining gap where he has no adult teeth (missing bottom front four). After the boy finishes growing at around age 20, he can decide if he wants an adult (more permanent) bridge or dental implants.

I know it sounds like a lot, and we haven't even been back to see the surgeon about the whole jaw issues, but he too wanted to wait until after age 18 to fix any of that (should we go in that direction). However, by the time the chap is in his early 20s, he'll be so glad he did all of this and I think he'll love the results! We are blessed as always to have a magnificent team helping and guiding us along the way!

 The main concern now is keeping the health of his teeth and progressing in weight gain. Gman is afraid this will set him back but we have loads of ice cream to supplement his lack of biting into food that is just plain uncomfortable and not recommended for a young'un with braces. The anxiety is behind him now and he's getting used to the heavy metal already!

Hovering

On an impromptu stop at a Wal Mart, my mother decided to get G's hair cut. He needed a cut desperately and she was being the good grandmother and getting that little chore out of the way while they were out shopping.

Well, "the girl" my mother called her, sat G down and mother explained to her that once he removes his CIs that he'll hear nothing. Mother proceeded to explain how he wanted his hair trimmed up and assured "the girl" that she'd stand close by in case she needed her to communicate for her while he was off air.

Hmm, "the girl" got really nervous and told my mother she'd have to go sit down and not hover over her while she cut hair....(hover over her?) Yep. As you can imagine, that didn't go over well with G's grandmother. Mom said, "I'm not sitting down until I'm certain you know how he wants his hair cut!"

Needless to say, he got a slight trim and we'll just see that he gets to his regular barber (who is much more understanding and nicer) than some people tend to be. Completely made the Gman uncomfortable as well as mom but they both learned something from their impromptu stop.

Brace Yourself

After years of anticipation, guess who will be getting braces next Saturday?

That's right, this guy! We tried for over a year to get insurance to pay for them since it is medically necessary per the dentists, and orthodontists that we work closely with, BUT since he does not have a cleft palate, we got a big fat no! Goldenhar Syndrome has left his mouth with its share of challenges and we are not sure yet how long he will wear the braces but we'll see how it all goes.

We are moving teeth around to fill in the gaps where no adult teeth are present. Then, the dentist will be able to shape what he does have and after that he'll be ready for dental implants. Since dental implants can't be side by side, we must move teeth around first so that they can be placed sporadically. He has a long road ahead of him with orthodontia but by the time he graduates high school he'll be so glad he did it! ((He is less than excited))

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.

Big Boy

In person, I know he still seems small for 13, but today at his annual appointment to see the CRS team consisting of a nutritionist, social worker, a team of dental experts, etc., they were BLOWN away by his growth spurt. Even more remarkable, this spurt actually happened sometime between May and November because we had other doctor visits in between to do weigh-ins....He has never been above the 5th percentile and today.....25th percentile!!! He has grown nearly 4 inches and gained 19 pounds in that time frame. It sparked their interest in Goldenhar Syndrome and several declared they do some more research on the subject.

The difficult news...medically, he needs lots of Orthodontia. He can't even eat corn on the cob, bite into apples, and lots of other things he don't eat because of his missing/malformed "teeth" called pegs. However, according to the widespread changes in the recent medical insurance coverage....a certain code doesn't fall under the "qualified" category anymore since he has Goldenhar Syndrome and not a cleft palate. His face is crooking more and more and will affect his upper face soon including around his eyes...it is expected the skin of one eye will begin to pull down and around toward the short side (right) as he continues to grow. He still will need dental repairs after Orthodontia and then the jaw surgery to follow in just a few short years to lengthen that short bone.

They are resubmitting paperwork in hopes to get it passed as necessary and not cosmetic for the common crooked teeth. We will sit back, and pray it works this time! We are just glad to have him, and we'll take it one day at a time. He sure is a fun child, and we are Blessed as his parents.

87

Gman had an appointment today to check his height and weight because some of his medication suppresses his appetite. Well, at age 13.5 exactly....he's finally broke the 80 lb mark at a whopping 87 pounds!! We are thrilled! He's 5 ft 2 in and gained 10 lbs in the last 5 months!! His failure to thrive as a baby has come a long way.

Orthodontia was denied by insurance despite his syndrome that is directly responsible for his anomalies. We go see the oral surgeon again in January and see if new paperwork will get it passed through because he not only needs braces, he needs dental implants and possibly jaw surgery as well. I used to think that was so far in his future but at age 13, he's fast approaching the age (17) where they want to address the jaw distraction issue. Only time will tell, but he's a pure-bred champion so we'll cross that bridge when we get there (and with a smile on our faces).

Brooklyn is still doing well. She's almost 11 now and thinks she knows everything. Her grades have improved quite a bit this first report card and she is doing great. She listens to music with typical headphones on her tablet but still uses the speaker phone while using a cellular or other telephone. Gage prefers texting and just doesn't seem too interested in learning to use a phone any differently, though he can hear some using the speaker phone.

Brooklyn's hens are now laying. She started with 18 for the 4H project and gave away 9. Some of her 9 remaining began laying eggs this week (brown ones). We are still waiting on the Easter-eggers to lay which will be pastel colored eggs. She is such a good little "mama" to them. Other than that, we just enjoying mountain/country living and can't believe how Blessed we truly are!

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.

The Latest on Goldenhar Boy

So we spent most of yesterday at his annual appointment that usually takes six hours (but we got lucky and were done in 4). This is where a social worker, nutritionist and several dental experts get together and see some of the special cases to make sure the kids are gaining weight, getting proper nutrition and to discuss future surgical plans. We have been planning for a jaw distraction in his teenage years all along but yesterday the idea was tossed up that a different surgery may be better for him. The main problem is finding a proper bite for him with so many missing and misshapen teeth. We are going to start seeing an orthodontist soon (which was in the plans all along) to see if he can move the teeth he has into some kind of "order" if...and that's a big IF, he has enough bone to work with...there may be some bone grafting needed as well. Any type of mouth surgery isn't the most pleasant of surgeries, so I hate it for the little guy. However, we are truly Blessed. Most Goldenhar patients are in far worse shape as far as the mouth/face goes, so we are very thankful his problems are limited. He finally weighs 70 lbs at (almost age 13) and for that we are thankful as well. He's growing, slowly but growing, so for that we are Blessed also. Love this little fellow, and like my Maw-Maw always said, "God's got His Hands on this one."

On a lighter note, he got to see Ms. Sue Sue the artist again. Even though he may have outgrown her coloring, painting, stenciling on an average day...he loves to see her every year and just sit down and talk with her, paint with her, and truth be known, I think Ms. Sue Sue enjoys it just as much. She always remembers him.

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....

Where are The Blakelys?

I can't believe I haven't updated this blog since June! Such a slacking blogger! The Blakelys are still doing well, thank the good Lord! We have been very prosperous in our garden this summer and canned many-a-vegetable! I have pickles, tomatoes, soup starters, pears, spaghetti sauces, and so much more just packing my storage room shelves for this Fall and Winter. 

Since I have taken on a second job, I basically work full-time hours just at a more random schedule so that I remain home with my family as much as possible...makes for one tired mom, but aren't we all? Gage is doing well (as far as I know) over at the high school...yes, I said it...his middle school is all located inside the high school so he's forced to be even more independent. He has always thrived on independence and as long as he's doing well, he should be just that. He goes back for his yearly visit with the cleft palate clinic in December when we will again discuss his orthodontics, his dental issues, his possible jaw distraction for later down the road and we also meet with his nutritionist...kind of a full yearly exam to make sure he is getting as much nutrition as he can, gaining weight properly, etc. As bad as I hate the six hour appointment, it is loaded with information, so we must go.

Brooklyn is doing well in the classroom also. She is well into the fourth grade, very independent though she does still use the personal FM system. Her teacher is one of the softest spoken people ever, but she hears her very well inside the room, along with the mic. I am in and out of the classroom a lot checking since I do work there as a sub teacher, and she appears to be on task, and not really struggling with anything other than math which she has always found to be a little difficult.

The kids have friends, they are happy, they talk, they talk back sometimes, they get into trouble...but they are The Blakelys...happy to call 'em mine!

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!

The joys of Goldenhar

According to the latest data (collected by me today) Brooklyn has 24 teeth, which is probably normal, she is now nine years old. Gage on the other hand has a total of 19. There are a couple of more that will likely come through but at this point I don't see past 21 teeth in his near future and the ones he does have, aren't actually full healthy teeth. They are called pegs. Despite his wishes to be able to go to the dentist and just walk out with a cleaning, that simply doesn't happen for him. There's always talks of other procedures, other appointments, other doctors, and future surgeries.

This is all a direct result of having been born with Goldenhar Syndrome. This is sometimes referred to as Oculo-Auriculo-Vertebral Spectrum. This spectrum covers several categories of people and those with Goldenhar Syndrome are some of the most severely affected of this particular group (read more here). There is no known cause of this syndrome at this time and it actually took us years to reach this final verdict, having floated between this and CHARGE syndrome and Branchial Arch Syndrome for his first years of life. I can't stress how much easier it is to walk into a doctor's office or E.R. for that matter and name a syndrome rather than say, "They don't know what syndrome he has yet." Even though it is a very rare syndrome, they can at least take a minute, google it if necessary and have an idea of what they are dealing with. Along with severe ear issues, ADHD, and dental problems, he has a dermoid in his eye, which is similar to the skin tags he was born with, only we haven't had this removed since it's unnoticeable at this point. It is much like a skin tag, only under his eyelid, unseen unless he pulls his lid back. (I completely freaked out and went into an all out panic when I discovered it when we were making faces at each other one day when he was a toddler.) He has his vestibular issues we've grown used to and his slow growth.

He hasn't had an easy road and never really will compared to many of his peers, but he does amazingly well. He has friends, he is bright, he is lazy, he speaks well, he listens when he wants to, he misbehaves, in other words, he is "normal". He will still have the jaw distraction surgery after puberty sets in, and we can only pray that nothing unexpected and more serious pops up to catch us off guard. He certainly isn't looking forward to having his jaw bone lengthened and wearing a metal contraption around his face, but we hope that it will help align his teeth better so they don't wear down as quickly. One day, he'll likely wear dental implants for the missing teeth and his mouth will likely look prettier than mine but until then, he'll just have to use what he has, eat softer foods that require less chewing (I'll take his steak!) and he'll continue to grow as big as The Lord meant for him to be.

Even though he awoke with 22 teeth and had three removed by the dentist today, he's in good spirits. I fixed him a large peanut butter/vanilla milkshake for lunch. He had his ears tuned up last week, and his next appointment will be in 6 weeks for another tune-up. Until then, he'll be hunting, playing, inventing, schooling, and being a boy....ahhh, the good life!

why match socks??

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!

He's 60

For years this same art lady has been at G's annual appointment at this clinic in Children's Hospital. He loves seeing her because that means that the four hours he spends in there, won't seem like four hours...and I can't imagine sitting in there that long without the art lady!

This is sort of a review by a team of people including a dentist, surgeon, nutritionist, social worker, etc....that's why it takes so long. So what did we find out?

He's four feet five inches tall and he's 60 pounds!!! Finally. We waited years for him to reach 20, then 40, and now at 11 1/2 years old, he's sixty pounds.

The plan is the same for his mouth. No orthodontics yet because he still has baby teeth in the back, keep up with the dental work (regular cleanings, etc). The dentist will sort of get us by with partials (later on) and whatever temporary magic solutions he has to keep him eating and chewing properly until he reaches age 17 (or there about). We need to let him grow as much as possible before breaking out the big guns...which may include jaw distraction (lengthening one side of his jaw to match the other side), braces, dental implants...a whole lot of work! But for now, we deal with what he's got and be thankful he does have some teeth.

He goes Tuesday for MAPping, which he needs desperately! He is struggling at home to hear/understand what we are saying so I know he has to be struggling at school. He's such a good speech reader though, he manages well...another reason to be thankful.

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.