My love/hate relationship with Music

This is one of those times where I'm hesitant to write how I really feel. My heart is beating fast, but I've been having this nagging feeling just to get it out there. So here it is.

My son, Hunter, who was born deaf, LOOOOOOOOOOOOOOOOOVES music. And when I say loves it, I mean when he's pulled a typical 4 year old thing- like talk back to his mama, we punish him from the phone/TV/iPad, which 95% of the time means iTunes music or YouTube videos/songs. Isn't that what we're supposed to do- take away the things they want the most so that they think twice next time before talking back?

Yep. This mama whose son was born deaf but now hears and LOOOOOOOOOOOOVES music, punishes her son from listening to music. And I complain about it. About the amount of music we have to listen to, how loud it is, how annoying it is and how we have to listen to the same handful of songs over and over and over and over again. (Although the dancing aspect is pretty entertaining).

But if you were a bug on the wall in my house, you may agree that the extent to which we listen to music and the volume that it HAS to be on, is a little absurd. It's the first thing he asks for when he gets home from school and the last thing he's doing before bedtime routines. Not every.single.night. But a majority of the time. Like when it's raining outside or 100 degrees. And on the nights when he is playing outside, the music somehow mysteriously makes its way outside as well! We go to Nana and Pappy's and he's requesting the speaker that connects to the iPad right when we walk in. We go to Maw Maw's and he's trying to fix the cassette player that we used to listen to when we lived with her a year ago (because this obsession is not new!)

I recently read a post by Kelle Hampton over at Enjoying the Small Things where she addressed her daughter Nella's love for Barbie dolls. She said she was never a huge fan, never had them growing up, but that Nella (who was born with DS) is obsessed. But she said the Barbies create some sort of magic for Nella. And through the Barbies, she's heard voices she didn't know were Nella's, phrases she didn't know she could say, and she has observed her deep understanding of conversation. And in some weird way, I compared that story to Hunter's love of music. It's brings out so.much.life. and personality that would never exist (or would possibly exist but be very much downplayed) if he couldn't hear. We wonder all the time what his personality would be like if he couldn't hear. If sign language was his only language. Where would we be today?

Definitely not at St. Edward School. Possibly not even in New Iberia. Possibly not in Kindergym, Soccer or T-Ball. And absolutely not sitting in our living room night after night watching a dance party happen right there in front of us. Watching the life that music brings to my son who can now hear and communicate and speak like he was never born deaf.

A friend of mine recently sent me an article about using the words "I get to" instead of "I have to". And the overall concept is to be grateful that we "get to" do things that we may have never been able to do if it weren't for tiny miracles (like babies and cochlear implants). Because not everyone is given the same opportunities we sometimes take for granted.

I truly appreciate the meaning of the article, and I think twice now when I go to complain about pretty much anything when it comes to my children. I absolutely understand how abundantly blessed I am. I go to bed every night after charging Hunter's batteries for his Cochlear Implants, and I wake up every morning to put them back on his ears. I'm constantly reminded how lucky Hunter is that he can hear. But I can't say it's completely stopped me from complaining.
I still complain that my 4 year old son talks back, that my 20 month old laughs at me when I tell him to do something, and that my husband wants to play golf every weekend. I like to look at my complaints more as comical stories, because a majority of the time I'm laughing (if I'm not crying, ha!).

But I also feel like if we didn't share our struggles and stories, so many of us would feel so alone. As women in general, we were wired to share, to relate, to listen and to accept each other. The times I feel the most "normal" (whatever that may be) is when a friend says, I've been there, done that.. you'll get through it. And if I can't be real with how I feel, then it's not worth sharing at all.

So to sum it all up, I'm a typical mom, rolling with the punches of every day life. And ever so grateful to be "typical" and dealing with mainly just the "norm" that comes with two kids. And it's not always rainbows and unicorns around my house. But (except for a future without Usher Syndrome) I wouldn't have it any other way.

Here are a few bonuses :)

Own the Equinox #USHEQX #Sept19

So this little thing that I'm a part of called the Usher Syndrome Coalition is putting together this little fundraiser for this little (what the professionals like to call "orphan") disease. Orphan is such a sad word, I wasn't the least bit impressed when I heard that Usher Syndrome is an orphan disease. But I guess no one consulted me.

Running has never really been "my thing" although, on various occasions, I have tried to make it just that. I'll run a 5K here and there (dying by the end) for various causes, and when I was in a boot camp after I had Hunter, our trainer actually had us up to 7 miles on the weekends. That was pure craziness and I haven't even made it to the 4 mile mark since that time when Hunter was 9 months old. I don't run because I enjoy it, I run because it's a form of exercise that doesn't require much. No weights, no mats, no instructors... just the open road and good music.

 

As Mark stated in a recent blog post, the Usher Syndrome community kept saying- We need a global Usher Syndrome Awareness Day. And it's been done. It will be the third Saturday in September, every year, beginning this year, until Usher Syndrome is history and Usher Syndrome Awareness Day becomes a simple reminder of the great things an energized community can accomplish!

 

Since Day 1, our entire family has been trying to make Usher Syndrome common knowledge. We have been spreading the word, educating others, and trying to make it a priority.

And I'm excited to say that my priority every day for the next (now 24) days is my mile-a-thon.

The goal of this fundraiser isn't even to fundraise (although every penny counts)... it's to SPREAD.THE.WORD.

 

So if you want to be a part of this soon to be revolution, if you want to be a part of the cure- just follow our journey. Talk about our journey. Spread our purpose far and wide. SHARE our pictures, SHARE our posts. You never know who might see your two second effort. Or who might overhear your conversation about this #OwnTheEquinox thing you're friend of a friend of a friend is taking part in for her son.

 

We don't want your money (we need it) but what we do want, and want the most-- Is your support. Your words are more valuable than your money. Spread the word. Spread awareness.

Be the cure.

 

Below are my recent instagram posts (username: ebfoeshay)

Feel free to follow me, repost, or follow on our Angelic Ears and Eyes facebook page.

I will start updating that page with this post and my daily posts from here until September 19th. And if you don't want to see so many posts, feel free to unfollow until after the run! :)

 

Day 1 (New Iberia, LA): My mile-a-thon journey to 26.2 by September 19th. And I promised I would document my daily runs. So here we go @ushcoalition #OwnTheEquinox #USHEQX #ushfamily

 

 

Day 2 (The Gym of New Iberia, LA): I really do despise running. But hey, I'm here. #USHEQX #OwnTheEquinox #ushfamily @ushcoalition

 

And here is the link if you think man, I really would love to contribute a little because I know it would go a long way. Click here:

https://usher-syndromeorg.presencehost.net/take-action/own-the-equinox-fundraisers/elise-faucheaux.html

 

And for those of you in the Lafayette area who are interested, we will be joining Cece Hebert's team (because her parents are way more on top of this whole thing than I am!) on September 19th in Girouard Park to complete the last 1.2 miles together. Contact me for more details. Anyone can join for free. Walk/run/bike/jump rope... bring your kids, bring your dog, bring your grandmaw.

 

Love-

The Faucheaux Family

 

7th Annual Usher Coalition Family Conference

The man in the picture below, Mark Dunning, Chairman of the Usher Coalition I might add, thinks and truly believes he is just a regular guy.

 

 

I hope one day he realizes that he is FAR FAR FAR more than just a regular guy. He says the only thing that sets him apart is that he has a daughter with Usher Syndrome. Which couldn't be further from the truth.

He may, at one time, have been a regular guy. But he was a regular guy with an extraordinary vision, a lot of determination, and a caring heart. He set out starting the Decibels Foundation, which lead to The Usher Syndrome Coalition, (anyone recognize that face on the Homepage?) which has close to 1,000 members from countries far and wide. Plus he has a full-time job. And instead of vacations to the beach, he uses his vacations to visit research facilities, and to speak on behalf of the people with Usher Syndrome, spreading awareness, educating others about the advancements in treatments and clinical trials, and offering support and resources to people trying to cope with the emotional and physical effects from Usher Syndrome.

The fist time I met Mark in person was at the Usher Syndrome Coalition's Family Conference in St. Louis just 2 months after we got Hunter's Usher 1C diagnosis. After I introduced myself, he remembered our email correspondence and asked how old Hunter was. I said 16 months, and I will never forget his response-- "You guys have nothing to worry about, he won't even be affected by the vision loss". I think his response was a combination of his true optimism towards a cure for Usher Syndrome, and a deep faith and hope that if he continues repeating it to himself and others, that it will eventually come true. Although we aren't 'blind' to the fact that he's already 4 years old and there are no clinical trials in place for Usher 1C, I know that there are numerous people out there who are working day in and day out as far as humanly possible, to make it happen.

Mark recently wrote a blog post that really touched me. As I'm sure it did the entire Usher community. He isn't just a regular guy. He's a talented and touching writer, and an inspiration who it at the forefront of this grass roots effort to find a cure. Don't worry Mark, that's what we all want for Hunter... as well as every individual affected by Usher Syndrome around the world.

Since the family conference was in New Orleans this year, we had the pleasure of bringing both of our boys and having some of family members attend as well. My Aunt Kathleen Blanco, former Governor of LA gave the welcome speech, which was very inspiring to everyone. My parents, Blair's mom and his Aunt, Uncle and cousin were there as well.

And as you can see below, Hunter was VERY proud to be on the Coalition's new banner! Our photographer, Kent Fleming, really does an amazing job at capturing the most captivating shots!

We are so blessed with such a supportive network.

Thank you to all of you who supported our conference in so many various ways. Your kind words, your donations, your thoughts and prayers are always appreciated.

 

Elise

 

Perfect

I've grown to hate the word perfect. Since the day Hunter was born, the word perfect made me cringe. People all around me were having babies, and each.and.every.one. of them was just.so.perfect. Except for mine. Mine wasn't perfect, at least not in the formal definition: "having all the required or desirable elements, qualities, or characteristics; as good as it is possible to be."
As little as my mind was during my mid-twenties, it took almost a handful of years to be able to accept the word perfect back into my vocabulary. Even a year and a half ago, when Harrison was born, I never ever ever used the word perfect. My thinking was that I didn't want to offend anyone who had a baby with a disability who wasn't able to describe their tiny miracle with an adjective like 'perfect'. Not that people were offending me by using the word, I was quietly taking offense against myself (if that even makes sense) when other people described their babies as perfect.

But if you look carefully at the definition of perfect, the last leg of it states "as good as it is possible to be", and that's the part that I wasn't looking into enough.
Hunter was born a healthy baby with all of his limbs, that's as good as possible. All we had really hoped for. But in my tiny little head, he still just wasn't fit for the word perfect.

What a shame for me to feel that way about my son. Why couldn't I ever call him perfect to my family and friends? Because he was perfect to us. He was perfectly born to the perfect family to fit HIS perfectly planned out needs.
Blair and I aren't perfect. We are very far from it. But we are perfect for each other, and we are perfect for Hunter. And by perfect, I mean perfectly learning from our everyday mistakes, perfectly trying to improve ourselves, our habits, our daily lives and perfectly loving our kids to the best of our ability.

Every day I go around noticing imperfections about myself. My hair, my body, my diet, my attitude, my work, my memory, my love for God, my organization (or lack thereof). And then one day, I saw Hunter taking pictures with my phone, and I heard him whisper, "Oh no, that one is not perfect" and I stopped in my tracks. I had no idea where he had heard the word perfect (except for maybe if he was inside my head) and I wasn't even sure he knew what it meant. But I decided from that day forward that I needed to give the word perfect another chance by giving it another meaning. And that new meaning for me is being perfectly created in the image and likeness of God. Because in God's eyes, we are all perfect. Flaws, wrinkles, weaknesses and all. We were created uniquely perfect, and that's good enough for Him.

I don't want my kids to grow up comparing themselves to the rest of the world and thinking that everything they say and do and see has to be perfect. I just want them to know that they were born that way. And when I look at Hunter's baby pictures, I know he was perfect, even though I wasn't willing to admit it. I know he was created perfectly by God and placed into the family that could perfectly give him what he needed (with our imperfections as well.)

So welcome back to my vocabulary, perfect. You are beautiful and allowable in my world again.

Ps. I haven't gotten that perfect family of 4 shot lately because half the time my 4 year old is hoarding my phone or my 1 year old has "hidden" it somewhere, so here are a few others (photobomber included)

Annual CI Mapping & More Updates

We traveled to New Orleans a few months ago for Hunter's annual mapping update and to visit a retinal specialist who spoke at the Usher Symposium in Baton Rouge back in October. I apologize it's taken me so long to post an update, but the update is boring. And I have to say, I am a big fan of boring when it comes to these kinds of things. We don't want any road blocks thrown our way, we don't want any unusual results or problems. We LOVE boring, "he's doing very well, keep up what you've been doing and see you back in a year". AMEN! Thank you baby Jesus!

Here are two videos from his mapping appointments. His ears are hooked up to the computer and when he hears a beep, he has to put the banana in the bucket. It's interesting to watch and learn about. I say interesting, but I should say miraculous!

 

 

 

The retinal specialist sees a good number of Usher Syndrome patients, including children, and we wanted to be a part of her practice so that we can start seeing her on an annual basis, on top of his normal ophthalmologist. She took lots of pictures, looked in his eyes, and said she also sees the US indications, but that overall the eye health looks better than others his age. Amen! Thank you baby Jesus! She was amazing, and we are lucky to be able to see her. 

And let's just give the Aqua+ accessory another shout out, because it makes swimming lessons a breeze! Hunter is acting like a fish and really learning how to swim well by himself!

Hunter also played his first season of T-ball this past spring. We found a helmet that we were able to cut the padding out of so that his ears could fit without too much trouble, and although things started out a little rough, he was doing SO well by the end of the season. He even started running in the right direction by about the 5th game :) See below. My boy, playing t-ball with his friends. He can do whatever he puts his mind to!

 

 

And of course his biggest fan was always in tow...

 

 

Here is a picture from Hunter's 3rd hearing birthday!

 

 

And the following are pictures from Hunter's LAST day of Pre K 3! It's crazy how much he grew during this school year, inside and out :)

 

 

 

 

The New Face of Usher Syndrome

When we started this Usher Syndrome journey with Hunter, we said we were going to give Usher Syndrome a new definition, a new face, a new hope for everyone affected by it.
Although the time I spend working with the Coalition and others affected by US is only a very small amount of the time I WISH I could put forth, everyone's efforts are definitely coming together, no matter how big or small.

I am in New Orleans this weekend for the Usher Syndrome Family Conference, and as I logged onto the Usher Coalition's website, I see my baby's face on the home page. A sweet sweet face, with such an innocent look. Big blue eyes that have been complimented since day 1. And he has no idea that his face is being viewed all over the world. Various countries, thousands of people, old and young. He has no idea that his diagnosis gave his mama a new purpose for living. Something to fight for, something to win, a story to share and relate and laugh and cry with. I don't have much experience with this diagnosis just yet, being the Hunter is only 4. But I feel like I've learned more about my family, myself, my friends, my support systems, and about life in general in the past 4 years than I did in my first 27 years of living. As my mom always says about herself, I'm a work in progress, but constantly striving to improve. Finding beauty in the unexpected. Finding joy in our journey to Holland. Learning that as lonely as we may feel at times, there's always someone out there who is feeling the exact same way, whether they share it on social media or not.
The people we will gather with at the family conference tomorrow all have one common goal. One common purpose and that's why they travel from near and far to be here. It's nothing my close friends will ever understand, but that's ok. It's nothing you can relate to until you're dealt the same cards. To be brutally honest, it's freaking scary at times. At times,  I let my fear of the unknown get the best of me. But this weekend, it's a positive outlook into what potential cures are on the cusp. It's a heart-warming gathering that puts our perspectives back into place. That makes us feel a little less alone.

That little boy in the picture has no real idea of what he's coming to New Orleans for. He's mainly concerned with the exciting opportunity to be able to sleep in a hotel for two nights :)
One day he will get it, one day he will realize that his face is the new face to Usher Syndrome. He's going to move mountains, and with great faith and hope, his future will be the new definition of what a life with Usher Syndrome looks like.

Warmly,
Elise

Ode to Walt Disney World - 2015

Our family went to Disney World in February as part of the Cochlear Celebration Convention. I have started a separate post about the convention, but there was SO much going on at Disney that I figured a little poem would suffice to sum up the trip. (Thanks to Annie Flavin for the poetry inspiration) When people ask me how it went with two little ones, I say it was like childbirth-- painful yet exciting and wonderful. And even though part of you just wants to be home, when you get home you forget all of the painful parts and want to go back and do it all over again :)

 

Ode to Walt Disney World

 

Master packing lists that never fail

Yet still forgetting things utilizing overnight mail

 

Chilly early mornings & late nights

Cranky parents children and spousal sibling fights

 

Buses, planes & monorails

Constant excitement that never fails

 

Hotel rooms, sand pits & a swimming pool

The most basic things were oh so cool

 

Mickey Mouse, Donald Duck, Elsa & Tinkerbell

Parades we are familiar with all too well

 

Naps in strollers & Nemo shows

A luau dinner and swords that glow

 

Oh that ittle bitty Harrison

Can't turn away for one split second

 

Busted noses and busted lips

Lost shoes resulting in shopping trips

 

Rollercoasters, face painting & flying dumbo

Hunter still calls it the "flying gumbo"

 

Never ending fireworks that lit up the sky

Now I see why all their prices are so darn high

 

Are we done yet Hunter? Can we please go now?

Not yet Mama, look Mama, Wow!

 

Disney food, oh the food

Nothing else put us all in a better mood

 

And until next time, forgetting all the meltdowns & fights,

Printing out our memories & counting down the nights.

 

 

 

 



Catholic Schools Week 2015

Today is one of the greatest weeks at St. Edward School. It's a celebratory week of all Catholic Schools around the nation. And I think it's very deserving to be celebrated.
For those of you who have been following me for a while now, you know that I went to St. Edward School K-3rd and that St. Katharine Drexel is the founder. My brother went there as well as many of my cousins. We attended mass every Friday morning as a school, rain or shine. Some of my most memorable events from my childhood involve events held through the school, and some of my bridesmaids at my wedding and still to this day, some of the closest friends I have, I met while I was at St. Edward. After graduating 3rd grade from St. Edward, I attended Catholic High School in New Iberia from 4th-12th grade. Now that I am back living in New Iberia, I get a relaxed feeling knowing my kids will be brought up in a quaint town with a solid Catholic education.

Well someone shared a blog post written by a dad about his two young daughters who attend a Catholic school, and I just thought sharing the actual article would let it speak for itself:

Author’s Note: For Catholic Schools Week, I’ve been asked to speak to my parish congregation about why, as parents, we chose to send our kids to Catholic school. While my testimony spoke about our Catholic school specifically, I have changed the name to reflect what I think is common to most Catholic schools. Here was my answer. 

It was years ago, but it seems as clear as if it were yesterday. I was talking with my dad when he stopped me short. He looked me square in the eyes and simply, but firmly said,

“I’m proud of what you do, but I love you for who you are. Are you listening? I’m proud of what you do, but I love you for who you are.”

I don’t recall the circumstances that prompted him to say that or my sheepish response, but I’ll never forget how special it made me feel.

This wasn’t the first time my dad said this. Nor would it be the last. Growing up, my parents made abundantly clear that to get anywhere in life you need to set clear goals, have a strong work ethic and be honest with God and yourself. And being raised by a school superintendent, English teacher and two sisters aspiring to become teachers, you can only guess the value we placed on education. So between my home and my local public school, there were high expectations to work hard, learn and succeed. But that was not all.

I was taught that while accomplishments matter and success is important, achievement uninformed by faith, purpose, & character will ultimately be hollow. As my dad said, “It’s not just about what you do, it’s about who you are.” It was a philosophy I have never forgotten and still value deeply.

Well, time has passed. I am now married with two young wonderful children. And three years ago, we had to make an important decision. In the west Metro, arguably a hub of the finest public and private school education in the country, where would we send our daughters? Instead of schools immersing students in language or the arts, we opted for a different type of immersion: Catholic Immersion. We chose to send our girls to the Catholic school here. And we couldn’t be more satisfied.

Now, I can recite for you the data about the robust performance of our Catholic school students on standardized tests or the enviable student-teacher ratio. I could impress you with the diverse class offerings in art, music and Spanish or the deeply skilled and compassionate staff. I could even dazzle you with the Smart Board technology, iPad utilization and cutting edge internet based teaching tools. I could… but that vital data is proudly displayed on the website, in the brochures or available on a school tour. Instead, let me share with you the true spirit of my daughters’ Catholic School:

At my daughters’ Catholic school,

- a child once shy to speak much in class is soon beaming while reading prayer intentions at the School Mass

- you may receive a smiling email from a teacher telling you your daughter looked up at him and said, “God bless you” because he picked her favorite game in gym class.

- you find parents who tow a tractor hundreds of miles simply to pull a school float in the local parade.

At my daughters’ Catholic school,

- you may find your child spontaneously apologizing at the end of the day for something she said at the beginning of the day simply because of what she learned from the priest’s homily at the School Mass

- you encounter staff, parents and children enthusiastically showing up to pack food for the hungry, rake leaves for the elderly and plant pinwheels for peace

At my daughters’ Catholic school,

- teachers approach you about the right book or exercise for your child, the principal knows your kids and cheers them on by name, and the priest offers wise support at just the right time.

- you may find a child at home thoughtlessly humming a hymn or telling you an interesting fact about St. Benedict, or at the school Talent Show telling corny jokes or belting out Frozen’s “Let It Go”

- staff, parents and students pray for and rally around a spouse who has been sick, a baby soon to be born, or a sixth grader saying goodbye

You see, our Catholic school is more than just a school, it is a deeply invested community. A community. And in a world grown increasingly cold and harsh, a community of faith and warmth is an immeasurably important springboard in these young kids lives. And in ours. Undoubtedly, this school prepares the mind. But by God, it prepares the soul as well. To paraphrase my dad, “Catholic schools are proud of what our kids do, but love them for who they are.”
If you are considering a school community for your child that is rich in academics and rooted in faith, please consider calling, visiting or touring a Catholic school. Believe me, you won’t be disappointed.


Read more: http://www.patheos.com/blogs/acatholicthinker/2015/01/why-my-kids-go-to-catholic-school/#ixzz3Pxbg72AO

The week before Hunter's surgery, the principal at St. Edward, who is still there, contacted us to let us know that the entire school had been praying for Hunter and his upcoming surgery. I posted about it here and will share the link again so that you can see the video if you haven't been following that long. It STILL brings me to tears when I watch it. It was amazing. And the teacher who started it all, is now Hunter's Pre K 3 teacher. The kids with their hands in the air, the priest and his heartfelt blessing, it brought me to tears the moment I got up there.
http://angelicears.blogspot.com/2012/04/anchors.html

I could not agree more with the paraphrase, "Catholic schools are proud of what our kids do, but love them for who they are."
Most of you know that I was a nervous wreck to put Hunter in school. I was scared they wouldn't be able to work his ears, I was scared people would point and laugh, I was scared he would feel different and worst of all, I was scared he would be treated differently. These were all MY fears. But this couldn't be further from the truth. After my first couple of weeks emailing the teacher and principal who so openly addressed every concern I had, I had to just let go. And when I tell you, he LOVES school, that's an understatement. When school was closed for a teacher retreat a few Fridays ago, he asked me about 72 times to go.
I have gotten a handful of videos of Hunter dancing at mass on Fridays, in the front of church, right where he had his special blessing. In the exact same spot that we stood almost 3 years ago. That kid loves.to.dance. And I told the teacher to reel him back in if need be, but she said oh no, he's praising the Lord and that's exactly what we want him to do! I wish I could post a video of him dancing but there are other kids in the background and I don't want to publish the video without their permission, and it would just be too much! Here is one that I took from a mass, zoomed in and cropped all of the other kids out because I absolutely love it. That smile and those hands, that's my happy boy. That's my comfortable boy, feeling right at home. The exact look I think of every time I think of St. Edward School.

 

I got an email from Hunter's speech therapist at school one day with the following:

 

 What more could a worried mother ask for? They love him for him. They love his passion for dancing and singing, they love his uniqueness and they embrace him just like our family does. I wouldn't trade his school family for anything!

*permission was granted by these classmates' parents :)

 

And last but not least, this photo was taken with a few of the students from St. Edward and Catholic High in New Iberia. A banner was made to be hung in the cafeteria and it is in the Acadiana Lifestlyle Magazine. Little bitty Hunter right in the middle :)

 

 

Happy Catholic Schools Week!

Warmly,
Elise