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Friday, July 10, 2015

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

Tuesday, March 17, 2015

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.
 
 
 

 
























Monday, January 26, 2015

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





Friday, December 12, 2014

The Mom Job

"Being a mom is one of the hardest jobs anyone can do, and it will take you to your very limits sometimes. You cry, you hurt, you try, you fail, you work and you learn. But, you also experience more joy that you thought was possible and feel more love than your heart can contain. Despite all the pain, grief, late nights and early mornings your children put you through, you would do it all again for your children because they are worth it to you."
 
I am going to a retreat at the end of January with an AMAZING blog write, author and mother of a special needs child, Kelle Hampton. The name of it is Enjoying the Small Things. And she, along with two other women are putting on a retreat in Ojai, CA called Spark. 22 women, one room, and a weekend full of story telling, story writing, connecting and learning. It's intimidating for me to go on a trip with twenty something other women I've never met and sleep in the same villa with twenty something people I don't know from Adam. But I am looking forward to expanding my comfort zone. I am looking forward to sharing my experience as a mother, and I am looking forward to raising awareness about Usher Syndrome, something a friend of mine pointed out that I didn't even think about when signing up to go.
 
I felt guilty at first for taking the time away from my family for something that on the fore front looks like only I will benefit from. But I truly believe that the benefits will outweigh the cost of the weekend. I hope to grow in ways that I never imagined I would. I hope to come back a refreshed mom and wife to my kids and my husband.
 
I realize I am saying this with only 2 children tugging at me during their minimal waking hours during the work week, but it's still a hard job. I go from work at the office, to my job as a mom at home. And these days, my boys are attached at my hip. Poor Blair tries to distract them, but when you've got a teething one year old and a 3.5 year old who wants the same attention as his brother, it tends to wear your down. There are so many times when I wonder if I am making the right decisions for my children. And as much as I try to compare my decisions to other moms, it only wears me down more. There's no use in comparing because everyone's household behind closed doors is different. And I'm starting to realize that most of what we go through are normal age appropriate phases. And like my own mom used to say- this too will pass. And it's true. These exhausting nights and early (very very very early) mornings won't last forever. And the things that wear me down the most will probably be the things I miss the most in a few years.
Last weekend was the last bottle Harrison took. Blair and I always said we can't wait until we can just put the baby bottles away for good. And now that we have, I had a little moment of sadness come over me. Harrison turned 1 this past week, and I told Blair the other day that things seem to be getting easier in general with the boys, but I miss my babies. And since the bottles come with the babies, I guess I kind of miss the bottles sometimes as well....
 

 

Wednesday, December 3, 2014

New House/Thanksgiving 2014

The second weekend in November, we were finally able to move into our new house. The boys are really getting into a good routine, and we have some normalcy back in our lives!


 
Harrison has already managed to find his way around with the toy most likely to give any adult a headache after 30 seconds ;)
 
And this is what a typical night in our house looks like these days:
 
 
It's not the best picture, but it's a picture that I've always dreamed of. I'm in a constant state of "be careful, not his head, watch his neck, I SAID NOT HIS HEAD, gentle, NOT THE HEAD!"
But it's been so fun to watch them playing together.
 
 
And before we knew it, it was Thanksgiving week! Blair and I took off the Wednesday before to take the boys to the Children's Museum and Harrison and I ran in the Miles Perret Cancer Services 5K. Poor baby was out at a mile and a half, it was past his bedtime!
 





 
And Thanksgiving Day. I think it's been the best yet. The weather played a huge part, it was absolutely beautiful! Not to cold and not to warm, but perfect boys outside football weather!
 
We are SO unbelievably blessed with two amazing families who come together in such great spirits. Spending the day with our families was truly what made my Thanksgiving so amazing.
 



 
The football commentators ;)
 
I have to say, the amount of things that my family and I have to be thankful for this year is ridiculously overflowing. My special needs son is in a mainstream private school and flourishing like I never dreamed he would. He has friends. F.R.I.E.N.D.S. When he was getting his ears, I was unsure how his classmates and colleagues would react. I was scared they would make fun of him and not befriend him. But I was gladly proven wrong. He has a teacher who welcomed him with open arms, has learned his strengths and weaknesses, and works to make him a better student every single day. That is one of the greatest gifts a mother can be given. Teachers play an amazing role in this world, and they don't get enough credit for raising our children and spending more time with them during the week than we do. He has a speech therapist who takes him on special walks twice a week to pray to Mary and St. Katharine Drexel. That in itself is one of the things I am most grateful for. He has a school family who has also embraced him and his love for dancing and singing. I have received multiple videos from Friday masses at St. Edward's where Hunter is leading the dance moves in front of church completely in his element. My mom and I talk all the time about what Hunter's personality would be like without Cochlear Implants. Without his love for music and talking to other people, it simply would not be what it is today. Not even near it. I know everything in my posts boil down to being grateful for his CIs, and I know we would survive without them. But it would be a longer and harder journey on us all.
 
And as much as I hate Usher Syndrome and everything it stands for, I am grateful for my Usher Syndrome family. Everyone has a cross to carry, and with our cross comes an amazing support system. People who are carrying the cross as us, walking in the same shoes as us, and all working towards a brighter future for our children. I am so grateful for the strangers, the friends, and our family members who are helping us carry our cross, because without them, Blair and I would not have the strength to do it all. For you all, we are so very grateful.
 
And my immediate family. For my two beautiful children and my better half, my husband. They are my world. Harrison keeps me on my toes ALL waking hours and never lets me take my eye off of him. But he always turns around with a smile to light up the room (and normally some foreign object in his mouth :/ ). For our Faucheaux Family Fun days, and for our "everyone woke up on the wrong side of the bed" days, we are in it together, and we always make it to the other side together. I often think about the saying- what if you woke up with only the things you thanked God for the night before? And I thank God for you 3, each and every night. You all make me laugh so often, sometimes make me cry, but ALWAYS make me realize how lucky I am to be your mama and wife.
 
I hope everyone has something to be thankful for this holiday season. Thank you all for following our journey!