Ush Connections Conference 2017

I can't believe it, it's been 365 days, TODAY, since I have written on the blog!

Since that time, we hosted our first race under Ush One See, which was a huge success! We are in full swing planning our second race, which will be held on September 16, 2017. And we even created a website, www.ushonesee.com. Check it out for more info on the upcoming event!

But what I wanted to write about was the Ush Connections Conference, which was held in Chicago this past weekend. Hunter and I had the wonderful opportunity to attend, and I am so grateful to the Usher Syndrome Coalition for hosting this event!

There were two researchers who spoke about Gene Replacement Therapy and Stem Cell Therapy. The first, Edwin M. Stone, is the Director of the Stephen A. Wynn Institute for Vision Research at the University of Iowa (www.wivr.uiowa.edu). He is well known for his work in defining the genetic basis of blinding eye diseases: ranging from two of the most common causes of blindness, macular degeneration and glaucoma, to much rarer conditions like retinitis pigmentosa and Usher syndrome. Dr. Stone has been very active in removing the technical, legal and financial barriers between genetic discoveries and the patients who could benefit from them. He founded the Carver Nonprofit Genetic Testing Laboratory at the University of Iowa that provides low cost genetic tests for more than 20 different inherited eye diseases to patients in more than 60 countries. His current interest is in developing affordable gene- and stem-cell-based treatments for all molecular forms of inherited retinal disease.

Dr. Ed Stone started off the day by telling everyone that "My job is to increase the hopefulness of everyone here by at least 100%. And for everyone wanting to ask the same question, which is WHEN: As soon as humanly possible. We are going to do everything we can every single day, as if it were our own children with Usher Syndrome."

What a wonderful thing to hear, as a parent of a child with Usher Syndrome. I am still in awe of these researchers who dedicate their lives to science and medicine, for reasons we may not even know or  understand, our children are at the forefront of their studies. What more could we ask for?

Also presenting that day was Dr. Ian Han. Dr. Han is Assistant Professor of Ophthalmology in the Wynn Institute for Vision Research at the University of Iowa, Carver College of Medicine. Dr. Han’s research involves translational models of gene and stem cell therapy for inherited eye disease, as well as advanced retinal imaging for improved understanding of vitreoretinal and choroidal pathology.

Both went into detail about gene therapy and stem cell therapy, neither of which I am educated enough to even begin educating others about. But I will give you my best at what I took away from the day. (with a little help from google of course)

Gene therapy is designed to introduce genetic material into cells to compensate for abnormal genes to make a beneficial protein. If a mutated gene causes a necessary protein to be faulty or missing, gene therapy may be able to introduce a normal copy of the gene to restore the function of the protein. A vector is a carrier that is genetically engineered to deliver the gene. Certain viruses are used as vectors because they can deliver the new gene by infecting the cell. Those viruses are modified so that they can't cause disease when used in people. Some types of virus integrate their genetic material (including the new gene) into a chromosome in the human cell. If treatment is successful, the new gene will make a functional protein. There are various challenged associated with this process, such as targeting the delivered genes to particular cells and ensuring that new genes are precisely controlled by the body. But in my eyes, it's a very promising approach to those who still have a decent amount of vision. WHEN? Hopefully sooner than later, I wish I had an answer to this question.

Stem cell therapy is aimed at restoring sight to those who have lost too much vision to really benefit from gene therapy. Stem cell therapy converts skin cells into induced pluripotent stem cells (iPSCs). These stem cells are then converted into retinal tissue and transplanted to those in the eyes that are in late stages of retinal degeneration. The limiting factor to this is that testing for safety takes time, as with all things. It's all still a work in progress!

Both of these treatments are very promising and are progressing on a weekly basis. As with all things, these are new techniques to treat retinitis pigmentosa, and are not yet perfected. But their response to all road blocks is simple "we will fix it".

Ush One See funded a natural family history study at LSU - NOLA to support Dr. Jennifer Lentz's work with drug therapy treatments, and the wonderful thing is, this study is needed for any form of treatment. So we are helping to advance every avenue of treatment out there!

There was one question from an individual with Usher Syndrome during the researcher Q&A that really caught my attention. And she wanted to know why her white cane, which she uses to navigate in life, doesn't have more assistive technology? She wanted to know why cars could detect when another car was stopping in order to prevent a crash, yet the only thing she has to navigate herself through the street with is a white cane. No lights, no vibrations, no technology that seems to be everywhere else these days. And to our delight, they said they are working on these kinds of things for the visually impaired, such as a vest with sensors that could alert someone if they were about to run into something, such as sending vibrations through the vest. HOW AMAZING IS THAT?!


Thank you, again, to the Usher Syndrome Coalition for bringing our Usher Family together again and for all of the information we received from the presentations.
If there's anything anyone can do to help advance these treatments on a day to day basis, it's tell our story. Create awareness. You have a connection that you think could benefit us? Let us know. It takes time, it takes money, it takes connections and it takes persistence. Thank you all, for choosing to BE THE CURE!

Introducing.....USH ONE SEE, INC.

It's been a while, hasn't it? Well we have had lots going on down south, one of those things being a newly created foundation, Ush One See, Inc. (A play on the Type 1C of Usher Syndrome that Hunter has). Our goal is to raise awareness and eventually raise funds for a cure for the vision loss aspect of Usher Syndrome. Because IT'S OUT THERE! It's so close I can feel it! See below for more information about our upcoming event!

 

July 11, 2016

 

Can you imagine… your 5 year old son’s prognosis of a rare genetic “orphan disease” reveals the fact that he will start losing his night vision as early as age 7 or 8. Can you imagine… having to tell your son that he was born with Usher Syndrome, through no fault of his own, and that as early as his teenage years, this disease could rob him of his ability to see.   Can you imagine… you, your child, your friend, someone you love having to take a class to learn brail and how to use a white cane, before he hits adulthood?

I can.

I can because on March 12, 2011, my son, Hunter, was born with Usher Syndrome, the world’s leading combined deaf/blind disease. My husband and I soon learned that we are both carriers of this French/Acadian strand of the gene (Type 1C), and we had passed it on to our first born son.

Two weeks after Hunter’s first birthday he underwent surgery and got bilateral cochlear implants to correct the deafness aspect of Usher Syndrome. Today, he is a fully hearing, speaking and thriving 5 year old in a mainstream school and loving life to the fullest extent.

Since Hunter’s diagnosis in May 2012, I have wanted to start a foundation to educate people, create awareness about Usher Syndrome, and to assist in finding a cure for this debilitating prognosis. So here we are, 4 years later and this dream of mine has become a reality, as well as a reality check. Time is ticking, and there’s no stopping it. This is a grass roots effort to educate others on this disease that affects the people of Acadiana, the people right here surrounding us, in a heartbreaking way. Most people have never heard of Usher Syndrome, but 2 in every 20 true Acadians walk around with the French/Acadian gene of Usher Syndrome, just like my husband and me.

We have started a federally recognized 501(c)3 non-profit, Ush One See, Inc., breaking the silence to see the future. Not only for our son, but for multitudes of other Acadians who were born with this condition. And they’re out there. They’re in our schools and our churches, in our local grocery stores and the neighborhood gyms. Through Ush One See, we pledge the highest level of fiscal integrity. With funds raised, we’ll cover event expenses and then put every last cent towards research for a cure of the vision loss aspect of Usher Syndrome. 

On World Usher Syndrome Awareness Day, September 17, 2016, our first event, Fight for Sight 5K/10K, will be held at the River Ranch Town Square. We will run in honor of Hunter and every other individual diagnosed with Usher Syndrome. We will fight to finish strong, as we have done for the past 5 years, accepting nothing less. I want Hunter to know that we are not going down without a fight, for his sight and the sight of everyone affected by this dreadful disease.

 

 

We know the state of the economy today, and we realize there are many causes that need your support. But this is your formal invitation to join us as we rally together to create awareness in our community about a condition that affects so many of our own. There are various ways to show your support, including sponsorships, participating in the run, in-kind donations, and volunteering. And if nothing else, I hope this letter has served the purpose of educating you a little more about the leading deaf/blind disease in the world. Please share what you have learned today.

For more information on our event, see attached flyer and sponsorship information, visit our Fight for Sight 5K/10K event on Facebook, email us at ushonesee@gmail.com or call us at 337-523-0519. You may also register for the race, donate, or volunteer directly at secure.cajuntiming.com.

Can you imagine…. Being the parent of the blind man that Jesus healed? Can you imagine…. Being part of the reason we will one day be able to give sight to the visually impaired? Can you imagine… being part of a revolution? This revolution that finds a cure could lead to unimaginable discoveries in healthcare.

Can you imagine the possibilities when the people of Acadiana rally together for the sake of their own?

I can.

I’ve seen it happen. And I know it will happen again for our family, our neighbors and our friends with potential blindness in their future.

 

Warmly,

Elise Babineaux Faucheaux

 

President

Ush One See, Inc.

Annual Audiologist & Retinal Specialist Visit

Hi there, hope all of you are doing well.   I wanted to give you a short up-date  on Hunter's  (who turned 5 on March 12) latest trip to New Orleans for a check up of his cochlear implants and also an eye appointment with the retina specialist, Dr. Maria Renoso, both in New Orleans.

 

Our appointment at Ochsner with our audiologist to map his cochlear implants went great.  He is doing very well with them and except for some minor issues now (we have had to replace a coil or two, a few wires, and a processor a few, no well several times now) and then, he is having no problems.  He hears and speaks very well and we are so grateful for that.  And sings/dances, I have to mention that.  It rules our household where he is concerned, I believe I have said this a time or five before!  So much to be thankful for, we are blessed. The video below shows him repeating words and he can hear sounds as low as 15 decibels which is fantastic! Notice in the video her voice gets lower and lower.

 

 

 

He is playing T-ball again this year and is doing really well with that, also.  His balance is better than last year out there, and he hits the ball and throws well and in general is having a good time, which is all that counts, right?

 

 

 

 

His eye appointment showed that his eyes were stable from last year, another thing to be grateful for.  I asked Dr. Renoso some questions about the eyes and what to expect and she told me in another year or two they will be able to do a field of vision test. When he's a little holder and can sit still for a little longer. She said if he does start to have any night vision loss, he possibly retreat from going outside at dusk. But for now, we have no worries in the near future :)

 

Blair and I ran in the Zydeco Half Marathon a month ago and sported our Own the Equinox Team Hunter shirts... and I actually got a comment from a fellow runner during the race that it was a great cause... and I couldn't agree more! If I look like death, it's because I felt like death! LOL

 

 

 

I know this is short, but I just wanted to let you all know that we are doing fine, we love and appreciate each and every one of you.  I will be working this year to form a non-profit so that we can get donations for Usher Syndrome research.  More to come on that topic at a later date.

 

Let's get back to this 5 year old looks 10 years old over night!

 

 

Hunter - 5 Years Old

 

 

 

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.