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....

 

 

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!

 

 

Halloween 2014

I know I am way past my Halloween picture deadline, but now that I am getting a chance to catch up I will do a few separate posts.

 

(everything goes STRAIGHT into his mouth)

I Heart Fall!

Wow, I just realized it's been 2 months since my school post about Hunter starting Pre K 3. I always think about writing on the blog and know I need to catch up, but things have been non-stop since school started. Our new house is a little less than a month away, so I will finally have my feet back on the ground again once we are in.

Hunter has been doing wonderfully at St. Edward School. The first week or so was rough, he would cry/whine about going and he didn't like going to after school care. Which in our family is a must because I can't be there for 2:50 to pick him up every day. But now he has really gotten into the swing of things and actually likes going to after school care. When people ask him what his teacher's name is, he always includes the ASC teacher, Mrs. Jennifer. He has really gotten the days of the week concept down pat and every morning asks what day it is and where we are going that day. He knows now that we go to school Monday through Friday and stay home on Saturdays and Sundays. He also receives speech therapist twice a week at St. Edward with a lady who has sent me some of the nicest notes about his progress.

Honestly, this woman has no idea how much these emails ease my worries. I always pray that Hunter does great things in the future, but to get reassurance that someone else believes that will happen, and especially from a professional, makes all the difference in the world!!

I also wanted to mention that on October 25th I will be participating as a member of the family panel at an Usher Syndrome Symposium in Baton Rouge at the Pennington Biomedical Research Center. We are focusing on getting families from Louisiana together to discuss all aspects of Usher Syndrome. Dr. Jennifer Lentz who spoke at our fundraiser last September in Broussard is putting this on along with the LSU Health Sciences Center out of New Orleans. If you know anyone from Louisiana and surrounding areas who would be interested, please email strotochaud@usher2020.org.

My post will be a little short, but I will add a few pictures. Pictures tell more of a story than my updates anyway.

Riding in the new neighborhood!

And this munchkin is now actually 10 months... just haven't taken that picture yet! #secondchildsyndrome

Family Vacation, Orange Beach, AL 2014

It's soccer time!

Friends from school at their Race for Education

Farmer's Dress day for Sugarcane Festival

McNeese Football Game

Harrison, just trying to keep up with Hunter. But really just in it to chew on the padding!

2014 Gumbo Cookoff in New Iberia

 

It's good to be home again :)

 

Stay tuned for upcoming Halloween costumes... we are going trick or treating at Cajun Palms this weekend!

 

elise

This just happened....

Today was Hunter Paul Faucheaux's 1st day of Pre-K 3! It's a full time class, 5 days a week that goes from Pre K 3 through 3rd grade. What an amazing and beautiful journey he has been on to have the ability to be mainstreamed and to attend the same little private school I did when I was in elementary in New Iberia. If you remember our summer trip to PA to see St. Katharine Drexel's shrine with Mrs. Karen, the principal of St. Edward, you know that St. Katharine Drexel founded St. Edward School. And Mrs. Karen has upheld her image and her spirit in everything that they do at St. Edward's.

I have to say I am one proud mama. It took a village to get Hunter where he needed to be, and I mean a village. From everyone in our family who cheered, and prayed, and babysat, and drove Hunter to Baton Rouge, to all of his therapists and everyday caregivers. And to our friends. I know Blair and I would still be standing today without our friends who gave us the courage to push on when we didn't think we could.
This picture right here is worth a thousand words!

I am reposting Mark Dunning's most recent blog post. Mark started the Coalition. But that statement doesn't give him enough credit because he started SO much more than just an organization. He started an extension of my family. He started a movement. He started something that is making an impact worldwide. Men/dads/husbands like Mark Dunning are one of a kind.

Uncertainty and Uncertainty

July 30, 2014

by Mark Dunning

 

Usher syndrome is about uncertainty.  It is not knowing.  It is fearing the future and desperately clinging to joyful moments in the present.

 

So is cancer.

 

My daughter, Bella, has Usher syndrome.  My wife, Julia, has cancer.  They are mother and daughter and, like all mothers and daughters, they are very similar and very different.  They are different people with different diseases living their lives in different ways.

 

Julia has a rare form of cancer.  It is slow moving, and no one really knows the expected progression of the disease.  We are told mortality rates, but those are guesses.  We are told she will be fine, that she will live a long life.  We are also told that there is not enough data to know for sure.  For now, all we can do is monitor it and hope for the best.

 

We lack data on Usher syndrome.  There is no clear information on the expected progression of the disease, only anecdotal evidence, really.  People with Usher type 1b slowly lose their vision but there we have no defined milestones, no clear understanding of when, or if, Bella’s vision will get worse.  All we can do is monitor it and hope for the best.  Monitor and worry. 

 

Like Usher syndrome, there is controversy around the treatment options for Julia’s form of cancer and not enough data to prove efficacy.  Vitamin A and DHA and lutein appear to slow the progression of Usher syndrome.  Sunglasses might help.  We don’t know for sure.  For Julia, it is surgery and a form of chemotherapy called Hyperthermic Intraperitoneal Chemotherapy (HIPEC) that itself is controversial.  There is not enough evidence to know for sure if it will cure the cancer.  If not, the only option right now is to have the same surgery and chemotherapy again.  And again.  And again.  Monitor and hope for the best.  Monitor and worry.

 

This post isn’t about Usher syndrome.  But, as always, it is.  Bella was always going to be fine in the future.  Treatments are coming.  We’ll save her vision.  Even if we don’t, Bella will be happy.  She has a great attitude about life.  She has a lot of support.  We’ll always be there for her. 

 

Unless we aren’t.  What then?

 

Bella has always lived for today.  She soaks in the happiness of the moment.  Julia is different.  Happiness is always a future return.  She fears it in the present.  Good things today mean bad things tomorrow.  That’s how she gets through tough times.  There will be sunshine tomorrow.  Suffering today is just investment in future happiness.

 

Usher has challenged that approach to life.  It is bad today.  It will be worse in the future.  How do you get through today when there is no forecast of sunshine for tomorrow?  And what if there is not tomorrow at all?

 

While Bella whistles a tune through the present, Julia is adapting.  She takes each day in slivers now, balancing wisps of happiness with tweaks of fear.  She dips a toe in the bath and pulls it back, catches glimpses of contentment through the looming fog of cancer, of Usher.  Somewhere out there is the life she wants for herself, for Bella, but it drifts in a cloud like a dream, far away from where she stands.  And that is what is best for Julia.  Today is not misery.  Today is not glorious.  Today is just something to be gotten through while tomorrow lurks.

 

That’s still hope, though, isn’t it?  To, each day, still believe in tomorrow?  There is still a future out there for Julia, for Bella.  That future will have good things in it.  It’s not a given.  It can’t be taken for granted.  But tomorrow has never been anything more than hope.  The future is never anything but opaque.  After all, there are few certainties.  In our family, only three come to mind.

 

Bella has Usher syndrome.  Julia has cancer.  And, right now, today, they have each other.

 

 

Usher Syndrome Coalition
© 2014 Usher Syndrome Coalition

 

Here is the original blog post, and from there you can find many more. And they are all amazing.

http://usher-syndrome.org/index.cfm/event/blog.detail/blogId/11668#blogTitle

 

Warmly,

elise

Recent Happenings!

I had a huge gap in postings so here is a short recap of what our summer has been looking like as far as every day life!

Blair got a new job back in May on the complete opposite side of Lafayette from where he was, which also means on the complete opposite side of town from Nini's house. So unfortunately, after 2.5 wonderful years of Hunter staying at Nini's house during the day, we had to make a move for both boys, for logistical reasons only. So Hunter and Harrison started at a new daycare in Broussard called Buttons and Bubbles. It was not an easy adjustment for Hunter, he asked for Nini a lot and even this morning mentioned going to her house, which he hadn't done in a while. But it's been good for him, it's been a growing experience for us all. Speaking of growing, Harrison is growing like a weed! Not to mention he started crawling and pulling up on everything this summer. But Buttons and Bubbles will also soon be in the past because both boys started at an in home sitter in New Iberia today. And as crazy as this seems, the in home sitter lives in the house that we lived in when I was born. Talk about going back in time many many (too many to count) years ago! Hunter will only be there a week because... drum roll please.... he is starting Pre K 3 at St. Edward's school in New Iberia!! When we went to buy school uniforms a few weeks ago, I about fell over when he had his uniform on. He looked like he was 10 years old! I've already started preparing myself for the first couple of weeks of dropping him off. It's going to be so so great for him, but I'm just not sure I am emotionally prepared yet! Please keep him in your thoughts and prayers because adjusting to change is not one of his strong points ;)

In the meantime, we had our house up for sale because we started building a house in New Iberia back in March. It's three doors down from my parents, next door to one set of grandparents and in the same neighborhood as my other grandmother plus 10 minutes from Blair's parents, so Hunter is in hog heaven! We got an offer on our old house mid June and closed this on July 15th. But since we were in Boston last weekend for the Usher Syndrome Coalition Family Conference, we moved out the weekend of July 4th and moved in with the grandmother until our house is complete. We are shooting to be in mid September.

The Sunday after we moved out, I asked a girl who has taken pictures of the boys before to come and take a few shots of us at the old house. It was such a bittersweet moment for me. It was the house I brought my two boys home to from the hospital. It holds so many great memories including many many firsts for both of my boys. I will never ever ever forget the night Hunter crawled and the day he walked through the door and straight into my arms for the first time. I will miss our dancing in the kitchen and the living room and cooking pizzas in the kitchen. All things that of course will be done in our new house, but there's nothing like your first family home. Here are a few of the pictures from Nicole Bell Photography:



I started this post a few weeks ago, so I can update you guys on living in "the berry" because we have been there for almost a month. And it's been so nice. I never realized how small my front yard was until we started playing in my grandmother's yard. And my parents have been a big help and Hunter gets to spend more time with them, and of course living with my grandmother has worked out really well for all of us. (at least we think so ;)

Follow us on Facebook!

Good Morning!

After attending the Usher Syndrome Coalition's family conference a few weeks ago, we were flying high with all of our fellow parents of kids with US, and we decided to start a facebook page for everyone to be updated on Hunter's journey. This page was also more so created for each.and.every.one.of.YOU all over the WORLD to share with your friends, family and co-workers to start talking about Usher Syndrome. To give Usher Syndrome a new light, and not make it out to be a life without life. Because Usher Syndrome in fact does not stop a person from living. It just changes their every day routines. Get to know someone with Usher Syndrome and you will realize it's nothing contagious, it doesn't harm his or her spirit. It's just something that has made these people a little stronger because they have to work a little harder than most!

https://www.facebook.com/angelicears

Like it. Share it. Talk about it. Advocate for it. We aren't asking for your money, we just want your support.

And before you know it, you will be the reason that there is a cure for it!

Many many thanks!

Annual Eye Appointment 2014

Today we had Hunter's annual (for now) eye appointment with Dr. Piccione in Lafayette. He is one of the only pediatric eye doctor's in the area and Hunter has been seeing him since we got the Usher 1C diagnosis.
I probably didn't really even mention to anyone, except in passing, that he had this appointment. I don't think I really put much stock into anything going on at this age because the "typical" vision loss progression isn't supposed to set in for another few years. **PLUS- we will have some form of treatment before then, right?! :)**
Anyway, the nurse did a few tests with a computer screen in the distance and a few black and white pictures and he had to identify what they were. They were actually black lines that weren't connected, I wish I could find an example online but I can't. It was like 3 semi-circles with three vertical lines and the dots on top of the lines for the candles. I think I'm confusing myself trying to explain it but anyway. He then had to do it with one eye covered and match the picture on the screen to the same picture on a card he was holding. He probably got 95% of them correct.

Then they had him look at a few pictures like this to test for color blindness. There were shapes in the pictures and he nailed them all :) Here is an example of that one.
 

They dilated his eyes afterwards so we went look for a pair of solid black sunglasses next door while waiting to see the doctor. Well all he wanted to do was try on the glasses and say, "Look, I'm NANA!" Although I don't think she found it too comical, I sure did!

 



Then shortly after, we were called to the back and Dr. Piccione came to look at Hunter's eyes. He's a man of very few words, so I made sure to talk a lot to get my questions and concerns answered.
After looking in his eyes for a minute or so, he said that he was slightly near sighted, but not enough to require glasses. But I asked if that had anything to do with Usher Syndrome and he said no, just merely genetic. (Blair and I both wear contacts because we are near sighted, so that's probably inevitable for both of my boys. Blair started wearing glasses in the 4th grade.)

I also asked how many Usher patients he sees, and he said probably 10. Now that's pediatric patients, which is probably a good number because MOST children in this area who are born deaf do not know they could have Usher Syndrome until a later age when they start having vision issues. We had the genetic testing done due to family history, and that is why we got our diagnosis at such a young age.
Also, I asked if they took pictures of the eye because my eye doctor did just a month or so ago and we could see 3D images of the eye and I figured it would be a good thing to have. He said yes and they ended up taking a picture and will take another one a year from now to start comparing and looking for any visible changes.
The doctor did mention that he has very thin blood vessels, which is an indication of some type of RP. He said he normally wouldn't mention it unless there was family history of RP, but since we have it he said the cells are thinner than normal. But I guess that's par for the course. We are just so so grateful that at this point, things are looking good.
As the late Kidd Kraddick used to say, keep lookin up cause that's where it all is! :)

 

thanks for following-

elise

#USH2014

This past weekend, Blair, Hunter and myself flew a non-stop flight from New Orleans to Boston for the 6th Annual Usher Syndrome Coalition's Family Conference on Saturday. We thought it would be Hunter's first flight back when we booked it, before knowing about our PA trip, so we thought a non-stop flight would be best. But keeping a toddler entertained and sitting in the same seat for 3 hours was exhausting. Our high hopes of having him nap failed until 10 minutes before we landed in New Orleans on our way home, at which point we kept him up so that he could sleep in the car rather than getting a little power nap before our 2 hour drive home from the airport!

We stayed at a very centrally located hotel in Boston, so every corner around us had shops, restaurants, and historical buildings. It was an absolutely beautiful and clean city. We got there around 730 Friday night and Hunter & Blair got to experience their first subway ride together from the airport to our hotel. (I of course was having a slight anxiety attic while always keeping my body between Hunter and the subway tracks!). But he loved it. He loved the train and he loved to people watch. We all crashed pretty hard after a long day and woke up early to attend the conference. There was a babysitting service for all of the children there so Hunter got to play all day while we attended the conference.

As a member of the coalition's board of directors and governmental relations committee, I was asked to give the welcome speech to start off the day. They wanted me to touch upon the work we have been doing in DC to try and obtain funding from the NIH and to announce the location of the family conference for 2015 since I organized booking it in NOLA for 2015. I even got a few cheers after announcing the location, so I hope a lot of people can make it! The first half of the day included talks by a few different professionals just touching upon genetic testing, the psychological effects of living with US and what some of their patients have experienced, while after lunch there was a family panel that included 4 people with US and one mom of a 4 year old girl with US. The family panel is always the best part of the day. It's real people speaking from the heart about their own experiences with Usher Syndrome. Their experiences were raw. And everyone loves hearing something "real".

One of the members of the panel was a 32 year old dad with Usher Syndrome. What an amazing journey he is on, living with a wife and two kids, while losing his eyesight rapidly. He didn't find out he had US until after he was married with a child at the age of 27. When asked what the most difficult part of living a life with Usher Syndrome was, he began to tell a story of when he and his family were in Las Vegas. Walking the crowded strip was not an easy task for him, so his 6 year old son came up with a system of different hand squeezes for when he needed to go right, left, stop, slow down. You can't help but tear up when a this tall, athletic and quite normal looking guy who is going through everything Blair and I are at this point in our lives, has to deal with vision loss on top of raising two kids and taking care of his family. His 6 year old was ultimately taking care of him. His 6 year old is dealing with his dad's vision loss, and quite well from what I understand.
Another member of the family panel that struck me pretty hard was a mom of a 4 year old girl. She is from Great Britain and came introduce herself to me during one of the breaks since she knew from my speech that I had a 3 year old with US. I have to say, she is one of the sweetest people I have ever met. Besides the fact that I was obsessed with her accent.

And Chloe Joyner, she is a beautiful person inside and out. Her 4 year old daughter is the luckiest little girl on earth to have Chloe as her mother. Her words brought me to tears, there was no fighting them back. Thank you, Chloe, for being a member of the family panel and for sharing experiences with us. Your positive attitude and outlook on life as a parent of a child with US is so very admirable.

I can't even begin to explain how meeting so many new people at the conference this year touched my life. When Blair and I attended our first conference in St. Louis 2 years ago, I walked in, saw what seemed like a million white canes and seeing eye dogs, and I walked right back out because I couldn't keep my composure. But the community that is coming together, the parents who are starting foundations, planning fundraisers, and merely walking up to me saying thank you for your speech, I have a child with US too. Those are the people that I secretly consider my best friend when I start to think about Hunter's future and how no one in my immediate support system will ever come close to imagining the worry that Blair and I have for Hunter. But my secret best friends, they have that pit in their stomach just like me, and that knot in their throat when things get all too real at doctor's appointments that "normal" children never have to go through. But they also have a drive to redefine Usher Syndrome, and that's my favorite thing that we all have in common. I can't wait to see them all again next year.

 

And here are a few pictures from Boston, as well as a video of Hunter in the hotel room. He is catching on to more and more these days, I just love to sit there and listen to him talk. It's still so surreal to me ;)

 

(gotta get one selfie in there)