Own the Equinox Day 9: Bad Moms

August 31, 2016

by Elise Faucheaux

Elise Faucheaux is 32 years old and currently lives in New Iberia, Louisiana with her husband Blair and their two sons, 5 1/2 year old Hunter and 2 1/2 year old Harrison. Elise serves on the Board of Directors for the Usher Syndrome Coalition and writes about her experiences raising her son Hunter with Usher on her blog, Angelic Ears and Eyes. Most recently, Elise started a foundation to help fund a cure for Usher syndrome called USH ONE SEE.

Sure, we’ve all been there… I was the bad mom who forgot to send the Halloween candy to school for the class party. And when I sent it in a day late, it had nuts in half the candy--- in my son’s nutfree school.

My kid was the only one without a red shirt for the fire truck day this past spring. And my tuition check always inches in on the last day.

I give my kid my iPhone so I can grocery shop in peace, I have been known to feed them leftovers of the same meal four nights in a row, and well, yes, they do get processed food more than I would like to admit. And the whole green smoothie kick, they loved it for about a week and now it’s more like me threatening their lives if they don’t drink them. And to top it off. I yell more than I want to.

There you go – throw your tomatoes at me because those are the things that we get labeled a “bad mom” for aren’t they?

But I don’t think all of those things really make me a bad mom. I’ll tell you what will.

I got invited to dinner and a movie, Bad Moms (ironically), by a group of women this past weekend.

But on our calendar we had an Usher syndrome symposium in Lafayette all day Saturday (which the sitter alone cost me sixty bucks) and we had a thank you dinner the night before for the people who helped plan it. At Dark Roux. A place I wouldn’t normally go to on my own because I’m too cheap.

And the part that made me mad, was the FREE dinner the night before (Remember, I’m cheap). It turned out to be an amazing dinner at an amazing restaurant, where my kid could actually tolerate the spicy gumbo, I found my new favorite kind of wine, and I got to eat cornbread bread pudding (YUM!) without having to share with my usual crew of two, I might add. And to top it all off, I only had to take one kid, so there were NO dinnertime brawls this weekend, as opposed to last weekend’s adventurous night out, but we won’t go there.

But still I had been in tears the night before. Even fell asleep in tears because I just want a normal life. I wanted to go to dinner and a movie, and I might as well have thrown myself on the floor and starting kicking and screaming like a kid in the middle of target, because that’s really what I felt like doing. What I wanted to do. Instead, I sent this text to a friend.

“Can I just take a sec and admit that I hate how Usher syndrome affects my life?

Can I openly say it puts a kink in my life?

Whoa … that felt good to admit although I say it with such shame that I hate what my son has. And the effect it has on MY life. And I’m not even the one who has it. And I’m not saying any of this because of what it will do to my son. I’m only saying it now because it’s an inconvenience to my life. It sets me apart from so many people in so many ways. And I hate it. And don’t want to spend the weekend talking to other people about it.”

Picture of Elise's son Hunter Faucheaux
Hunter Faucheaux, 5 1/2 years old

So…yea… nothing like putting it down on paper, going back and reading it and making yourself feel like a bad mom! I openly admitted (and still would) how much I hate Usher syndrome. And of COURSE I hate it for my son, for what he has and will have to go through, for what his future holds and doesn’t hold due to this disease. I HATE how much this defines our lives and that sometimes we have to do things we just down right don’t feel like doing! Of course, after dinner, I was so glad we went. It was really nice to meet the people that we did that night, one being Nancy O’Donnell who works for the Usher Syndrome Coalition It was great to get pictures of Hunter and Jennifer Lentz, the researched out of LSU New Orleans who organized the symposium and spends every day working towards a cure for vision loss. Isn’t that AMAZING? I am an accountant. I’m not fixing anything but an out of balance financial statement.

Now don’t think I’m kidding here, but how beautiful and enriched and meaningful have our lives become since getting this wretched diagnosis? How many people have we met and how many stories have we shared, and how many times have we cried together, and laughed together and been able to bond with those in our Usher Family whom we never would have met before? Don’t get me wrong, if I could take Usher syndrome away I would but through the Usher Syndrome Coalition, I’ve been able to share all of these things with other people who GET IT. I mean REALLY get it. Some more than me. Some whose children are already legally blind. Some who walk with seeing eye dogs. And I think MY life is affected by Usher syndrome. Sheesh. Someone needs to slap a little reality into me. So I missed a movie and dinner. At least I can see the movie and drive myself to dinner.

The Usher Syndrome Coalition, and in particular the founder, Mark Dunning, has been such an inspiration to me. Since, receiving Hunter’s diagnosis I’ve always dreamt of starting a foundation of my own one day. My career wasn’t changing lives and I knew this was my calling. Last year we teamed up with “Team Cece” and walked the last mile of the Own the Equinox campaign together in Lafayette, LA. No registering, just buying a shirt and showing up to walk. When we had 100+ people show up, Cece’s mom Erin and I knew this could be so much bigger. We knew people wanted to be involved and we knew we had the support system to make my dream a reality one day. I just knew it and that day came this past summer. It’s official. 501(c)3 status, we are Ush One See, Inc. A play on words for the Type of Usher Syndrome (Type 1C) that my beautiful 5 year old son was born with.

We are here for all of those going through a life with Usher syndrome. We are here in particular for those in our area who have USH 1C like us. We are also here to support the Coalition for all they have done for us in the past and for all they continue to do for us now. Without the connections we have made through the Usher Syndrome Coalition, none of this would be possible.

So we are creating a “Team Ush One See” for the own the Equinox campaign. We are then holding our first OFFICIAL “Fight for Sight 5K/10K” at River Ranch Town Square on September 17th, World Usher Syndrome Awareness Day! All of our event expenses have been covered by our wonderfully generous donors, so all proceeds are going directly towards a cure for Usher syndrome!

And last but not least… I probably should be running a mile a day just to relieve a little bit of the stress that comes with planning a major event like this, but not only am I cheap but I’m short on personal time and lazy too (I never said I was perfect)… so this year I am going to write a letter a day for 26 days to select individuals who have helped me accomplish my goal in creating this nonprofit and organizing this event. Because without my village, I am nothing.

So I would like to give it up to the Usher Syndrome Coalition, because without them my Usher Family would consist only of the people who live inside the walls of my house but with them, it consists of thousands from across the world.

In honor of my son, Hunter Paul Faucheaux, Usher Syndrome Type 1C.

Learn more about Usher Syndrome Awareness Day and how you can Own the Equinox.

Do you have a question or comment? We'd love to hear from you. Your comments will not be made public without your permission.
Would you like this comment to be made public in future testimonials?

Powered by Firespring