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 ;)