Tuesday, December 09, 2008

Ethan Inspires

Ethan sitting in circle time in his classroom. 

I opened my email today to find a message from a mother in Nebraska (Hi Stacy!) whose son is also profoundly deaf (with cochlear implants), severely apraxic, and wears glasses. She had recently found Ethan's World and wrote to tell me that it gave her comfort and inspiration. 

It made my day to hear from Stacy! What an honor it is to be able to inspire people with Ethan's story. I'm just blown away by that. 

I started this blog in order to keep our friends and family updated on all things Ethan, and here we are nearly 3 years later, meeting (and even inspiring!) families who face similar challenges. I've been able to share the highs and lows with people like Kristina in Delaware, parents who know first-hand the roller-coaster ride that accompanies the unraveling of one diagnosis after another. 

The Internet ROCKS! 
Today I attended a field trip with Ethan's class to a beautiful old theater downtown for a children's production of Rudolph the Red-Nosed Reindeer. It was fantastic! We were in the 2nd row, so Ethan and his classmates had an excellent view of the stage and were able to see the kids facial expressions and the details of the set and the costumes. Ethan sat still for nearly an hour, something I never thought I'd see without heavy medication. He was fixated on the interpreters for the first few minutes, but then realized that he was missing a dozen dancing elves and quickly turned his gaze to the front of the stage. 

Mom reminded me that when you have a special needs child you can often get special (re: awesome) seating at events like this. If you think I'm going to exploit my child's disabilities just so I can have a better seat at plays and performances, then you are exactly right :-) 

(Actually, I can't imagine he would have as much interest sitting anywhere else....)


Kel said...

The Internet truly is pretty awesome. I know that when I first found your website, it was a huge find for me - the first time I had found a story of a child with CMV that was truly thriving! He is amazing, as are you, and you touch more lives than you know with his story.

Hetha said...

Aww, thanks Kel! There are definitely many more unhappy CMV stories than happy ones. I couldn't find a single happy story when I first began searching online and remember feeling my heart sink the more that I read. Ethan is absolutely one of the lucky ones.

Laurie said...


Yes, the Internet has made a huge difference! You are an encouragement and blessing to others!

Don't feel guilty about getting front row seats. . .it is no fun when the person you love cannot enjoy a presentation if you had to sit anywhere else.


Dave said...

Not only does the internet rock, it is people like you that find the time and effort to put others in a place of comfort. You and my little buddy inspire us all!


KC said...

Dude. Of course Ethan inspires as does his mama. Which is exactly why I nominated you for that BlogHer heroes award. Don't make me start my UGLY chant again.

jen said...

one of the things i love the most about the blogosphere is the connectivity it allows.

flutter said...

one of my favorite things about the internet is that it brought me to you.

Kyla said...

That is so awesome! I always get a little jolt of joy when I connect with someone new or get the chance to help someone in similar circumstances. Without the internet, the chances of finding similar families with similar struggles would be nearly impossible, I think.

I'm so proud of Ethan. He is just amazing, but you already know that.

therextras said...

WooHoo for good seats!

She said...

Yes. The internet DEFINITELY ROCKS!


Aliki2006 said...

The internet DOES rock--I do love the connections it creates.

And don't think twice about those front row seats!

leahlefler said...

The internet totally rocks!

I love that picture of him in circle time- I look forward to preschool in some ways because it is so neat to see them interact with peers and teachers.

How has the whole placement struggle been going? Has the school district found that St.Rita's is Ethan's LRE? I still have my fingers crossed for you. I agree, IFSP meetings are so much easier than IEP meetings!

Cheryl said...

I'm with you, blogging changed me in such positive ways. The people that I have met are such kind and caring people.
Your blog has always been an inspiration to me. Ethan is such a joy, it has been a pleasure to "watch" him grow....in so many areas!

Julie said...

Yay Ethan and yay front row seats! Our theater does the same - what a bonus for Tate to be able to 'read' the performers' faces.

I love the way the internet brings so many of us together... now I just need a timer next to my computer, to bring me back to real life :0)

I'm also curious about the school process... how's that going?

(Maybe after Christmas)

Kristina White said...

Oh, I'm so far behind on everything - and couldn't be happier because Emma now has her CI turned ON!!! - I've not had a moment to catch up on my online pursuits and am thrilled to see that I'm semi-famous (Kristina in DE).

I just have to say that it is so wonderful that the internet brought us together. You are so amazing to be able to write so eloquently about Ethan. I'm just not brave enough to share Emma's story....yet. The truth is, Ethan inspires me but you inspire me, too, and it makes each day a little easier knowing that we are not going through this crazy roller coaster ride alone!