I wish I could take the credit for this great idea, but I have to give it to Ivy Scherbarth from her website http://livingduchenne.blogspot.com.  She has a "Friday Photo" to celebrate her son, Rain, and her family's life Living Rain's Duchenne's.  However, I do have some catching up to do.

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10/31/14 -Can't leave out Halloween!  He was Olaf. We met neighborhood friends and trick-or-treated.  His classmate, and good buddy, Morgan, was Elsa.  We ran into her while out and about.

We also can't forget Ethan's first real cousin, Jack, or Jacktober.  Here is with his daddy, Uncle Jeremy.  Aunt Kristi is taking the pic :)

11/15/14 -Above are a couple of pics from our Mulcahey's event.  So many people worked so hard to raise so much money for PPMD.  It was a great event and I'm proud to have been a part of it.  We raised nearly $5500 in a night.  Not bad for our first time out. Alex Slavin won the TV.  He and some friends were some of the first ones to come out and support Ethan.

11/8/14 -Spending a night celebrating one of Jolie's besties, Ava's, birthday.  Always fun.

10/25/14 -Ethan has his own device. Now he is learning the selfie.  If time would just slow down a little, I may be able to keep up with this little bugger. I could watch these littel clips all day long.

11/1/14 -Ethan and his karate buddies bid farewell to two beloved sempai's who moved on to greener pastures.  We wish you luck.  You were great teachers.

10/18/14 -Betsy and I met in college, SUNY Albany.  Our roommates and close friends ran a garage sale this weekend to help Ethan and grow his trust.  It was difficult, again, to see people who love Ethan so much moved by their need to help him, and to try to make things "right".  We love you guys and we are grateful for coming together to support your little "nephew".  He is lucky to have family such as you guys, and thank you for doing this.  Ethan also got his blue belt today.

10/11/14 -Spent some time at Schmitt's farms buying Halloween crap.  It's one of my favorite holidays, but there's too much crap to buy, so we have such lame decorations, and we love it.  Ethan and Jolie make half of the stuff we usually hang up around the house.  It brings me back to things like "It's The Great Pumpkin, Charlie Brown!"

10/3/14 -After karate class, we grabbed a quick picture of the door prize for the big event on November 15th for The Parent Project for Muscular Dystrophy PPMD.  It's at Mulcahy's of Wantagh from 1-5pm.  we're psyched!  We will save our sons, and have a great time doing it.

9/27/14 -The karate kids.

 

Another awesome way to celebrate life: connecting with people, enjoying the company of new friends, and having watching some amazing kids embrace their buddies.  Thanks TKA families.

9/13/14 - A very belated gathering for Matty's BDay. Matty is Ethan's "brother" in so many ways.  It makes it very easy for me to tease Matty's real dad.  On another note, Ethan has decided clothes are not for him.

9/20/14 - Ethan and Jolie have started this new game: "potions".  They raid the kitchen and try to make the most vile concoctions possible while still remaining edible. Nothing like finding a cup of garlic, saffron, chocolate syrup, salt, mayonaise, pepper, cinnamon and vinegar sitting on the table with two kids begging you to drink it. 

9/6/14 - This was one of the best Saturday's we have ever had since Ethan's diagnosis.  The day began with a karate tournement fundraiser that Larry Batista and his incredible team at TKA of Bethpage. We played, had fun and ate all more morning into the afternoon.  Jolie, again, the awesome big sister, always kept close to her baby bro.  We left the tournament and went straight to another amazing event.  Former students, Kyle Vidasolo and JR Alonzo are doing Ride for Ethan in about a month.  They did this all on their own to help us with fundraising and awareness.  This past Saturday, they had a kick off happy hour that was assembled by MORE great alumni, Carly Sheehan and Emily Coughlin and others.  It was overwhelming.  Such amazing and generous people.  On a side note,  Carly's younger sister, Maggie, handed me an envelope with a beautiful card and $250.00.  She donted a portion of her Sweet 16 gifts.  IN...CRED....IBLE.  I love being a teacher, because I get to see what is often missing in the news: the amazing things that our young people do every day.  Thank you TKA.  Thank you team Ride for Ethan.  Thank you Maggie.

8/30/14 - The last weekend before Ethan's first day of kindergarten.  He swam. Jolie did her ipod/pad whatever like an old pro.  Jolie was an awesome big sister on that first day, though.  She has been looking out for him ever since.  

8/23/14 - We had a busy weekend!  First we made our ALS Ice Bucket Challenge Video.  Later that day, we went to a Luau at Ethan's karate school, TKA of Bethpage.  Betsy made a tray of ham and pineapple skewers and we ate those along with a ton of other good food people brought.  It was a nother great day.

8/16/14 - Sarah and Mary Caulson and Amanda Abbott helped to put together one amazing volleyball fundraiser event at Long Beach for us.  It was an awesome day and we spent it with a lot of amazing people.  I had to put three pics on for this one.

7/26/14 - Ethan and Lyla sharing a nice evening at the beach at Pt. Lookout.  Their shadows are holding hands.  

8/2/14 - We spent most of last week in upstate NY near the Finger Lakes.  We did a lot of exploring and one of the things we found based on the suggestion from Irene Unger was Taughannock Falls.  It was a nice hike to the falls, and a beautiful site to see.  The falls you see are taller than Niagara Falls (Fine, call me Cliff Claven.)

 

http://www.taughannock.com/

8/9/14 - Ethan, Jolie and sone of our neighborhood buddies.  Thanks for treating us to a great afternoon of fun, feasting and frolicking!

 We had a blast!

7/12/14 - Mima (left) took us all out for our anniversary at a nice little German Restaruant in Long Beach, Currywurst.  It was great.  Kids loved the food.  I loved the beer. We all loved the night out.  Thanks Mima!

7/19/14 - (right) The lovely and wonderful Alanna Bowman invited us to her graduation party.  She will be off to NYU late this summer.  We are very proud of her and we were glad to celebrate this grand occasion.  So, we collected fireflies and made a night of it!

7/5/14 - Ethan and Jolie at the beach having a good time playing "jump the wave" - the water comes up, you jump the wave.  The water comes up and you jump the wave again. Seriously, we could've played this all day. We practically did.

 

Jump the Wave!!!

6/28/14 - Ethan and Daddy were invited to the FPM prom.  We had a great time and Josh Stewart from Newsday wrote a little piece about us:

 

 http://www.newsday.com/long-island/towns/long-island-now-1.1732330/floral-park-high-rallies-around-littlest-prom-goer-ethan-demmers-in-muscular-dystrophy-fight-1.8604831

6/21/14 - Ethan and his amazing big sister, Jolie, having summer fun in the backyard.  True love.

6/14/14 - The Saturday before Father's Day, TKA of Bethpage had a great fahter - child workout.  It was awesome. Ethan spent so much time at special events this week that he had been away from karate, and so this was a perfect way to come back.  Thanks Sempai Victor!

6/7/14 - Relay For Life @ FPM: This week's SS is a video because it is one of the most important things to which I've been lucky enough to belong.  This is yet another example of how wonderful and supportive the FPM community is.  If this gives you a glimpse at how much they have supported us in the way they have supported all those familes at Relay For Life, you will start to understand how grateful we are.

5/31/14 - Ethan earned his orange belt.  He is living the family mantra: "Never give up!" with the help of the amazing team team at TKA Bethpage. Watching Ethan struggle with the simplest of physical activities is hard, but he has these wonderful people making him love the challenge.  It was a day of proud mommies and daddies.

 

Especially us.

5/23/14 - Hangin' with my girl, Lyla

5/17/14 - Silhouette: Ethan and Daddy out for a walk on a sunny day

5/11/14 Saturday Snapshot: We have a green light for Operation "Mothers' Day"! Go! Go! Go!

5/4/14 Saturday Snapshot:

May the 4th be with you! Poppa and Grandma Marlene took us to Point Pleasant, NJ for some fun on the Jenkinsons' Boardwalk.

Please feel free to contact me at 2meetethan@gmail.com

Meet Ethan