The Scenic Route

I can't agree with this statement more.  Since Ben was born, we have met amazing people, learned so much, and gone places we never would have gone if we had not had Ben.  The Down syndrome journey is not one I had planned, and we got at a much slower pace, but I sure do love my tour guide!

I Wouldn't Change a Thing

If there was a magic wand that could take away Ben's Down syndrome, (which there isn't) I don't think I would use it.  Would I like to make life easier for Ben?  You bet.  Would I like to take away all the people who will hurt him over his lifetime?  In a second.  But I don't want to take away that special something that makes Ben who he is. He is a silly, active, inquisitive, dancing, giggling, ornery little boy, who has made our family so much better by being exactly who he is.  I love him just the way he is. 

2014 Ben's Brigade

.  Our photographer Erica Thompson of Images for a Lifetime built an amazingly cool set just for our kiddos, and Ben got to be one of the first ones to try it out.  While the idea was to sit or lay in the circle, Ben did not want to have anything to do with that.  He wanted to do just one thing.....

JUMP!

What you can't see in this photo is his big brother Noah who was laying on the floor about to get jumped on.  Erica got about 10 photos just like this and Ben had a blast!  

She did get a couple more good photos, but all of them have one thing in common.  If he was not jumping, he was getting into position to jump again.  

 This one is my favorite.  I call it his surfer dude pose.  I also reminds me of the opening of one of the James Bond movies.  

Thank you for supporting Ben's Brigade!

Ben's Birthday, World Down Syndrome Day and Ben's Brigade Fundraiser.

Today is Ben's 6th Birthday.  It has been a wonderful journey and we have been blessed to have Ben in our lives.  I will admit that it has not always been easy, (like today at the Doctors office with his annual blood draw), but it has always been more than worth it.  So enjoy this video that covers Ben's first 6 years, includes some facts about Down syndrome and an invitation to join us tomorrow,   March 21 and celebrate World Down Syndrome Day by wearing lots of socks, where ever you are.

And if you happen to be in South East Nebraska, join us on Saturday March 22,  for the 

2nd Annual Ben's Brigade Birthday Party and Fundraiser

Ben's Brigade2013

This past weekend was our awareness walk.  This was my second year of co-chairing the event, and I admit the job is not getting easier.  I know that seems odd because things tend to get easier the more you do it, and while I agree that is true most of the time, for me it was not.  Second the reason the job got so much harder, is because during the last three years that I have been involved, we have doubled the size of the walk in terms of both money raised and total walkers.  It has been great raising more money and having more walkers.  However, ordering and sorting 1600 t-shirts is a whole different ball game from sorting 750 shirts.  It all requires more volunteers, and those are harder to come by.  But in the end getting bigger is a good problem to have.

We are very proud of our team who continually comes out and supports Ben's Brigade (even on cold mornings like it was on Saturday)  Through fundraising we were able to earn three fact posters that were displayed along the walk. 

 

Ben enjoyed seeing himself in the photos.  

We are always happy to welcome new team members.  This year we were able to welcome a few of Ben's Kindergarten classmates.  I am just sorry that my duties as walk chair prevented me from doing more socializing with my team.  We were also sorry that John had to attend the Harvest of Harmony parade with the school band and had to miss out.  For the first time we were unable to take a family photo at the walk.   Thank you for everyone who supported Ben's Brigade!

Burden

 

I would not change Ben for the world.  But I would change the world for him.   

I made this poster quite a while ago, could not decide if I should post it or not.  

Honestly we have been lucky and have been blessed to have a wonderful caring and supportive community in our small town in Nebraska.  We have had very few incidents of inappropriate behavior or language used and most have occurred when we have traveled to one of the bigger cities around us.  I have not doubt that Ben will blaze his own trail and will show us all that individuals with 

Down syndrome can accomplish many things.

Happy Down Syndrome Awareness Month!

Step UP for Down Syndrome Walk

Thank you to everyone who has registered or donated to Ben's Brigade for the 2012 Capital City Step Up for Down Syndrome Walk.  Through your generosity, Ben earned 3 fact posters (pictured below) that will be displayed along the walk route at the Step Up Walk on October 6, 2012 in Lincoln NE.  A huge thank you to Erica and Images for a Lifetime for taking such adorable photos and for making the posters for the DSAF.  There will be 98 posters displayed along the walk route featuring 39 different Nebraska children with Down syndrome.   They truly are inspirational.  There is still time to register or donate.  Anyone who registers by Saturday the 15th. will get a free t-shirt with their paid registration. 
Click here to go to Ben's Team page:  

                                              We appreciate everyone's support!

Our Little Vampire

We have had a bit of an issue lately with Ben biting his brothers.  Quite a few times last weekend Ben would get very frustrated when his brothers would pick on him or tell him no, and the bite would happen.  It is pretty easy to see it coming.  First he gets mad, does a little growl, starts snapping his teeth and then goes in for the bite.  But boys can be pretty unobservant and not get out of the way. 
This new trend seemed to come out of no where, so I asked school if they have a biter, and they said no. Maybe he saw it on TV, or just tried it once and liked the result? We might not ever know.

Today Noah was playing on his Nintendo DS and would not share with Ben so Ben bit him in the side so hard he actually drew blood. Later when Noah was showing Dad his war wound I heard him ask, " Dad, how old does Ben have to be before I can slug him?" No Noah. No slugging your little brother. He really is more alike than different.
At least we know what not to dress him up as for Halloween this year.

Here are Ben's fact posters that were displayed along the walk route at the Step Up for Down Syndrome walk this year.