#12/31 Awareness and Advocacy--that's what it's all about

See these good people?  They are friends of mine.  Stephanie won her age group at the BuddyWalk 5K on Saturday!   Ed, her husband, placed second in his category!

There are several things that make them remarkable.   Ed has been working very hard to lose weight this year.   By eating healthy and exercising he has lost over 100 pounds in 10 months!  At his first race back in the spring, he had to walk for a good part of the race.  Now he's coming in second place!   He's been chronicling his weight loss at his blog.

They also are smart, funny people who like to laugh.

They're from Texas, and they are surviving--and thriving in--the culture shock of central Virginia.

They home school their son.

I don't know if they've ever had any personal experience with Down syndrome before they met Hannah, not that it matters.  

Saturday was Stephanie's birthday, and she chose to spend it running to support the Down syndrome community.  How cool is that?

What is even more cool is the comment she left me yesterday:
Great pics from the Buddy Walk. Sorry to hear that Lois has a viral infection. Ed and I sent our swabs back to the Be The Match registry last week, so we should be official as soon as they're processed. I didn't know anything about the bone marrow registry before I read Lois's mom's blog, so I know there are lots of people who will register once they know it's there. Sending lots of prayers up for Lois and her family.

The power of Blogging thrills me! 


(In related news, Lois is home from the hospital and does not have a virus.  She had a reaction to a medication which mimicked an infection.   She's still struggling to recover from the effects of both chemo and the reaction, but no fever right now.  Lois, please sleep so your parents can rest as well!) 

10/31 Buddy Walk Pix

I haven't been out and about visiting other blogs this weekend, but I bet there are a gazillion Buddy Walk pictures hitting the web.

Since we're about to go out to dinner to celebrate James' new promotion/raise/client, (and the fact that we don't have to move for FIVE more years!), I'm taking the shortcut for today's post and throwing up some BW pix from yesterday.

Our good friends The H-B's came along for the fun!   Chris and I sneaked away from the registration table and caught up with everyone else just in time to begin the walk.   It was hot--86 degrees!

        There was a jump rope team performing--Hannah loves jumping rope!

Just before we left the walk, we ran into Jay and Mac, Lois' Daddy and brother.  Last week Lois finished her first round of chemo, which knocked her down with a viral infection, so she's back in the hospital.    All 1,000+ people attending the Buddy Walk received a flyer about Lois and her need for a bone marrow transplant--it's easy to join the Bone Marrow registry, just a cheek swab and you're good to go!   Please go to Be The Match to sign up!

9/31 Buddy Walk!

Today is the Richmond Buddy Walk!    It's being held at one of the biggest shopping centers in the area--Short Pump Mall. It's an open mall, so we'll be outside and the weather is expected to be beautiful--sunny in the low 80s.   (That's my reminder to get the sunscreen out!)

We've got a collection of ratty old t-shirts from the past dozen years of Buddy Walks. Some have been handed down to Hannah to use as "paint shirts" to keep her regular clothes clean when she's being "creative".   It will be nice to have a new presentable t-shirt to wear!

Hannah and I went to retrieve Chris yesterday.  William and Mary has a fall break which conveniently falls on our traditional Buddy Walk date.   Chris and I usually volunteer at the registration table, while James and Hannah arrive a bit later.  

Hannah has done well with her fundraising.  She knows that the money she raises goes to our group, and to the NDSS.  Our Richmond group does a terrific job of sharing the funds directly with families and individuals with Down syndrome.  We have an Enrichment program which is available to all families who are active in the DSAGR (Greater Richmond).  The Enrichment program allows families to receive scholarship funds for an activity in which the individual with Ds would not otherwise be able to participate.   Last year we all went to Easter Seals Family camp for a week.   This year Hannah decided she wanted to focus on her swimming, so she applied for a series of swim lessons with a really great coach.  She's improved her strokes considerably!

Hannah has also been enjoying making new friends in FunQuest.  It's a group of kids with Ds in the middle and high school age ranges.  They do TONS of stuff--from movies and ice cream to cooking classes to glazing pottery.  All the activities are subsidized by the DSAGR.   It's a great opportunity to socialize and gain independence in the community.  

I'm glad that the Richmond group still does an Official Buddy Walk--I think it's very important to be a part of a something bigger than just our little corner of chromosomes.  The National Down Syndrome Society may not always promote things the way I'd like them to, but I am glad that they are advocating and lobbying for the Down syndrome population as a whole.  So many times we don't see the big picture, and the NDSS helps keeps the national conversation about research, education and advocacy relevant to the entire United States.

Off my soapbox and on to the Walk!  Pictures coming up soon, I hope!

Overdue Buddy Walk

Let's see...I guess I'm only 6 days late, but it feels like a couple of weeks! Last Saturday was our Richmond Buddy Walk. We had it at the Richmond International Raceway. We had all our activities in the infield. (Is that what it's called? You'd think after living in Charlotte, NC for 15 years I'd know a little something about NASCAR, but I don't.) Then, we walked on the actual racetrack! It was pretty cool on the banked curves--we had Hannah in the stroller and had her zipping all around like she was Lightning McQueen (but we call her Lightning McNan).

Chris and I worked in the registration tent, which was fun. We did get to sneak out to watch Hannah's dance team perform. They did great, even though it was sprinkling a little bit. Fortunately it never did pour, though it threatened.

James, Kate and Hannah had fun watching other performers and checking out the firetrucks. I wasn't thinking at all, or I would have gotten tickets to take a ride in the pace car around the track. Hannah would have loved it. Maybe next year!

Photo and video editing at www.OneTrueMedia.com

All together now...

Chris is home on fall break! Hannah has been bugging him solidly for the past 3 hours--she's so excited he's here! We are too! He has Monday and Tuesday off from classes. Hopefully Nan will slow down a bit and give him some time to rest.

The three kids were having crazy fun this evening--teaching Hannah what to say when anyone asks a question: If this is a consular ship, then where is the Ambassador?

Q: "Hannah, would you like more fruit salad?"

A: "If this is a consular ship...."

It's a multi-purpose answer. But only funny if you're a Star Wars fan.

More craziness: Yesterday was Dog Day. Clipping and bathing. It takes a few hours to groom them. Bunsen detests his bath. But when he is set free he is very excited. All I have to do is say, "crazy" and see what he does?

Make an on-line slideshow at www.OneTrueMedia.com

Tomorrow is our Buddy Walk! I am woefully behind. I made Hannah's fundraising page, but I never sent it out to anyone, so she has officially raised $0.00. I feel guilty enough that I'll probably hit up friends and relations soon after the Walk is over. Chris and I are volunteering, Hannah is performing with Miracles in Motion, and Kate and James are supervising Hannah. I am hoping that this year I'll actually be able to walk! It's been years since I've walked--I'm always on a committee or being a gopher. We're doing registration this year, so maybe we'll get to sneak out for the walk.

Sunday we're having Thanksgiving. This is the last time we'll all be together for a couple of years, since Kate is leaving on October 22nd. She hasn't been home for Thanksgiving in 4 or 5 years. She is our chief stuffing maker and she's looking forward to getting her hands on the dry bread and sage! She's really good at making stuffing. No oysters allowed, thank goodness!

After feasting, we'll put the kids to work on the mountain of mulch that was just delivered--sounds like a good way to build up an appetite for pumpkin pie, don't you think?

Buddy Walk...again

Today was the DSAGR Buddy Walk. It was a beautiful day, in a beautiful location (University of Richmond). I didn't get to see much of the Buddy Walk since I was on the food committee (committee of two!). I worked through the whole thing, before, during and after. I didn't even bring a camera since I knew I wouldn't be able to keep track of it.

But by all accounts, the Buddy Walk was lots of fun. Hannah was recognized as a Buddy Captain (Team Leader), and got to go on stage (she LOVES being on stage). She had a good time with the face painting, and the free ice cream and cotton candy. I think that her favorite part was dancing with the Zumba dancers. She was the first kid who went up to dance--and she can shake her bon-bon pretty well! I had reports from lots of people who enjoyed the show!

Here are two pictures from James' camera phone. They are tiny, so you click to enlarge.







Kate made it home safely, but not until 5:00p.m., since she missed her early morning flight and had to be re-routed. The sisters are busy re-connecting in Katie's room, reading stories to each other.

I'm going to go put my feet up and read the paper, with a puppy to supervise my relaxation. Have a wonderful weekend!
p.s. Grace: They don't have Tapirs at the zoo, but they have South American Cavies, which are also cool!