Friday, March 29, 2013

Push button here. Car starts there.


We have been surprised and so blessed by a neat provision of God through some very dear friends to grant us a newer,  nicer, better-fit-for-a-family-of-four car than our little sporty Eclipse that M drives to work each day.  So we’ve got an extra car that we don’t *have* to sell right away but are putting out there to see if anyone might need it. 

Paying forward a great deal if you’re in need of some wheels with great gas mileage.

What we’ll miss most…. remote start!! SO nice in both warm and cold weather. It sure spoils a driver quickly!

Edited to add…. Good Gravy!!  It’s been on Craigslist for all of 60 minutes and I’ve got 3 who plan to see it tomorrow. Who knew?!?

Saturday, March 23, 2013

Pageant prep

Its time for Miss Amazing again.  I'm ready to go and it's time to wait for practice to start. I didn't like some parts of my special dress so I changed right before we left. It's a good thing I have a few pretty dresses.

Lots of people remember me,  and they like to say hi. Miss Ellie who puts this whole pageant on for us is from Nebraska,  so she likes my name.

We found out that my friend Paul from last year is here again,  and he said he wants to walk with me again. It will be nice to see him. He is really cute!

We will show more pictures later. For now,  I'm coloring while I wait...

Friday, March 15, 2013

Another blurb. Nomination for the DSAGSL

This time it’s for local charity awards, why I think the DSA is a worthwhile cause.

The Down syndrome community is most valuable when it provides just that. Community. Knowing others who are traveling a similar journey, learning from experts who really care about the individuals for whom they are sharing and teaching makes all the difference. The Down Syndrome Association of Greater St. Louis is an organization that takes community seriously, and their members benefit from their commitment to that end. I have benefitted from that commitment. My daughter’s future is brighter because the DSAGSL is walking the path along with us.

Some of the best friends I have are those I’ve come to know through our local DSAGSL community group. The most amazing and inspirational moments have been when I’ve been able to share with new parents, through the New Parent Support of the DSAGSL, that a diagnosis that many say is not worth life at all is a precious child first and foremost. New Parent Support is a vital tool and true blessing to parents who find themselves on a path they did not anticipate. The beauty of humans coming together to care for, invest in, and share with one another is so very encouraging. Whether it be playing together with a group of toddlers, learning valuable information at a conference led by research pioneers, or walking with a few thousand close friends to show support, bring awareness, and celebrate our loved ones with Down syndrome, the DSAGSL provides true opportunities for fostering genuine community.

Thursday, March 14, 2013

A little blurb. For 3/21

Lately I’ve been asked to write a thing here or there for various purposes.  And I figure if I write them, might as well let them serve double duty as a blog post, right? Glad you agree.

This one was for the blog on the upcoming WDSD celebrations.

It’s always nice to have a reason to celebrate, and in the Down syndrome community, March 21 is a great day to do some big celebrating!

Chosen because of the numerical similarity to the medical name for Down syndrome (Trisomy 21, 3 copies of the 21st chromosome), 3/21 each year is a day to celebrate those we love who have Down syndrome and to make others aware of the intrinsic value of individuals with Down syndrome. Only recently has it taken on a larger audience, but World Down Syndrome Day (WDSD) is becoming a full-blown holiday in many areas. The blue and yellow that are held to be Down syndrome awareness colors are often seen in creative ways on March 21.

Locally, many families and groups celebrate WDSD in a variety of ways. Last year, my friend and I made iron –on transfers and created shirts that we and our kids proudly wore that day, telling those around us that we were “celebrating EXTRA blessings.” Some of our teachers and therapists also requested shirts when they heard we were making them, so there were many matching shirts bringing awareness at the school that our kids attended. It was an encouraging show of support and exemplified the love that these team members have for our children. We also took in blue and yellow frosted cupcakes to share with the classes of our kids, and we read books about Down syndrome and talked about how we all are different in some ways, but in the most important ways, we are the same.

There are many ways to celebrate WDSD and use it as a chance to bring up conversations with friends, family, and coworkers about why we are so proud of our loved ones with Down syndrome. Here are a few ideas and examples of what others have done.

· Take cookies or cupcakes to school/ work decorated with blue and yellow (the DS awareness colors). Make a little note with a picture of your child to leave next to the goodies in the break room inviting coworkers to celebrate with you.

· Pass out tootsie pops with different colored wrappers with a note that says we all look different on the outside, but it is what is on the inside that counts

· Read a book to your child’s class

Age Appropriate Books:

· My Friend Isabelle (ages 2-6)

· Hi, I’m Ben and I’ve Got a Secret (ages 2-6)

· Taking Down Syndrome to School (ages 5-10)

· Pass out World Down Syndrome Day posters

· Wear a Tshirt

· Post facts about DS or celebrate your child on Facebook, Twitter, or send an email to family and friends

· Mail a postcard to family and friends celebrating your child. One last year showed a friend playing the guitar with a note that said “Rocking his extra chromosome”

· Have a “Genes” day or Dress down for Down syndrome day at work. Have people donate the $ to the DSAGSL.

· Share a you tube video

· Just Like You Down Syndrome

· National Down Syndrome Society, Everyone Counts

So choose one of these or get creative with your own celebration ideas! Just make sure that you take this chance to tell someone about how proud you are of your loved one, how valuable and precious they are.
If you’d like to join a group for a celebration, come out to St. Charles for the 1st Annual StC WDSD Party! We would love to have you celebrate with us!

Celebrity in training

There’s been some things like web pages and booklets that have my pictures on them lately.  And lots of my friends are there, too.  Here’s a couple if you want to see them!

**Be sure to check out the page about WDSD. Some familiar faces helping the page be adorable! 

**This was the All Ability Expo where my cheer squad did a show.  I’m in there if you look for me. (5th picture from the top)

**And here’s our little email newsletter from the DSAGSL.  Each week I get to be up there in the top with my smile!

We heard that I’m also on one of those big signs next to the highway for one of my schools, but we haven’t seen it yet.  It’s on one of those like a TV that changes it’s picture every minute or so, and we haven’t been able to see if it’s me yet.


Friday, March 8, 2013

Big girl. Happy teeth.

I just got my teeth cleaned and I didn't cry once. First time that's happened. That means I'm a big girl. Mommy is way excited!!!

If you need some awesome friends to clean your teeth, go see my place!!

Hi girls!  Hi Dr H!!

Thursday, March 7, 2013

That's my van

With my kid in it. And my keys in it. And its locked. I'm waiting inside the building so that Kinlee doesn't know there's a problem. She might get dramatic.

I managed 2 dropoffs at 2 schools today,  both followed by successful child retrieval at the appointed times. But on drop number #3 at school #3 (for therapy) I changed my mind mid stream and uh oh...  Buckled child and keys locked in car.

Thankfully its great weather and she is blissfully ignorant of the issue. Playing with her Nabi and happy as a clam. I'm staying clear but in view so I can see when Daddy arrives.

Might be time to lighten up the schedule...  Good thing spring break of 10 days starts now.

And Daddy's here. Hooray.