So much wisdom...from a pre-teen with Ds

Who wouldn't love this face?  :-) 

I love this!  Here is a link to a blog article you've gotta read! 

It's about a pre-teen boy who says he has Down syndrome only sometimes... 

So much wisdom...

Blast from the past... the DS Sisterhood is born.

Look familiar?

(L to R: Sheridan, Gabby, John Michael and Joaquin...)

I guess I'm feeling a bit nostalgic today.

This is the day the DS Sisterhood began... back in May 2009!

Little did we know that by meeting with our littles that afternoon, we would begin a friendship that would continue to grow and flourish.

Look at Sheridan, still on his tummy rocking his "fro-hawk". :-)

Miss Gabby, our little fashionista, was the lone female and for months after we wondered how long boys would outnumber girls... (not the case anymore!)

And handsome Joaquin, who always has a smile to share.

John Michael was the "big boy" of the bunch. Can you say chunky monkey?

Since then, our local DS Sisterhood has grown to, I don't know, 24 or so moms and their genetically enhanced kiddos. A few are slightly older than John Michael, just over 3 and already navigating the IEP/school system. Others aren't even one year old yet.

Today, most of our children are at some stage of mobility, army crawling, cruising and walking. The days of setting them on a blanket and chatting over a Starbucks latte are over as they no longer stay in one place for more than a few seconds. Group photos aren't as easy, either, but I wouldn't take back a second of it. These moms, and the new ones since, mean so much to me. I never had a sister, but I feel very close to them as we navigate our way through the ups and "downs" of having a child with Down syndrome.

I'm so glad I don't have to do it alone...

Losing John Michael (for 5 minutes!)

Last Saturday, we visited the California State Fair.

Do you remember this photo, below, from last year?  It was my blog header for quite a while.  This year, the bear was too hot (Greta was tough) and it was painted... it's no longer gold.  It's funny, Greta looks so much older now and last year,  John Michael didn't even need shoes yet!

The State Fair is something we look forward to every year.

This year, however, something very scary happened.

After lunch, we went inside the building where all the County exhibits were displayed and somehow John Michael escaped and wandered away. 

We LOST John Michael! 

I was the first to notice he was missing and immediately sent the big kids and my husband in different directions to find him. The scary part is that he won't respond verbally when we call him. At home, he may come walking over, or turn his head, but in a huge exhibition hall, there's no way he'll come to us if something catches his eye and forget about telling someone his name or our names.

We found Security and just as we finished describing him, a female Security Officer came walking down the stairs with John Michael in her arms. He climbed stairs to the 2nd floor, which none of us had even thought to check! My heart was racing, my senses on high-alert, but I did remain fairly calm and collected.  Once he was in my arms, however, I cried... HARD!  We'd failed him.  We'd failed to protect him.  We took our eyes off him for a split-second.  It was the worst 5 mintues of my life!  This is how kids drown...  I thought to myself. Thank God he didn't get outside of the building!

I've always thought child "leashes" were strange, but now I can see why some parents resort to them. I'm not there, yet, and I pray this never happens again.  But when we got home, I ordered Velcro ID bracelets (Vital ID Inside) for John Michael and Greta as well as rubber bracelets with their names imprinted from another company.  I don't know which he'll prefer wearing (hopefully it won't be a struggle!)  I'm not risking our kids being unidentified if we should get separated again. For me, the Fair was over. We went home, everyone took a much-needed rest, and Doug took the older 3 back to the Fair after dinner for rides and fireworks. 



But let me say... everything was fine before John Michael wandered off, which was around 2:30. When we first arrived at 10 am, we headed to the Youth Art Exhibition Hall where Nic picked up his 2nd place ribbon for his oil pastel snake eye. You can see the snake eye over his left shoulder hanging in the display case. That is my favorite part of the Fair... seeing kids' art. So much talent in one room.  We even got two free tickets and free parking because of his award. Nice little "bonus".

John Michael wasn't too interested in touching the baby alligator...

The last photo I took of John Michael and the kids before... you know...

Thank God he made it back to us safely and quickly!

The DS Sisterhood hits the trails...

We call ourselves the DS Sisterhood... and this is just a small group!


This is one very active group of moms who all met because we have a child with Ds (Jennifer has 2!).  But being pregnant and recently having Luke (5 1/2 weeks ago), I was feeling a little bummed that I couldn't keep up with this group on all the outings, DS Mama Bootcamp, movies, swimming, etc., so I invited them to our house for a walk on our nature trails, with or without children.  My husband, Doug, set up a frozen yogurt bar with toppings for afterward.

L to R... Monica with John Michael, Lisa with Sheridan, Gina and Gabe, Susan, Cori with Joey, Debbie and Jennifer with Thomas the Tank Engine.  Tonight, a couple more moms are coming...

Here's our little buddy, Sheridan.  This is our first visit since his heart was fixed a couple months ago.  Such a big boy!

John Michael and Joey are playing with the ball toy and Sheridan is giving us a beat.

Big brother, Nic, and John Michael are doing the motions for Itsy, Bitsy Spider...   "Out comes the sun..."

I'm looking forward to seeing more moms tonight! 

If you can't join 'em, invite 'em over to your house!

Is it "Wordless" Wednesday already?

John Michael is getting lots of practice being a helpful, loving big brother to 4 1/2 week old, Luke.  And since John Michael is a Binky junkie, he thought Luke should have one, too.

A gift for Luke... I love this shirt! So cute!



I wasn't sure how John Michael would react to Luke lying in his lap, but he was good... until Luke started fussing.



Cute, eh?  Well, this isn't the whole picture... if you know what I mean. It's just a quick snapshot in time. Less than a minute later, Luke started crying and John Michael wanted nothing to do with him :-0 However, I'm hoping that this coziness becomes a familiar scene as these two grow up together.

And, another glimpse into the future...  John Michael is very generous with kisses.  It totally melts my heart!

As if you couldn't tell already... I am super in love with all my children, even if Luke and John Michael are getting more attention these days.  But one thing remains, no one can take the place of John Michael in my heart.  There's just something incredibly special about him and I'm so proud of my big boy!  So proud of all his accomplishments and milestones.  Having Luke after John Michael puts it all in perspective again, and I realize how much harder John Michael has had to work to get where he is today.  LOVE that boy!

Happy Independence Day!

Greta with our "Little Firecracker."

Happy 1 month old, Luke!

Two more of my favorite guys. John Michael (with Daddy) making his way to the slide.

"Wheeeeeeeeeeeee"

John Michael giving Luke a quick, slobbery kiss on the head.

How are you spending your Indepedence Day?

Nic and Anna are in Mt. Shasta City with my parents (LUCKY!).  The small town at the base of the 14, 162 ft volcano has a population of about 3,500, but 5,000 people from all over participate in the annual 4th of July Run/Walk!.  There's also a small town parade and fireworks over Lake Siskiyou.  We wish we could be there this year, but I wasn't ready to travel with a newborn.

We are trying to stay cool here in the valley. We partcipated in a neighborhood parade this morning, with bikes and strollers and dogs decorated for the occasion while a few senior citizens sat at the curb outside their homes cheering us on.  How is it that I didn't get any photos?!?!  We ended up in the park where I snapped a couple shots, but still couldn't manage to get everyone together at the same time.

At 99 degrees today, we're doing our best to stay cool, but that's nothing compared to the temperature in Afghanistan where my brother-in-law was deployed just a couple weeks ago for his second Middle East tour of duty. He says it's "only" 110 degrees, so it's not too bad, yet!

I just want to say, I'm grateful for his service to our country and the huge sacrifice of him being away from his wife and my darling 3 year old nephew for the next year. Freedom comes with a price and I just want to say "Thank You to all our Troops!"

Happy Independence Day!