Greetings from the Air

Greetings from thousands of feet in the air.

Yes, this Ds mama is flying to Cabo with some of her closest Ds mama friends from the Sisterhood.

Running at full speed day in and day out with 5 kids -- one teen, one tween, one redhead, one with Ds and one toddler.. Not to mention the dog, the cat, the fish and the husband. I'm very blessed, to be sure, but I haven't had a true break, a real respite, in many, many years and it's well-deserved.

Joining me are Lisa, Jen, Debbie, Irma, Gina and Laura Beth.

5 DAYS!!!!

So, pardon the shift in posts. I'm coming from a different place, literally and figuratively.

I will miss my family terribly, I'm sure, but for now, I look forward to the adventure which lies ahead...

Watching out for little brother...

John Michael really took Luke under his wing yesterday while Doug and I were looking at stones for a retaining wall in our backyard. 


Completely unprompted, he took Luke by the hand and began walking with him toward the gardens.

Luke loves John Michael ("Mah-ker" as Luke calls him) and it's mutual.

I would LOVE to know what John Michael is explaining to Luke...

and Luke replying...

Two peas in a pod, separated by 2 1/2 years, but bonded for life.

The Sisterhood 3 Year Anniversary-- Love and Friendship, all because of one extra chromosome...

April 5, 2009

L to R:  Sheridan (Lisa Lindsey), Gabby (Sheree Pham), John Michael (Monica Crumley, me) and Joaquin (Jennifer Sanchez)

I missed our anniversary by 20 days, but here's to celebrating 3 years of love and friendship, all because our little ones shared a common chromosome.

Little did we know that our play date would be the beginning of something amazing.  A bond of kinship, a Sisterhood, sometimes stronger than blood.  These moms "get it".  Our kids are all unique, but we all "get it". 

And one by one, the Sisterhood grew...
one precious chromosomally enhanced child at a time. 
John Michael and Gracie hit it off immediately!

Joey (on his tummy) melted everyone with his huge brown eyes.
(L to R:  Gracie, Joaquin, John Michael, Gabby, Joey, and Sheridan)

Our friendship continued to grow and was cemented even further when Jennifer Sanchez made the journey to adopt Sofia from the Ukraine, giving Joaquin a little sister with an extra chromosome.  The photo above is Jen's fairwell gathering before making the long journey to get Sofia.  (L to R:  Joaquin, Ainsley, Joey (tummy), John Michael, Christian (back), Sheridan and Annelies)

Since then, several more moms have stepped up to adopt a child (or two!) with Down syndrome.  These women have amazingly generous hearts and a love so deep, so humbling.

Many new sibling babies have also joined the group and more are on the way...

Sofia looks nothing like she did in her orphanage!  Isn't it amazing what love and care do for our little ones?

Here, my chubby Luke is checking out Christopher, another of John Michael's buddies.

 
Annelies peaking out from behind John Michael at Bishop's farm last fall.


(Gracie and John Michael last fall...)

The beauty of the Sisterhood, which is now over 80 moms strong, is that no matter what you're going through, whether it's a rough patch, a medical issue, a milestone celebration, an IEP question, or just need to vent or share, we are here for each other.  We care about each other and want our kids to make a positive impact on our society.  With moms like these in the Sisterhood, the Sacramento region has no choice but to make way for a new breed of kids with Ds (and their moms!)  We are standing strong and will continue to support each other and educate those around us about Down syndrome and our amazing kids. 

What do you wish for?

I often wonder what John Michael's deepest wishes are...  Or what he dreams about...


Do you ever wonder?

Just because they can't tell you, specifically, doesn't mean it's not there...

Greta told me yesterday, on her 7th birthday, that John Michael can live with her when she gets older.  She said she would love it.  I truly believe her.  John Michael calls Greta "Princess" and he is her prince.

I guess my biggest wish is for my children to continue to love and care for each other throughout life and to encourage and support each other in their endeavors.  There is do doubt that John Michael is loved beyond measure by his siblings.  I have great faith that John Michael will be one of those adults with Down syndrome that is a very independent self-advocate, perhaps living with a roommate in an apartment.  At least that is my wish.  And if he needs more support than that, he will certainly have what he needs.  But I know for certain he will be well cared for by his siblings when Doug and I are no longer around.  This little guy has had such a tremendous impact on us all, but especially his siblings. 

What do you wish for?

Master of the Trike

     One of John Michael's IEP goals is to ride a trike.  Earlier this year, through lots of practice at school, he finally learned to pedal a trike.  I was thrilled, only to find out he couldn't steer.  He would start off strong and run into anything in his way.  Steering didn't click with him.

     Fast forward 6 months and I see John Michael in our backyard pulling out his trike.  He starts pedaling and turns slightly to avoid the table.  I couldn't believe it!  We turned him around and he showed me that he was connecting steering with avoiding objects and turning corners!

     I was so excited, that I brought it out front to the sidewalk to see what he could do.  He fell over once and ended up in the street once, but for the most part, he is starting to get it.  Watch how he carefully watches where he's going.  Soooo exciting!!!

     To hear his sweet voice and greetings, turn up volume or click on link to watch in YouTube.

  http://www.youtube.com/watch?v=pGhX6CT5yyw

Dr. John Michael...making a house call...

"Ah yes, I hear the problem..."


"I can fix that..."


And if your patient is non-compliant...

:-)

Swinging good time...

It's been over two weeks since I last posted!
Mea Culpa!!

The weather has been off and on spring-like so the boys have been getting more outside time.

These two love to swing, climb, run, slide and laugh together.

It's hard to be grumpy when you get these kind of smiles!

Happy Spring!

SPREAD THE WORD...

Look at my handsome boy! When you use the words "Retard" or "Retarded" as a means of describing someone, something or even yourself as stupid or ridiculous, please think about John Michael. It is hurtful to me, Doug, Nic, Anna, Greta and someday, Luke, too. It's not a nice word and one day John Michael will understand what you are saying and his heart will be broken. I'll do my best to lift up his spirits as best as I can, but my heart, too, will be broken. The word is offensive and it isn't fair for John Michael or his many special friends to grow up in a world where it's okay to make fun of someone (even if not intentionally) because of their differences. 

If you use the word, please stop.  I won't judge you if you say it...  but don't be surprised if I gently remind you...

John Michael is counting on you to make a difference and so am I ♥

SPREAD THE WORD TO END THE WORD http://www.r-word.org/

Fireworks at Home Depot

Today, instead of going to preschool, John Michael (and Daddy) met his class for a field trip at Home Depot. Once everyone arrived, the kids went on a treasure hunt throughout the store and had to find a ladder taller than they are, pick their favorite color paint sample, count how many saws there are... there were about a dozen activities all preschool-related.  They also planted some sweet pepper seeds in the garden area and had lunch together.



When John Michael spotted this rug, he said, "Fireworks!"

Such a cool 3D rug!  I can see why he would think that!
After his nap, I asked him about the field trip and the fireworks at Home Depot. With a worried look on his face, he covered his ears and said, "Loud. Scary."

Silly boy.

Deep in Conversation...

Every once in a while, you get a heartwarming reminder of just how cool it is to have an extra chromosome.

Tonight, John Michael and I raced to Straw Hat Pizza to catch the tailend of a DSIA Pizza Night for adults with Down syndrome and their parents.  As a board member, I'd signed up to be there the whole time, but never actually put it on my calendar! 

While it would've been nice to have been there during dinner, I think the most important thing for us happened when the evening was almost finished.

When we walked in, we met Jeremy.  I could tell he was drawn to John Michael.  It was mutual.  They said, "Hi" and made small talk.  It didn't take long for John Michael and Jeremy to find a table and chat.  I used the time to meet a few parents who have many more years of experience raising a child with Ds and learned about some of the things they are concerned with... but that's another post... 

I love how attentive Jeremy was with John Michael. 

I think that's what struck me tonight.  We are always so busy, checking our cell phones, making sure to catch every message, every text, email, call, facebook, whatever...  Heaven forbid we should unplug and be present and in the moment!

He told Jeremy all about Elmo, sang and signed the "Slippery Fish" song and the "Wheels on the Bus" song.  (I didn't hear their conversation, but asked John Michael later on in the car what he and Jeremy talked about...) 

Jeremy listened patiently while this little 4 year old shared his deepest thoughts.

I asked Jeremy and his mom, both, for permission to snap photos and to post on my blog.

The memory this left me was one of great joy and hope.  John Michael, I think, reminded some parents of their children long ago when they were little.  It was nice to see so many parents of adults with Ds be friends and chat about things relevant to them and their adult kids' needs as they get older.  I know we'll have that with the friends we've made, too.  Long-lasting friendships with people who really know what it's like.  The good and the not so good. 

What about Jeremy stood out to John Michael?  I'd love to know...

Does he somehow "know" that they have something in common?

Time will tell...

For now, this sweet image will remain with me and I will cherish the memory.

Memory.

Mea Culpa!!!

Please forgive my slacking on blogging. We have seriously been hit HARD with the nasty cold and flu viruses around here and making its way through 5 kids took a couple weeks. Then, something new pops up and we're at it again! All the kids were in school today for the first time in 2 weeks. Let's just say, I was soooooo ready!

Memory.  Cognition.

It's something that I often joke is failing (in my brain...), but it's really no joke. My grandmother in Germany had Alzheimer's Disease in her 90's and it was a very difficult time for her family. My grandmother's son also died with Alzheimer's. So... it runs in my family. 

Knowing that, I felt immense guilt when John Michael was born with Ds and I read that people with Down syndrome have a greater probability of getting Alzheimer's Disease by age 40. Yes, 40!  I know there is research being done for this very reason (Dr. William Mobley is a leader in this area) and I am hopeful that by the time they find a treatment and it is approved for people, it won't be too late for John Michael. You know how research goes...

Well, the image above made me smile, which also sparked this post.

2 years ago, when I was pregnant with Luke, and John Michael was just about 2 1/2 years old, Doug's Uncle Piet, Aunt Bettie and great grandmother "Granny" visited from Holland (I posted about it back in May 2010).

John Michael fell instantly in love with his distant relatives, but was especially drawn to Piet. Something about John Michael drew him in and they enjoyed each other's company.

Piet used to do this silly thing by pulling on his ears and sticking out his tongue (see 1st photo above). John Michael thought it was hilarious and soon copied. The relatives visited only for a few weeks and John Michael hasn't seen them or had contact with them since.

So, I recently asked John Michael, "What does Piet do?"

And he immediately gave me a big smile, tugged on his ears and stuck out his tongue and then said, "Piet does."

This is sooooo cool!

We love to play little memory games with John Michael to get him to recall the past. But 2 years is awesome!  He wasn't very verbal at that stage yet, but he understood most of what you told him.  The fact that he could recall it, do it and say it was fantastic.  Just look at how little he ws back then!

Just had to share...

Double Trouble

Oh, yes... he gets that distinction all by himself.

The Elephant Hunter

The Elephant Hunter

Don't be fooled. 

Under this cute exterior, lies a very powerful
Elephant Hunter.

He means them no harm... he only wants to find them so he can wash the elephants and make them clean.

Meet his cute sidekick, who's not very serious about helping...

Filled with special water, The Elephant Hunter straps on his powerful backpack watersprayer and sets off on the hunt.

Where could those elephants be hiding?
Not here...

He senses their presence on the other side of the fence and calls them.

His trusty, red-headed assistant spots them! 

He lifts up his powerful water sprayer.

Shhhhhhh.... Shhhhhhh...  Shhhhhh....

His sprayer reaches the elephants.  All clean!

Job well done.

 Looks like Mr. Turtle could use a wash...

The end.