A Winter Wordless Wednesday

John Michael at Empire Mine National State Park in Grass Valley, CA, the day after Christmas. 

Gold was all the rage in this part of California from the late 1840's until the early 1900's.  One of the mine shafts we saw was 8,000 ft long and went deep underground.  That's 1 1/2 miles!  Of course, we only went about 30 feet down.  We learned all about different gold-mining techniques and that some mules spent their lives underground pulling mining cars. 

Greta, Anna, John Michael and Nicolas on the porch of the mine's Clubhouse.

.

John Michael enjoying the crisp air on the grounds of the mine.

This past Monday, we took a day trip to San Francisco's California Academy of Sciences in

Golden Gate Park.  John Michael enjoyed the living rooftop view, looking out toward the tower of the de Young Museum currently hosting the King Tut exhibit.

John Michael was thoroughly fascinated by the giant, 2-story fish aquarium.

I Need a Silent Night...

I've made the same mistake before
Too many malls, too many stores
December traffic, Christmas rush
It breaks me till I push and shove

Children are crying while mothers are trying
To photograph Santa and sleigh
The shopping and buying and standing forever in line
What can I say?

I need a silent night, a holy night
To hear an angel voice through the chaos and the noise
I need a midnight clear, a little peace right here
To end this crazy day with a silent night

December comes then disappears

Faster and faster every year
Did my own mother keep this pace
Or was the world a different place?

Where people stayed home wishing for snow
Watching three channels on their TV
Look at us now rushing around
Trying to buy Christmas peace

I need a silent night, a holy night

To hear an angel voice through the chaos and the noise
I need a midnight clear, a little peace right here
To end this crazy day with a silent night

What was it like back there in Bethlehem
With peace on earth, good will toward men?

Every shepherd's out in the field

Keeping watch over their clock by night
And the glory of the Lord shone around them
And they were so afraid

And the angels said fear not for behold
I bring you good news of a great joy that shall be for all people
For unto you is born this day a Savior, who is Christ the Lord
And his name shall be called Wonderful Counselor, Prince of Peace

I need a silent night, a holy night

To hear an angel voice through the chaos and the noise
I need a midnight clear, a little peace right here
To end this crazy day with a silent night
To end this crazy day with a silent night


Lyrics by Amy Grant from her Christmas Collection

 

  John Michael and his family wish you all

a Silent Night and a Holy Night.

 

Merry Christmas.

 

We wish you a...

Merry Christmas



and a Happy New Year!

With love from John Michael and his family!

Look what I can do... at 2!

It's been a while since I've posted an update on John Michael's abilities. 
There's so much to write, but I'll condense it into the biggies.

John Michael has had an explosion in gross motor skills, like walking... FAST and not falling too much anymore. He can use a step stool to climb up on the rocking chair to rock, or reach the bathroom sink to throw stuff in, or to climb over our big bath tub and get in.

His receptive language is expanding to the point where he'll follow a simple direction to bring something (like his poopy diaper) to the kitchen from his bedroom. He still doesn't listen to the word, "No," but distraction works most of the time.

His language skills are increasing. He is learning new signs rapidly and freely using the ones he already knows. He's pointing and making choices (like milk vs. juice or spaghetti vs. soup). He's making many beginning sounds when prompted and makes lots of animal sounds on his own. Baa, nay nay, oi oi (for pig), hoo hoo (owl), grrr for tiger, and a hilarious blast of air with his juicy lips for elephant, while raising his arm up high for the trunk. His rooster sound is unrepeatable by any other human, unless their trachea is also "floppy". It's hilarious! If I could, I'd take him to San Francisco on a street corner to put on his "show". He'd have everyone in stitches and maybe we'd earn enough to make it a viable side job :-)

Cognitively, he's right at about 23 to 24 months, according to the Denver test, which is fantastic. I'm loving this new boost in learning. While he was learning to walk, his language skills slowed way down and he was pretty quiet for a while. He's mastered walking quite well and I guess his brain is now ready for the next challenges.

He continues to give hugs and kisses freely and often unprompted. Says Mama and Dada when he sees us. Recognizes family members in pictures, points to familiar objects in books, says "Oma" and "Opa" for my parents and Doug's mom, and is learning to make the Sign of the Cross for prayers at mealtime and to fold his hands. It's precious. I can't get enough of this little guy.

I can use my fork to eat cubed liverwurst sandwiches.  YUM!

(Yes, my mom knows what it's made from -- she's German!)

And look how neatly I can bring the fork to my mouth. I love to eat all textures, except green food.

I can spot a green bean a mile away and spit it out even if it's buried in other food.

I love to pretend I'm swinging on bars at Greta's gymnastics studio.

Big sis, Greta, after her Holiday Show this morning.

The Child King -- A Must-See Family Film!

http://www.thechildking.com/trailer.html

The whole family LOVED this film.  It's not blockbuster quality, but it's very good quality for an independent film.

It features two brothers, a 15 year old boy, Jeremy, who has Down syndrome, and 6 year old, Jarrett, who no longer believes in Santa Claus.  The boys recently lost their mother and are dealing with it in their own way.  But when Jeremy learns of Jarrett's disbelief in Santa Claus, he goes on a mission to take his little brother to the North Pole to find Santa and prove he's real.  The driving scene in the trailer had me in stitches.  There are many sweet moments between the brothers and Jeremy is an awesome role model for Jarrett.

There are two subplots, featuring the story of The Child King which the boys' mother used to read to them.  It is acted out in between scenes throughout the film.  The other subplot is the dad trying to find his sons who seem to have run away and taken the SUV with them.

The adventure these two find themselves on, with very little money, and the people they encounter along the way, both good and slimy, make for an enjoyable adventure.

The best part is how they positively portrayed a teenager with Down syndrome.  Jeremy is smart, clever, strong, a caring big brother, responsible, and best of all, stands up for himiself when someone calls him "stupid."  I love that he doesn't just "take it" and walk away.  He remains strong and I love his character.

I believe the film is only available through the website, but it was so worth it.  I will share the film with my local friends, which makes the $20 spent worth it.

I hope you get a chance to see it... then let me know what you think!

Dear Blog + Wordless Weds

Dear Blog,

Please forgive me for my extreme neglect. I've let an entire week go by without a post of substance.  And it's been even longer since I've posted something more than a few photos. I have a big post in my head and that's part of the problem -- getting it on "paper" or at least finding the time to sit down and type.  I know you know how busy our family life is right now. If you need a reminder, these photos will remind you of how John Michael keeps us busy throughout the week. I promise to do better.

Always, Monica

(PS:  If you follow us on Facebook, I apologize for the repeat in photos...)

And so it goes... another morning in the Crumley household with John Michael exploring his world.

It just had to be a brand new box of Panda Puffs!

"What? Did I do something wrong? Why can't I eat the Panda Puffs?

Dog hair stuck to the cereal doesn't really bother me too much."

"Look, Mama, I'm a big helper.  I'll put some back in for you. Will that help?"

Sigh.

Wordless Wednesday -- Lifestyle Photography Session

We tried something new this year... "Lifestyle" photography for our family photos. I think Penny Sylvia did a great job of capturing our family at the California State Capitol gardens in Sacramento. Here are just a few of my faves... (there were too many to post!)

Photos by Penny Sylvia Photography

John Michael's 2nd Birthday Party

What an amazingly fun afternoon! We had 40 friends, about 1/2 children, help us celebrate John Michael's 2nd birthday this past Sunday. I know... the rule of thumb is one guest per the child's year of age. Well, John Michael has way more than 2 friends! That extra 21st chromosome has translated into so much more than any book will tell you. We have added more than 8 new families to our circle of friends this year (which equals lots of people when you add all the sibs, too!)



Here, John Michael actually blew out his first candle ever. He successfully blew out the #2 candle, but I helped with the other two smaller ones.

We had a diverse age group of children from 9 months to 13 years old and everything inbetween. Having 8 kids here age 2 and under with Ds, I decided to hire one of the music therapists to entertain the younger set. I think every one of John Michael's buddies gets music therapy, so it was great that they were all familiar with the songs and playing with the instruments. The older kids watched "Up" in our "garage-turned-movie theater".


John Michael also got to meet his new buddy, Christopher. The moment Christopher came in, he went right up to the music therapist and started playing along with everyone. I love his enthusiasm and infectious smile! John Michael really likes his new buddy, too, as you can see in the photo. At first glance, they could totally be brothers. So cute!

Here, Gracie and Gabby are enjoying tug-of-war with the ribbons. John Michael had so much fun opening his presents and is still discovering how everything works.

HAPPY THANKSGIVING EVERYONE!

My blog will be quiet for the remainder of the week so I can spend time with the family UNPLUGGED!

NICU Days -- Wordy(less) Wednesday

Our flaccid, newly born John Michael, just minutes old. A few minutes after this photo was taken, Doug and I were given the life-altering news... "It looks like your baby has Down syndrome." November 14, 2007

Day 5 in the NICU after John Michael was born. It took five days before I was allowed to hold him and for him to try to take 2 ounces. He kept falling asleep, so he took the rest through a tube.

A heavenly moment for me, filled with tears of love and joy and fear.

Oma Crumley (Doug's mom) holding her 5th grandchild just after I fed him his first bottle. All those wires and cords bring back some very difficult moments.

I love this photo. A sweet smile and it reminds me of how today he's always signing "more" when he's enjoying something and doesn't want it to end. Here he just had his canula removed and his cheeks are red from the tape being removed.

November 22, 2007. Thanksgiving Day! What an immense blessing to bring our baby home on Thanksgiving Day. Here, Daddy and John Michael, wearing his going home outfit, are waiting to be discharged. Doug and I were both nervous, but trusted in God's providence that all would be OK and that He knew better than we.

I so want to go back to that scared couple 2 years ago and tell them that it'll all be OK. It'll be more than OK! His siblings will adore him and more friends and wonderful people will fill their lives than they could ever imagine. I just wish I could've known all that then.

I have a new friend, Amy, expecting her first baby in early December. Her baby girl has Down syndrome and Amy has been so brave while getting to know some of us before her baby is born.

Dear Amy, I want you to know what we parents already know... It's going to be more than OK. Your baby girl is so lucky to have you and I can't wait to meet her.

OK, tears are falling now... and my Wordless Wednesday has turned into a Wordy Wednesday!

The Year of New Friends

(click to enlarge)

John Michael turned 2 this past Saturday.

Sadly, it was such a busy day (and weekend) that I only spent about 45 minutes with him on his actual birthday. We'll make it up to him next weekend and have photos, too.

Given that his birthday came and went without fanfare, I wanted to reflect on the incredible year we've just had since John Michael turned 1.

In just 12 months, John Michael (and I) has made more friends than I ever imagined. Our "awakening" began when we had our first get-together in East Portal Park. We planned to meet Jennifer and Joaquin and their family and some other moms and kids that would come. We never imagined that this casual gathering would lead to many friendships and continues to grow.

This past year I've posted many photos of our kids together at parks, in our homes, at a birthday party, a baby shower, at the NDSC Convention and most recently, the Step Up for Down Syndrome walk. Most of us moms are bloggers, which makes it fun and interesting as well.

I just want to acknowlege all the wonderful moms who I count among my new friends this year. Local friends include Jennifer & Joaquin, Lisa & Sheridan, Sheree & Gabby, Jonna & Gracie, Cori & Joey, Gina & Christian, Susan & Christopher, Lisa & Jase and Amy and her soon-to-be born baby girl. I had the pleasure of meeting even more moms and their sweet children at the NDSC Convention this summer. Thanks to Facebook, blogging and the internet, there are too many to count!

Thank you for making this The Year of New Friends!

Wordless Weds -- John Michael, the Artist and Happy Veteran's Day

Today, I want to share with you John Michael's newest masterpiece. Big sister, Anna, is being an incredible helper this morning and keeping him occupied while I get ready for music therapy. She sat John Michael down at his little table with paper and colored pencils and he got to work. The top picture is his first masterpiece, but because the colors are so light for scanning, Anna gave him markers to make a second masterpiece.

I love the colors and movement. I call it Freedom (of expression). :-)

I also want to say Happy Veteran's Day to all the men and women who have served our country, but especially to my brother-in-law, US Army Capt. John Paul Crumley who recently came back from a 15 month tour of duty in Iraq. He and his family are now in Missouri. We miss you guys!

Name Tag Game

Jennifer of Three's A Charm tagged me with the "Name Tag" game. I'm supposed to explain why I chose the names I did for our kids, so here goes...

From oldest to youngest:

Nicolas Frans: My parents are immigrants from Germany and Doug's mom is from Holland, while his dad, from Tennessee, has German and Irish roots. I wanted a strong name for our firstborn and really liked the name, Nicholas, but the "h" didn't seem to fit in with our heritage. I liked how Nicolas Cage spelled his name, it looks great on the silver screen, so I copied the spelling, which seemed more Dutch than American. The German spelling, Nickolaus, was too different for me, so we stuck with Nicolas. Frans is Nic's middle name, named after Doug's grandfather from Holland who died when Doug's mom was just a teen. Although he never met his grandfather, he bears a striking resemblance to him from a certain photo. Doug wanted to honor his Opa Frans with a middle name for our son.

Anna Marie: My dad's mother's name was Anna Jaekel and I was given her name as my middle name, although my parents Americanized it to Ann. I'd always loved the name as it is timeless and classic. The middle name, Marie, is for three people. First, Doug's mom's "real name" is Maria, so we honored her with a form of the name. Then, my grandmother from Germany, Else Oldenburg, had three middle names, with Marie being one of them. Finally, my dear Aunt Marie from Mississippi, who married one of my dad's brothers, was the only aunt I had in the States. They lived only a couple miles from the home I grew up in and I wanted to honor her for passing on her Catholic faith to me.

Greta Marie: I used to work for the Air Resources Board (State of Calif) and at least once a week, we'd walk to a great cafe called "Greta's Cafe." Also, the mom of my college roommate had a little schnauzer named Greta. I'd always loved the name and it has German and Irish roots. I have an aunt in Germany named Gretel, which was a little too German for us and Gretchen was more cutesie, so we chose Greta. With her shiny red hair, she really looks like a Greta. The middle name just sounded right, so nothing very creative there.

John Michael: I've posted about his name before, but it's been a while. Doug's brother's name is John Paul and my brother's name is Michael, so we melded the names together to created John Michael. I love the sound together, not separated. He's not a Johnny, or a John, or a John John, or Michael... he's John Michael. Before he was born, John Michael was "Thomas" up until the last few weeks. I love the name Thomas, but somehow it didn't feel right for this baby. John means "God's grace" and Michael means "one who is like God." With strong names like that, it totally fits our little guy who shows us daily his strength and love and grace.

Now I tag: Darlena from the Lehnick Family

Sharon from Brennan's Beginnings

and Chris from Mothering by the Seat of my Pants

Oh, Play Doh!

Greta was playing with Play Doh, so I thought I'd see what the little Mr. would do with it.

At first, he didn't want to touch it. Then, I made "spaghetti" and "worms" with it and taught him how to roll it with the rolling pin.

Shortly after, I introduced the wavy cutter and he was sort of getting it.

I was so proud of him for NOT eating the Play Doh. And then it happened...

He took a bite out of one of the "worms" and it was over. Fortunately, the stuff is non-toxic and tastes horrible, so hopefully that will motivate him not to eat it next time.

Has anyone else tried Play Doh?

Is that James Dean, or...?

Yesterday was Greta's preschool's Halloween Party.

Greta was a cowgirl and John Michael was James Dean, minus the cigarette.

I'd originally planned to dress him as a cuddly teddy bear, but when I stumbled upon this faux leather jacket for $2 while searching for Halloween dress-up stuff for Nic and Anna at Goodwill, I couldn't resist!

I love how the light and shadows play upon his sweet face.

Whenever I ask John Michael to smile, this is the face he gives me.

He loves taking Greta to preschool. There are always fun, tactile things to play with.

Greta and her friends had fun hammering golf tees into a pumpkin.

I wonder what the pumpkin looked like at the end of the day :-)

HAPPY HALLOWEEN!

Clip of John Michael playing piano

I just missed it... John Michael said "Mama" two times just as I started recording.

What I love is how he mixes up the sounds, changes the tempo and dynamics to suit his mood. And he really listens to the notes as he ascends the scale with his sweet, chubby little fingers. Music has been one of the greatest gifts to our family and a common language we all speak. Words are not necessary...

John Michael's Friends "Stepped Up" for Down Syndrome

Yesterday's "Step Up for Down Syndrome" walk was wonderful! The weather was perfect and we had a great turnout of almost 40 walking alongside our family.

Totally appropriate for the occasion, John Michael spent a lot of time "steppin' up" and walking on his own. He got to about 16 steps and was enjoying interacting with people.

He especially loves his Oma (Doug's mom). I love this photo of them walking slowly hand-in-hand.


Greta and her BFF holding up a poster made by the NDSC.

Many of Nic and Anna's classmates and their siblings joined us. It was great to see so many tweens and teens at the event. Thanks to Joanne for making posters. The one on the right says, "John Michael, You are something to crow about." It cracked me up because John Michael makes the funniest rooster sound.

Here's our team. John Michael rode in style in the wagon, waving a flag.

We couldn't pass up a quick photo op with his little buddies. Look how our group is growing! Gracie, Joaquin, John Michael, Gabby, Joey and Sheridan are some of the luckiest kids to be growing up together.

BUSTED!

BUSTED!

Now what?

I'm guessing that look on Mom's face means get down...

I think I'll just walk away and be cute... She can't be mad at for me for long.

My Poster Boy for the More Alike Than Different Campaign

I love this! It came just in time for our Step Up for Down Syndrome walk this coming Sunday, October 25th. Maybe I can get some posters printed in time...

The NDSC is offering this fun, free service to anyone who submits a photo of their child or an adult with Down syndrome and a short blurb on something that they like to do or some special talent they have.

This was a no-brainer for me. While John Michael loves to do many things, his first and foremost all-time favorite activity is to make music, sing and dance. This boy has music in his soul.

While music is in his genes, I like to think that some of his musical interest developed while I was pregnant with him. I was 4 1/2 months pregnant when I toured with my vocal group, RSVP (Reconciliation Singers Voices of Peace) to Houma, New Orleans and Slidell, Louisiana, the summer of 2007. That boy lived and breathed and developed while listening to some gorgeous vocal music as well as instrumental sounds from the United Nations Youth Symphony, all the while uplifting victims of Hurricane Katrina.

If you'd like to have NDSC make a poster for your child, here's the link http://www.ndsccenter.org/morealikecode/.
It takes a few weeks for them to get it back to you.

My talk to 7th Graders about Down syndrome

This past Tuesday, I went to Nic's 7th grade class to speak about Down syndrome. The purpose for my visit, was to prepare those 7th graders who are participating on John Michael's team in the Step Up for Down Syndrome Walk coming up on October 25th.

It was an easy audience to do my inaugural talk on Ds. They all love John Michael, who was in the classroom with us, but none have ever asked anything about him or Down syndrome.

I only had about 25 minutes to speak before the end of the school day, so I opened up by talking a little about what Down syndrome was and how the extra chromosome affects John Michael physicially as well as his ability to learn, that it's not a disease that you can catch and it can't be cured. I showed them a quick PowerPoint slide show that I made up with some Ds facts and photos of John Michael.

Once I had them hooked into the topic, I spoke about the R word. I acknowledged that everyone in the room, at one time in their lives, has probably said the R word to mean something was stupid or dumb. I told them that the R word is like hate speech to people with intellectual disabilities and that we need to replace the R word with the word Respect. When you use the R word around people with intellectual disabilities, it is a cowardly act, because their feelings will be very hurt, but they probably won't fight back. I don't know if they ever thought about the R word and John Michael at the same time, but I asked them to think about him if they were ever tempted to say the word. I then showed them 2 short PSAs about the R word. They really liked that.

The Arc "Respect" PSA http://www.youtube.com/watch?v=gM96e0yWjhI&feature=related

End the R-Word http://www.youtube.com/user/SpecialOlympicsHQ#p/f/9/gXg5Q0dI6nM

Finally, I wanted to talk to them about the many different faces they'll see at the Walk. I told them that it's OK if seeing older children and adults with Ds makes them uncomfortable. Acknowledge and accept the fact that you're uncomfortable, but resist the urge to make fun of people just because they look or act differently than you. If someone with Ds approaches them at the Walk, I suggested the best thing to do is smile and say 'hi' and realize that they are more like you than different.

At the end, I showed a 4 1/2 minute video essay called "Difference is an Artist's Game" presented by an 8th grade girl who has a younger brother with Down syndrome. This is a very powerful video and she asks some very deep, pointed questions of the young audience. She relates her brother to a Picasso painting. It's very beautiful and moving.

Difference is an Artist’s Game. http://www.youtube.com/watch?v=MO911lWVGpQ Must see!

We didn't have time for questions and answers as this brought us up to the very last minute. I even had 2 more PSAs to show and couldn't get to them. I could have easily spoken and shared with them another 10 to 15 minutes if we'd had the time. The room was silent throughout the talk. Afterwards, several came up to me thanking me and some told me they really wanted to do the Walk. So far, we have 8 families registered from Nic's class, bringing our team total to over 25.

The links below are also excellent and I didn't get to show them. That evening, the 3rd grade teacher whose classroom we had used for the Smart Board, asked if I could come talk to her class, too. She was very moved by the talk. Yes! I would love to!

More Alike Than Different http://www.ndsccenter.org/

BE A FAN – “R” WORD CAMPAIGN http://www.youtube.com/watch?v=oRUOL5Rm2XY&feature=related

Wordless Wednesday -- Dancing Like the Stars

John Michael this morning... he LOVES this toy.

Greta and John Michael dancing like the stars...

Who wouldn't want to dance to music like that?

Some cool PSAs and a video essay on Ds

I'm preparing a short talk on Down syndrome for Nic's 7th grade class this afternoon and have compiled a few PSAs and a beautiful video essay from a sister to a boy with Ds.

Difference is an Artist’s Game. http://www.youtube.com/watch?v=MO911lWVGpQ Must see!

More Alike Than Different http://www.ndsccenter.org/

BE A FAN – “R” WORD CAMPAIGN http://www.youtube.com/watch?v=oRUOL5Rm2XY&feature=related

End the R-Word http://www.youtube.com/user/SpecialOlympicsHQ#p/f/9/gXg5Q0dI6nM

The Arc "Respect" PSA http://www.youtube.com/watch?v=gM96e0yWjhI&feature=related

Slideshare show on T21: http://www.slideshare.net/samnham/down-syndrome-born-with-extra-presentation?src=related_normal&rel=661306

Wordless Wednesday -- My Piano Man

John Michael could easily sit and play piano for 30 minutes at a time. He loves it! It's great for his fine motor skills as he's tinkering on the black keys. It's also great for his concentration and listening skills. He loves mixing up the sounds going from pianissimo to forte and from dolce to pesante. Adding to the fun is John Michael swaying to his music and singing along. I think we just might have the beginnings of a music maestro.

What do you see?

What do you see?

I see a beautiful boy, who is full of love in its purest form, sitting contentedly with his Opa (my dad), who's originally from Germany. I used to be afraid of the diagnosis of Down syndrome. I didn't want my child to be different from his three older siblings. What I didn't know then, and what I know now, is that he is not a diagnosis. Not even close. Yes, he has some of the characteristics of someone with Down syndrome, but he is first a brother, a son, a grandson, and a great grandson (to Granny in Holland) and an all-around important member of this family and our community.

My parents were here this weekend for the Oktoberfest and my birthday. John Michael couldn't get enough of kissing his Opa. When they arrived on Friday for Kaffee und Kuchen (coffee and cake), he recognized him right away and when we asked him to say, "Opa," he said "Ah-pa!" And not just one time, either. That was very cool!


I found this link, below, at the NDSC website. It might take a moment to open, but it's worth it.


What do you see? I only see beautiful faces.


http://gallery.me.com/tymattson#100173

Thankful Thursday

(Here's our family at a beautiful wedding a couple weeks ago)

**********************************************

I just can't get over this thought...

There are so many wonderful people that have come into our lives this past year.

I'm in AWE! And so thankful!

All it took was for one little boy to be born at the right time in history, to the right family, in the right order, with a particular extra chromosome in the right place.

Unbelievable.

I am thankful to my incredible family, all the people who read my blog, and to those whom I've met in person, or through blogging, Facebook, and the NDSC Convention in Sacramento this past July.

Thanks for being there for me! The journey is so much sweeter with friends in all the right places.

HAPPY DOWN SYNDROME AWARENESS MONTH!

Guess who said "Mama" today?

22 months, 9 days.

That's how long I've waited for this momentous milestone.



No, it's not climbing up the slide.. which is cool all by itself.

Or showing me how proud he is of himself once he gets to the top.

Or the fact that he can stand and "drive the car" while his hair stands tall with static.

Or that he can slide down all by himself without help.

These are great things.

But today, during John Michael's private music therapy session, he verbalized many new sounds, such as puh, nuh, and muh.

Yes, muh. And then with some encouragement and some patience on our part, it happened.

He said "Mama". Over and over again.

Not just once, but a couple times.

He was sitting on my lap and I started crying. I didn't cheer him on because I didn't want him to notice that if he says "Mama", I'm going to cry. So Carly, his MT, cheered for me, for her, for him. It was awesome.

It's always exciting to hear "Mama" for the first time, but with a child with Down syndrome, I've had to be extra patient.

Today is my day and I'm going to bask in this feeling for a long, long time.

Cross Country Meet

Anna ran in her first cross country meet yesterday in upper 90 degree weather. Even after her 1.25 mile run, she was all smiles and ready for another mile. Way to go, Anna!

John Michael was all smiles for big sis, Anna. His daddy's camp hat looks mighty cute on him, too.

Wordless Wednesday

GOAL!

Well, not really.

Not as in... he scored a soccer goal.

But, at Anna's opening soccer game this morning, John Michael was all smiles as he showed off his latest achievement of standing unsupported and taking 2 to 3 steps. To that, I say

"Goooooooooooooaaaaaaaaaaaaallllllllll"


I'm guessing that by the end of soccer season, which will be John Michael's 2nd birthday, he'll be ready to kick the ball. That would be a fun goal to work toward!



John Michael loves to climb on Nic, who loves every minute of it!

Nic noticed that JM's ball, jersey and shorts are all Adidas. Now we just need to get Adidas to notice :-) I'm not sure if they have any kids with Down syndrome in their ads, but there's a first time for everything.

Wordless Wednesday (Late) -- My Oddballs

Starring...

• Nic as Bigfoot
• John Michael as the Magic Dwarf
• Anna as the Lizard Person, and
• Greta as Tahoe Tessie

I got shoes...

John Michael may not quite be walking independently yet, but he can stand for 10 to 15 seconds all by himself without holding onto anything and is cruising everywhere, indoors and out. Today, I decided to get his feet measured at Stride Rite and buy him some durable first walkers. His size... 5 1/2 XW, as in extra wide. LOL.

I asked him, "John Michael, can you show me your shoes?" and he pointed to his cool new shoe.

He's discovering that they're good for more than walking... they can even help when climbing up the slide.

100th Post! -- Major Milestones!

My 100th post! For me, a major procrastinator and non-finisher of projects, this is a major milestone! If it weren't for the all wonderful comments I've received and all the other inspirational Ds bloggers out there, I don't know if I would've continued. I honestly didn't know when I began in July 2008, whether I'd stick with it. It was just an experiment, but it's here to stay. I'm hooked!


I was reflecting this past week on what to write for my 100th post and how to tie it in to John Michael. Since the beginning of my blog, I've been publicly celebrating John Michael's milestones, great and small. For my 3 typical kids, major milestones came without much effort and all happened within the standard timeframes. One day, you turn around and your one year old is walking. We celebrated the big ones like sitting up, crawling, walking and talking. But with John Michael, before each major milestone occurred, many mini-milestones had to happen along the way -- all the little in-between steps. Each victory was a cause for celebration in our home and another reason to post to my blog.

John Michael's newest milestone, at 21 months old, has been standing for 5 to 8 seconds unsupported and taking one to two steps forward. He puts his hands out for me to pull him up, lets go of my hands, and with his hands chest level, feet apart and hips balancing his weight, he takes a step forward and literally falls face-first into my chest. It's hilarious! We do this about 15 times in a row until his legs are too tired to stand again. It's quite an amusing game!


Here, John Michael is actually doing the work himself. Pulling up to stand with the help of the box chair, letting go and then grabbing onto the chair again. Getting a photo was quite a challenge since it all happens so fast!

Another recent milestone that took him several months to figure out is climbing in, turning and sitting forward in a chair by himself. This boy works so hard and doesn't give up easily. I love his spirit and perseverance!

Another cause for celebration is putting John Michael down in his crib for a nap or at bedtime while he's still somewhat awake and letting him put himself to sleep, with the help of his Binky. In the morning, he sits up and pushes the button on his little jungle music toy and waits for one us to pick him up.

Another milestone for me has been making so many wonderful new friends, both in person and online. There is an enormous support network for all of us parents who have a child with Down syndrome. It's amazing! Our local Down Syndrome Information Alliance, blogging, Facebook, Ds forums, NDSC Convention, and our local Ds buddies... they've all been ways to connect with moms and dads and to share each others' joys and trials... to give each other support when things aren't going well and to celebrate the milestones, great and small. It's been an amazing learning curve and growth for me personally. I also no longer "worry" about what other people think about John Michael because the positive experiences we've had far outweigh any negative ones. I now enjoy talking with people about John Michael, his abilities and try to help shape peoples' views about Down syndrome in a positive light.

Which brings me to this... John Michael just received his very own afghan, beautifully crocheted by CJ. We've had the pleasure of cuddling with the official T21 Traveling Afghan and have even given an afghan as a gift, but now it's John Michael's turn. This afghan has so much meaning to us and connects us to all the other beautiful children with Down syndrome who have their very own afghans as well. I chose the yarn and colors, and CJ did a beautiful job putting it all together.

Isn't it gorgeous?! John Michael loves it, too!

ArtBeast!

We took the morning off from all chores and therapies and headed to midtown to check out ArtBeast Studio on the recommendations of three friends.

John Michael and Greta had a blast. Within seconds of letting John Michael try his hand at painting (I'm bummed I didn't get a photo), he grabbed the white paint loaded brush from my hand and put it in his mouth. If I didn't have to go wash out his white tongue and lips, I would've snapped a photo. He reminded me of some tribal boy or an old-fashioned black and white film actor.

Abandoning the art room for John Michael until he's a little older, we went out back to the shady courtyard. He quickly decided to (literally) try the sand and rocks. The next photo shows him trying to scrape sand off his tongue.

ArtBeast Studio is a dynamic, super-fun, new hands-on art exploratorium for children 6 and under. It is located in an old wooden house, maybe from the 1920's?, and boasts three stories of activities to encourage creativity, including music, pretend play, puppet theatre, a stage for the "actors", doll house loft and kitchen play area, art and craft tables with clay, paper, collage, paint, etc., upstairs dance studio with tumble mats for infants and a separate room for toddlers & preschoolers, and an outdoor courtyard for more water play to wash babies, scoop sand and gravel, and to bang these old pots and pans as loud as their heart's desire.

John Michael LOVED banging on the huge drum. I'm pretty sure he'll be a drummer some day! The metal structure behind him is made up of aluminum tubing, dryer hoses, large tomato sauce cans and other aluminum objects to make a cool hideout.

Greta loved playing the guitar and performing on the stage. I couldn't believe how much fun it was! We stayed 2 hours, left for lunch at a nearby restaurant, and returned for another round of play for Greta while John Michael napped in my arms.

i did it

Our local blogging friend, Jennifer of Three's a Charm, came up with a brilliant idea. She made up these darling t-shirts that say "i did it" which have become our mantra for everything new John Michael is doing. For each t-shirt purchased, Jennifer will donate the book Gifts 2, to which she's a contributing author, to a local hospital or pediatrician or genetic counselor's office. What a positive way to spread the news that children with Down syndrome are more like typical kids than different. To learn more about the "i did it" project, click here.

Below is our recent list of "i did it's"...


i did it #1: John Michael climbed into my rocking chair using a footstool. He has been working hard on this skill for a long time now and last week, he did it! When he gets in, he carefully turns forward and begins to rock back and forth. The look on his face is too funny.

i did it #2: John Michael (and his family) makes friends. Here's John Michael with our local blogging friend, Jennifer's, "i did it" twin, Joaquin. Through blogging this past year and the NDSC Convention last month, we've met some wonderful families and all because of an extra chromosome, the connections are very deep. I'm amazed at how John Michael and his little friends with Ds seem to bring the best out of all of us. Yes, that's the T21 Traveling Afghan on their laps. :-)

i did it #3: John Michael loves to go to the park and swing. He's starting to go down slides, too. When I ask him to "swing", he rocks the swing back and forth. His receptive language skills are really good.

i did it #4: John Michael can climb into his music therapist's box chair, turn around and sit forward all on his own now. He's been working on that for a long time. Before, he was able to stand up and climb onto the chair, but couldn't figure out how to turn around and sit forward. Last week, he did it!

i did it #5: John Michael can blow into a harmonica and make sounds. This is a difficult skill to learn. He's been vocalizing into a kazoo for a long time (over a year) and recently started blowing air into a recorder. The harmonica takes a lot more forced air to make a sound. Last week, he did it!

i did it #6: John Michael plays well independently. He loves to pull out his xylophone and play either with the attached mallet or with two drumsticks. Last week he started really paying attention to the different sounds the keys make and play different sounds, e.g., striking the red and then the dark blue to hear the contrast in sounds. I'm so proud of this "i did it".

While I could go on about his cognitive and motor skills growth spurt, I think you get the point. John Michael seemed to be at a standstill for a couple months, even retreating backwards in verbalizations while his gross motor skills were in the forefront. I guess that's pretty common. These past 2 weeks, all of a sudden, it seemed like a lightbulb lit up in his brain and he's doing so many wonderful new things. Even some not wonderful things... like climbing up onto a chair and then onto a table and sitting there. OK, it's a wonderful motor skill, but not great for safety purposes.

I have some cute videos to go with the post, but I've been so behind lately that I wanted to share this. Cheers!

T21 Traveling Afghan! + John Michael and Joaquin "did it"

Today was our day to pass on the love of the T21 Traveling Afghan to our local blogging buddies, Jennifer of Three's a Charm and her precious Joaquin.

If you don't know about this project, click the link above. It's an afghan that is traveling the world (literally!) to be shared by families who have a child with Down syndrome. It's like the tie that binds us together -- one family at a time. We are honored to have been a part of this and look forward to hearing the many adventures of the afghan for years to come.

We had the afghan for 10 days and it was very loved in our home. Mostly, John Michael cuddled with the afghan during naps and bedtime, but it also found its way on our living room floor to play hide and seek and offer cuddles while he was teething last week.

I have to say, CJ did a beautiful job crocheting this afghan. It's very cozy and durable, which is great since it has so many more families to touch and be touched by.

There is a journal that travels along with the afghan. It's so cool to read what others have written before us and to recognize some familiar bloggers who share this connection with us. Here's what I wrote. I also attached some photos.

Joaquin is now the lucky recipient of the T21 Traveling Afghan.

Doesn't he look like he's happy to have it?

Finally, we didn't plan this, REALLY, but John Michael and Joaquin are both sporting their "i did it" shirts. I'll post about JM's "i did it" separately, but what a great photo op to get our cute boys together with their shirts AND the T21 Traveling Afghan. LOVE IT!

You can jump on the "i did it" bandwagon over at this post: Three's A Charm. The t-shirts, designed by Jennifer, are $21 (for Trisomy 21) and for each shirt sold, she will donate a copy of the book, Gifts 2, to a local hospital, genetic counselor's office or pediatrician's office. I think pregnancy counseling centers and OB offices would be great, too.

How awesome is that?

Good-byes -- Army relocation

This post is dedicated to my husband's brother, US Army Capt. John Paul Crumley and his wife, Dana, and my darling nephew, Cole.

John served in Iraq for 15 months until one month ago when he finally returned home safely. It was a long and difficult journey for Dana and Cole, but also for John, who missed so many of his son's many "firsts" while he was away. Cole is now 2 1/2.

The family is going to be spending at least until April 2010 at Fort Leonard Wood army base in St. Robert, Missouri for John Paul's captain training program. Church friends of ours who are also an Army family tell us that St. Roberts is a very family-friendly base, so we hope their experience is positive and that Cole transitions into his new home easily.

While John was serving in Iraq, Dana and Cole moved from their previous home in Germany to live close to us and my mother-in-law. It's been very nice getting to know Dana better and watching Cole grow from a 14 month old babbling toddler to a walking/running/bike-riding/swimming/talking active little guy. My Greta will surely miss him the most. At 4 years old, she was like the big sister to him and they became good buddies fast. She also enjoyed bossing him around and he usually followed her lead.

(John Michael taking a dip with his Uncle John Paul)

And for all the military men and women who serve this country, I want to give a big, heartfelt thank you for your sacrifice. I saw firsthand how difficult it can be on families and yet you make the choice to serve selflessly. We'll miss you guys. Love you lots!

John Michael's eye appt & Brushfield Spots

Today was John Michael's 2nd eye exam with his pediatric ophthalmologist, Dr. Satterfield. She also specializes in strabismus, or crossed eyes, which John Michael doesn't have, but if you have questions about it, she has a website. www.satterfieldmd.com

Thankfully, the visit was quick and efficient and John Michael cooperated very well to the different lights and lenses flashed before his eyes.

She noted that he still has a slight astigmatism in one eye, but it is milder than last year. So, although he may need glasses at some point in his life as do many children with Down syndrome, his vision is great and he won't need to visit her for two years. Hurray!

I've always been struck by John Michael's eyes. Last year at our first eye appointment, I learned that John Michael has Brushfield Spots. I'd first heard of them in Jennifer Graf Groneberg's book Road Map to Holland.

From Wikipedia, "Brushfield spots are small white or grayish/brown spots on the periphery of the iris in the human eye due to aggregation of connective tissue, a normal iris element. These spots are normal in children but are also a feature of the chromosomal disorder Down syndrome. They occur in 35-78% of newborn infants with Down syndrome.[1] They are much more likely to occur in Down syndrome children of the Caucasian race than children of Asian heritage.[2] Brushfield spots are named after the physician, Thomas Brushfield, who first described them in his 1924 M.D. thesis.[3]"

I was looking at the sources used to come up with this short definition. Source #3 comes from Hugh R.E. Wallis' The Significance of Brushfield's Spots in the Diagnosis of Mongolism in Infancy, 1951. There's that word... "Mongolism." Man, that bugs me! Every now and then I still hear the word Mongoloid. That's another word that needs to go.

I even read that Dr. Down himself classified our children as "Mongoloid Idiots". If he were still alive, I think the Down syndrome community would have something to say about that! We'd be sending emails, calling and correcting him. If he could just see our children and adults with Down syndrome now, he'd be amazed at how far they've come... and he'd be busy doing a whole bunch of re-writing!

This photo, above, is one of my favorites taken recently at the water spray park that really show off John Michael's Brushfield Spots. There are so many wonderfully unique things about John Michael, but his eyes truly transport me sometimes to another place. A beautiful, peaceful place. I call it heaven.

Guess who has the T21 Traveling Afghan now...

Could it really be the official T21 Traveling Afghan? You bet!

Our little buddy, Sheridan, and his mom, Lisa, brought the official T21 Traveling Afghan to our house last Friday for a playdate. We didn't actually get to keep it over the weekend, but I wanted to include pics. Lisa officially handed over the afghan to us today at the park.

Not actually being able to open a box that came in the mail, John Michael, upon seeing the blanket for the first time, put his head right down on it and cuddled up with it...

then paused to examine it a bit closer. I'm guessing he really likes the muted color scheme and the stitches :-)

Knowing that this afghan has already traveled to many states and has been loved by many of our blogging friends and their chromosomally enhanced children is a wonderful feeling. And knowing that this very same afghan will be loved by more children in the rest of the states and other countries as well is amazing. A lasting connection being made, like a spider building her web one strand at a time.

John Michael is going to have some great cuddles with this afghan as we patiently wait for CJ to finish our own afghan.



Today at the park we officially received the afghan to take home for a week! I hope you don't miss it too much, Sheridan! I'll post some more photos when John Michael is alone with the blanket. :-)

John Michael also made a new friend today. Jase is 10 months old and son to another Lisa. I met Lisa at the mom's sharing session at the NDSC Conference last weekend. Her little guy is such a cutie! John Michael, at the ripe age of almost 21 months, is going to teach him all kinds of new stuff!

Even Jase got to hang out with the afghan for a little while in the park today :-)

John Michael can Boogie!

Older siblings are great for teaching the younger ones how to do fun things.

Two days ago, Anna taught John Michael how to dance and move to music. He's even starting to sway to electronic music books on his own. Very cute!

I hope this puts a smile on your face. It sure does mine!

NDSC Final Day

4 little cutie pies on the final day... Joey (sorry, I cut you off!), Brennan in the back, Joaquin and John Michael.

John Michael kept bolting... it's like he's saying "No more pictures, I have other things to do..."



Cori holding Joey, Me holding John Michael, Sharon holding Brennan, and Jennifer holding Joaquin.

Nicolas (2nd from left) had an excellent time at the Brothers/Sisters segment of the NDSC Convention.

Even though we all live in other parts of the country, these are friendships that will last a lifetime because of a common bond. It's awesome to see these young people chatting with older teens and young adults who have Down syndrome. At the dinner, Greta danced with a boy who has Ds and Anna had a nice conversation with a self-advocate and his fiancee sitting at our dinner table. Awesome!

Next year we're in Orlando (think positive!) Well, at least I'm hoping to make it!

NDSC Convention Update

All talk and no play is no fun...

John Michael taking a break in the play area.

John Michael with Brad Hennefer (Golf for Life). Brad's an accomplished athlete and helps teach golf to kids with Down syndrome. If we lived closer, Brad, we'd definitely sign up!

Me with Kathryn Lynard Soper. She's soooo nice in person -- don't let her Teletubby persona fool you :-) We had a nice chat after the birth to 2 year old sharing session for moms. I also enjoyed sitting in on Kathryn's talk today on Sharing your Gifts.

Today we had lunch with about 11 other DS Bloggers and their families! That was excellent! But, wouldn't you know it, I didn't get a photo. Jennifer from Three's a Charm took a photo, so hopefully she'll post that.

It's been amazing to see all these faces with Down syndrome and the people who love them. Nicolas is participating in the sibling workshop and made friends within the first minute of walking in the room on Friday. These guys are so great -- they all range from 11 to 12, 6th to 7th grade. I so wish they all lived here so Nic would have them as regular friends. What a difference that would make to have a friend who shares something unique in life. It's awesome that his friends just come up to John Michael to give high fives, shake hands, to hold him or hug him or tell me he's awesome. (I know I've overused the word "awesome" but that's how it feels.) Some adults with Ds or older children w/ Ds have come up to John Michael and said hello. JM's face lights up, as does theirs, and I sense a deeper connection than what I can comprehend. Ben and Alex's mom from Colorado told me that Alex (Ds), who's only 7, can tell who has Ds and who doesn't. She said she's never actually told him what features to look for, but she thinks he senses something as well. Interesting...

Anna chatted with an adult w/ Ds at dinner and Greta danced with a 7 year old boy with Ds. The girls are having a fun time, too, although they spent most of the day at a nearby friend's house. I'm so proud of my girls!

Tomorrow is the final day. It will be bittersweet, as is the end of anything great. I've made some great new friends and look forward to keeping in touch and watching our children grow via blogs and Facebook.

On a final note, but definitely not last on my mind, Gabby did well in her heart surgery in San Francisco. Thank you for your thoughts and prayers for the family! I know it means a lot to them!

Word(y)less Wednesday + 1st Bloggiversary

John Michael hears an airplane...
Feeding Mitzi his freeze-dried apples

My glimpse into Heaven...

Well, I missed my 1st Bloggiversary. I began blogging on July 10, 2008, not sure what to say or whether anyone, ever, would read what I had to say, let alone want to leave a comment.

A year later, I have 43 public blog followers, many of whom I would easily count as my friends, although I've never met them personally. Blogging has been very good for me mentally. It would be impossible to gain all the wisdom and support from all these different bloggers around the world without the internet and the bond of the Ds community.

Thank you for reading, commenting, and allowing me to share a part of our world with you as well as sharing your world with me.

Below are two old posts from a year ago that perhaps no one ever read, but still move me to tears when I see them.

Please enjoy these, a moving video and a short photo story book from our local Down Syndrome Information Alliance of Sacramento.


Did you know that 90% of prenatal diagnoses of Down syndrome end in termination? That number is even higher in some European countries. It really is true that people with Down syndrome are more like us than different. Learn more about what's possible for the future of people with Down syndrome by watching the new inspirational film, Dreams in Reality, produced by the Down Syndrome Information Alliance of Sacramento, California.

Whispers of Hope, produced by the Down Syndrome Information Alliance of Sacramento, California, is a beautiful compilation of photos and stories about real families who have a child or grandchild with Down syndrome and their message of hope for a positive future. Click on the link to download this pdf file.

Visit with our buddies and NDSC Meet-Up

I have a lot on my mind this week. Therapists, playdates, school newsletter editing, life with four kids...

BUT...

the NDSC Convention begins Thursday evening this week and I'm so excited to finally meet some fellow Ds bloggers, hear great speakers, meet a favorite author, and get some new insight into this brave new world we entered some 20 months ago.

But more importantly, let me take a moment to ask you to please pray for our beautiful little local friend, Gabby. She is such a sweetie and she's having her heart repaired this Friday so she won't be able to be at the Convention. We're going to miss her beautiful smile and her mom, Sheree's, sunny personality. We also pray for the doctors and for her whole family. {{HUGS to you, Gabby!}}

Last Friday, we met our local Ds blogging buddies at a spray park. All the kids had a blast. You can see John Michael and Anna took full advantage of the fun. Greta's in the background on her scooter and Nic is somewhere getting soaked.

Below, John Michael is checking out Joaquin's camp hat. Joaquin didn't mind his hat being on his head one bit, which is more than I can say for my little guy who constantly removes any hat I put on his head. And apparently hats on other heads as well.

Here, Gabby and John Michael are sharing a little kiss. I think he's wishing her well for her upcoming surgery and recovery.
All in all, it was a super-fun afternoon catching up with our friends. Anna was great with John Michael.

Below... The Fab Four! From left to right... Sheridan, Gabby, Joaquin, and John Michael

Love those eyes!

On a final note... If you're heading out West to Sacramento for the Convention, we'd love to meet you. Please say hello! We'll be wearing our nifty DS Bloggers ID badge and so will about 10 others. You're welcome to join us for lunch on Saturday, but please leave a comment if you're planning to come. Meet us at the Registration Table at 12pm and we'll walk to a local restaurant. Hope to see you there!

PS: If you think you'd like to join us, comment here or on DS Bloggers so we know how many to expect. Thanks! and Happy Traveling!

FYI: Sacramento is very hot this time of year. Think upper 90's to low 100's for daytime and cool evening breezes in the 60's and 70's.

Garden Art Girls

Anna and Greta love to create. Painting rocks for garden art is something we've always done. It's fun, colorful and lasts for many years, especially if you seal it with a clear coat. Sometimes, we choose larger smooth river rocks from the nature trail behind our house to make paper weights, door stoppers and teacher gifts. Today, they felt like making flowers, butterflies, trees and dragonflies.

The creative process.

Arranging the petals into a beautiful flower.

Wordless Wednesday -- Time for a Haircut

John Michael needed a haircut.

I'd done a horrible job on his bangs and the hair was tickling his ears, so I brought him in last week for a trim. I asked his stylist to keep the layers a little longer than usual in the back.

I couldn't get a shot of the actual cut since I was holding onto his legs while he was sitting up on a riser in a barber chair. Afterwards, he got to play with old fashioned toys while Greta got her hair cut as well.

*** For the record, he does not like getting his haircut, but the stylist is fast and efficient and also has lots of toys for him to throw/play with, so that helped.

Awesome Brother!

HAPPY 12th BIRTHDAY, NICOLAS!

You always wanted a little brother. When John Michael came along 20 months ago, you weren't sure he was the brother you were hoping for. Time and love have shown us that he is exactly the brother you were meant to have. You have such a special bond with him and it's amazing how much you two look alike at the same age. The top right photo of John Michael climbing on you and the photo below of you in your Bavarian sweater are amazingly similar. Same smile!

I hope John Michael learns a lot from you -- you're a great role model to him. You have an adventurous spirit, you're a strong Catholic, not afraid to stand up for your faith, fun and loving brother (most of the time), awesome son, smart, funny, brave, courteous, cheerful (OK, what's the Boy Scout oath again?) and all around likeable kid. We love you!

John Michael at 20 months old + IFSP meeting

John Michael is 20 months old today. Here's a 14 second clip of him crawling through a pop-up nylon tube at his Oma's house tonight. He's super fast and it was cute how he chuckled when he came out. Too bad he wasn't looking at the camera when he was laughing.

Earlier today we also had our 6 month review with his service coordinator and therapists. Our last visit was in January and John Michael has changed so much since then!

Six months ago, one of our goals was for John Michael to bear weight on his feet/legs to standing and possibly walking. He's cruising all over the place now and, while he's not letting go on his own yet, is getting faster and stronger all the time.

Another goal was for him to say or sign 25 words. He says or makes sounds for about 7 words and signs about 10 words. He also points to body parts and pictures in books. Pointing is certainly a form of signing. His receptive language is impressive to me. When I ask him where something is, he usually points to it, and when I ask a simple command, he will give me the object or do what I ask....... with the exception of the word, "no." He usually goes deaf when I tell him, "No, don't pull out the computer cord" and "No, don't play with the doggy's water bowl" or "No, don't feed the doggy your lunch" or "No, don't climb into the shower stall and play with the drain." I could go on and on, but I'm sure you get the point!

Another goal was for him to use a fork and spoon. I'm guilty of not giving him a spoon to practice this skill. I usually give him finger-foods or I spoon-feed him myself. I'm going to let him try "sticky" foods, like pudding and oatmeal, even if it means we'll be wearing it. He does use the fork and can skewer little chunks of hot dog or meat on occasion. I'm amazed at how patient he is and keeps trying. If I load up his fork and hand it to him, he puts it in his mouth each time, no problem.

One last goal to mention is playing with toys purposefully and using crayons or a pencil. He's doing a much better job with this. He stacks and nests toys. I'm teaching him how to stack Duplo legos on top of each other. We're also working on a simple wooden puzzle, shape sorter, and holding a pencil or paintbrush (loaded with water!) Last week he crawled up the small slide in our backyard, turned around and went down feet forward. That was awesome! But, right after that, he went up again, turned around and went down face first. Not so fun. He didn't get hurt, but we can't trust him to go down correctly on his own yet.

Our goals for the next 6 months will be for him to walk. I think that's a realistic goal. We will also work more on language and communication. I'm increasing speech from once per month to twice per month. If Music Therapy ends up on the chopping block, we'll increase time with his OT and special ed teacher to make up the difference.

I took this photo last week. It was the first time EVER that he has sat still for about 10 minutes to watch a television show. I guess Muno on Yo Gabba Gabba! was exciting to him. :-) He usually stands in front of the TV and tries to push the buttons. It drives Greta crazy, but she's pretty tolerant of him. All in all, things are going well. I'm enjoying this stage -- he's so fun to be with and his siblings love playing with him, too.

More John Michael firsts (Golden Arches)... and "Roses"

OK, this isn't exactly something I'm proud of, but I guess it's a big milestone in typical American households.


John Michael ate his first order of Chicken McNuggets and french fries.



This isn't his first time eating french fries -- he actually likes this vegetable (wink). And he likes cheeseburgers. But I've tried chicken nuggets before and he just tossed them on the floor. Yesterday, I was super busy shuffling my older kids to and from art camp and fire camp and I caved, I mean, went through the McD drive-thru. He ate 3 out 4. I guess you could say he liked them!




Another first... I taught him how to dip his fries into ketchup. I think more ended up on the side of his chunky fist than on the fries, but he liked the process and the taste was a bonus.


Finally, I want to say... what's up with the toys in Happy Meals? I mean, this toy literally does nothing, except that the acorn in its pouch goes up and down. The look on John Michael's face should tell you how exciting this is. This was actually Greta's toy, but she passed it on to her little brother. When Nic and Anna were little, we used to say, "No, thank you," to fast food toys. The cashiers usually looked at us as though we were denying our children. Sometimes the kids would look for other kids in the restaurant and give them their unopened toys. Seeing this toy yesterday reminded me that that's not a bad thing to go back to.



If you're interested, I posted a photo that I edited with a new tool in my toolbox.

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Lesson 4 of JessicaSprague.com's "Photo Editing: Frame-ups and Special Effects" class taught us how to use clipping masks.

I used a photo of roses from my garden and applied a grunge clipping mask to it. The photo conforms to the clipping mask, giving it a grungy, worn look. I think I'll use this again and again.

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Lesson 3 -- Vintage Looks

Day 3 of my photo editing class was a lesson on creating a vintage look.

This photo I took of the girls in their 1950's diner dresses was perfect for this project.

I tinted Greta's hair, ruffle and cheeks and colorized Anna's hair, cheeks and logo on her dress. With Photoshop 7, I used about 7 different layers and changed the hue/saturation levels to achieve this vintage look.

Wordless Wednesday -- LEGOs

When John Michael was born, Nicolas was really sad for a while because having a brother Down syndrome meant (to him at the time) that he wouldn't have anyone to play LEGOs with or play ball.

John Michael continually proves to us that he is all boy first and Down syndrome is just a small part of who he is.

Here, brothers are playing LEGOs together, even though the pieces are too small for JM to put together. He's at the Mega Blocks stage for stacking, but took some time out of his busy toddler schedule to play with his big brother.

* Yes, I realize the pieces are super small and can be put in his mouth, but I was monitoring very carefully :-)

Curiosity -- Lesson 2 on Brushes

I can't get this photo out of my head. I love the intent look of curiosity on John Michael's face.

In Lesson 2 (at www.jessicasprague.com), I learned how to use brushes (like stamps) in Photoshop and to easily change colors to match those found in my photo using the eyedropper tool. The frame and word art are colors taken from the wings of the butterfly.

Rather than cropping out the docent's hand, I decided to use a frame brush to accentuate and draw the eye in to my (adorable) subject. (Of course I'm biased!) Check out the gallery at jessicasprague.com for more inspiration.

Mt. Shasta Memories -- July 4th, 2009

John Michael and Daddy hanging out at Lake Siskiyou (Mt. Shasta, CA)with majestic Mount Shasta towering in the background.

Nicolas plowing the back acre with Opa's tractor.

Playing a little Frisbee with Anna...

Greta at the Mt. Shasta 2 mile Fun Walk

Nicolas, my super trooper, carried John Michael the whole way on his back because Daddy and Anna left with the car before we could get the stroller out!

Doug and Anna ran the 5 mile and 2 mile races. John Michael is hiding in the backpack. It was a hot, but beautiful day!

Gorgeous sky above Mount Shasta, a 14,162 ft volcano.

My patriotic bunch!

John Michael reaching for a blue butterfly that is just being released at Turtle Bay in Redding, CA.

(* No butterflies were harmed in the shooting of this photo)

An Erato butterfly. I've never seen something so beautiful! We followed it to see where it would land. What a beautiful rose it chose for a great photo.

The Art of the Brick was the title of this show. Very cool!

Here John Michael is stacking Mega Blocks, something he's never played with before. He continually shows me that kids with Down syndrome should be given the same opportunities as any kid!

An actual T-Rex named "Sue" from North America. No flash was allowed, hence the low light. This was quite amazing to see in person. * They don't really know if it was a female, but that's the name they gave it.

As you can see, we had a fantastic July 4th weekend.

I hope yours was, too.

God Bless America!

(Nearly) Wordless Wednesday -- John Michael the Artist!

Emptying my cabinets is a favorite pasttime for John Michael. Here, he discovered how fun it would be to play pick-up sticks with my paint brushes, scattering them across the floor.

Hmmm, tasty. Or maybe he's working on his next masterpiece.

We made a game of putting the brushes "in" the can. He caught on and thought it was fun...

only to scatter them once again.

Brotherly love and Boy Scout camp

Nicolas made it home safely from a week away at Boy Scout camp. He's such a vibrant part of this family and we've all missed him very much, including Anna who has had to be the big sister all week and take on some of Nic's chores.

While at camp, Nic earned 4 merit badges -- Music, Wilderness Survival, Leatherworking, First Aid and he partially completed Environmental Science. Wow! For Wilderness, Nic and another scout had to spend a night outdoors and could only bring 3 things with them. He brought a towel, plastic bag and a flashlight. They made their own shelter from pine needles, wood and branches. He said he only slept for 30 minutes the whole night! For Music, he had to compose 12 measures of a song, sing God Bless America with proper posture and voice, name the 5 instrument groups and attend two live music performances (he used my vocal jazz concert and a music in the park we attended with our family recently). I love the short piece he composed for piano. There are some cool jazz chords in there.

All week, John Michael has been pointing to Nic's picture around the house and saying "K". It is so sweet to see them together again. He gave Nic big hugs and kisses and smiles.

While at camp, Nic said he saw a boy from another troop who had Down syndrome. He said he was about 12 or 13 years old. He didn't have a chance to talk to him, but I got choked up thinking about John Michael being a Boy Scout in the future. He'll be the best Scout ever. The BSA has a special allowance for people with different abilities. Where typical kids age out of Boy Scouts at age 18, there is no age limit for those who have developmental disabilities. Recently, I saw a video of a young man (age 40!) with Down syndrome who earned his Eagle Scout rank. That is so hard to do for any young man, so I was doubly impressed when I saw that (not to mention I was crying by the end of the video)!



Have a great weekend! Mine's already getting better :-)

Almost Wordless Wednesday -- First trip to the zoo

Click to enlarge

Doug and I took the kids to the Sacramento Zoo on Father's Day (Nicolas is at Boy Scout camp all week). It was John Michael's first time at the "big" zoo.

The top right photo is funny -- John Michael is pointing to a lizard with his chubby middle finger. It was also his first carousel ride. We had a great day -- such a fun way to celebrate the Best Daddy in the World.

That night, John Michael had another first. He pooped in the bathtub (photo not included LOL)! I'm so not good with floating poop, so "Best Daddy in the World" took care of it and washed all the toys while I took JM in the shower to get clean.

Book and Toy Recommendation

I love it when we find toys that do more than just entertain, make noise, and eventually collect dust. Here are a couple that recently caught my eye and have been a hit with John Michael.

We bought the Fisher Price Laugh and Learn Mailbox at Target after John Michael first saw it at Gabby's birthday party. It has so many great learning features such as putting the 3 letters in the thin slot, opening and closing the mailbox to put the package in, a snail shell for turning and a jingly spinning thing to manipulate little fingers. It has a music setting and learning setting as well. After a while I get annoyed by the little bird that makes noise every time you touch it, but you could also turn off the sound.

Another great find is the Slide and Find Words book. We bought this at Barnes & Noble off the shelf. On each page, children learn their colors, match pictures on opposite pages of different sizes, and the best part is the sliding door that reveals a related picture; e.g., a banana on the outside and a sliced banana behind the window. Each sliding window (4 per page) opens in a different direction (up, down, left and right) so there's lots of fine motor work on that as well. John Michael is working on that as well as pointing with his index finger (vs. his middle finger) 50% of the time.

We also really like these blocks. They are Parents brand from Target. The blocks are bigger than traditional wooden blocks and are rubbery in texture. They can be squeezed to make a sound, have numbers and pictures all around, come in different colors, have a "lip" or raised edge for easy grabbing and the texture makes it easier to stack on top of each other as well as balance on carpet.

Finally, there's no better playmate for John Michael than Daddy and his siblings. Sorry, Target doesn't carry these particular models anymore. ;-)

Sharing the Love...

It's gonna be another hot day here.

In a little while, we're going to buy a plastic pool for splashing. Here are some photos to make you smile.

Greta and John Michael sharing the love...

and kisses...

and the best hugs...

John Michael is showing off his new International Down Syndrome Coalition (IDSC) for Life onesie. Check it out if you have a chance.

Have a great weekend!

Honest Scrap Award!

Thank you to Edel (aka Squelly) of The Dreamer's Day in London for presenting me with the Honest Scrap Award. I am honored to have been chosen. How wonderful to communicate with people across the world with a few clicks on the keyboard!

In accepting this award, I need to do the following: 1) Say thanks and give a link to the presenter of the award. 2) Share "ten honest things" about myself. 3) Present this award to 7 others whose blogs I find brilliant in content and/or design, or those who have encouraged me. 4) Tell those 7 people that they've been awarded HONEST SCRAP and inform them of these guidelines in receiving it.

Ten things about myself:

1. Sometimes I am reserved and have difficulty making "small talk" in social settings, until I get to know you better. Then you can't stop me! I have found my voice through writing/blogging.

2. My first instrument was the accordion. I took lessons for 3 years, but secretly wished I could've played piano instead.

3. I love being in nature with my family but am not keen on camping.

4. I am very unfocused and easily distracted throughout the day. Also, Need More Sleep! (or is it 4 kids?!)

5. I was at the top of my class in high school (grade-wise, not socially), but struggled once I got to college. It took 7 years to finally settle on a BS in Applied Mathematics & Statistics. I sang throughout high school and college and would've loved to have a vocal performance degree.

6. I love blogging and meeting other moms through blogging who have a child with Down syndrome.

7. I am a terrible procrastinator, but can really get my brain in gear when the pressure's on.

8. My name, Monica, dates back to 4th century northern Africa or Phoenicia. St. Monica is the patron saint of mothers. She prayed for her son (St. Augustine) for many years who eventually converted to Christianity. My name also means "advisor", which fits since I like to help people and share what I've learned.

9. I was born on the Feast of St. Francis -- October 4th. Maybe that's why I love nature.

10. I would love to take classes in HTML, writing, and art to see where they might lead. I love doing graphic art on the computer, too. Sometimes I think about getting a teaching credential for math, but that desire usually fades away.

Now for the hardest part -- coming up with only 7 blogs that I love.

In no particular order:

Jennifer @ Three's A Charm
Lisa @ Genetically Enhanced
Sheree @ The Phamily Blog
Sharon @ Brennan's Beginnings
Ria @ Bill and Ria - Sharing experiences about life, parenting, and Down syndrome
Beverly @ Adventures of Home Schooling Noah
Debbie @ Three Weddings
Maggie @ Take a Walk on the Happy Side

and for a new blogger --

DS Mama @ Down Syndrome New Mama

OK, so who's counting anyway? I could easily add 10 more!

Will ya get me outta here?!?!?

This was too funny. Greta climbed into John Michael's crib after he woke up from his nap. They were trying to kiss me through the slats -- nice, big, fat, juicy, wet kisses (top right photo). BTW, John Michael's shirt says "Miso Cute" -- a hand-me-down from his cousin, Cole. I agree!

Visit with the geneticist at the MIND Institute

John Michael enjoyed his time at the UC Davis MIND Institute this morning while waiting to see his geneticist.

Stacking is a big thing these days. I loved these huge Lego-style plastic blocks. So fun!

Ahhh, our favorite tank engine... Thomas!

Trains, trains, and more trains.

The UC Davis MIND Institute is an amazing place. Architecturally, it's a beautiful building of brick with the inside filled with glass and light beechwood. Artwork from patients with autism spectrum disorder line the walls, all professionally framed. Some pieces are so incredible, they look like master artists painted them and should be found in galleries. The waiting room for children is also very impressive. This place is primarily for children with neurological disorders, such as autism spectrum disorder and fragile X syndrome. However, John Michael's geneticist that he saw a year ago, also has an office here.

Doug and I with John Michael, along with Dr. M and two interns, crowded into the small room. Dr. M was immediately impressed by John Michael, having last seen him when he was four months old. At that time, we had many worries, concerns, and questions over what health issues may arise during his first year. As we all sat down, John Michael smiled, waved and reached to shake hands with her and the interns who were there to observe. He is very social and loves to interact with people. The purpose of the visit was to follow-up from a year ago and to see his development. It was also my one chance to ask an expert's opinion face-to-face about some treatments other parents are doing with their children, such as high doses of vitamins or taking them to the Institutes in Philadelphia, PA.

On high doses of vitamins, she said that there haven't been any conclusive tests to suggest that it is beneficial, but she has some parents that say they've noticed marked improvement with cognitive function and muscle tone. Other parents have said it hadn't had any effect. She said water-soluble vitamins were harmless in high doses, but to be careful for fat-soluble vits that could build up and cause liver damage. I asked her specifically about Nutrivene and she said a colleague of her said it's a balanced vitamin product and could be used.

As for the Institutes, she has heard of it and said it was highly regarded for children who are brain-injured. Down syndrome is a type of brain injury, according to Dr. Dolan of the Institutes and the children are given therapies based on that. Dr. M said that parents who've taken their children there are very happy with the intense therapies and use of oxygen for cell regeneration (I hope I said that correctly).

Even for parents who cannot or would not do the Nutrivene or Institiutes programs, Dr. M highly recommended daily multiple vitamins, such as Poly-vi-sol, for children with Ds. I can't recall specifically the medical reason, but something like their bodies don't absorb nutrients from food as easily. But don't quote me on that!

So, I will do my best to remember to give John Michael his vitamins... because it's good for his cells.

She noted that his height (50th percentile) and weight (75th percentile) are excellent and his head circumferance (3rd percentile) is typical for children with Down syndrome as their heads and brain size are smaller than the general population.

Finally, I asked Dr. M about Mosaic Down syndrome. It's been a question in my head for a long time.
She said that at first glance, she suspected Mosaicism due to his mild facial features. He could have a simple skin biopsy to find out. In the hospital, just after birth, they tested only about 20 cells. With skin cells, it takes about 2 months to grow and test about 100 cells to see if all or only some have the 3rd copy of the 21st chromosome. Of course, if he does have the Mosaic form, she did tell us that nothing technically changes in how we care for him as it is still Down syndrome. It just gives us more information about him. I'm not sure when that'll happen.

We don't need to follow-up with her since John Michael's needs will be taken care of by his pediatrician. But it sure was good to just have an expert take a look and say, "You're doing a great job... John Michael is doing fantastic." Sometimes we just need an extra pat to affirm all the hard work we do. And that was well worth the copay!

Snacktime! and a Turning Point for me

John Michael is almost 19 months old. He's drinking more from a sippy cup these days -- milk and OJ and sometimes diluted apple juice. He can use a straw very well, too, but these lightweight disposable cups are easier for him to maneuver. Psst, don't tell him it's an older girly princess cup of Greta's. He hasn't noticed yet. BUT! Yesterday, I gave him milk in a Dora the Explorer cup and I asked, "Where's Dora?" With his middle finger, he pointed to Dora and said Dih Dih. Another word! Yay! Now we have Dada, Bap for bath or water, Eh Duh for Greta, "K" for big brother Nic and Cat, and Dih Dih for Dora.

Check this out! He can reach and put his sippy cup in the cup holder of his high chair tray. We're beginning to work on simple puzzles now.

He loves snacking on graham crackers or baby Gold Fish crackers and orange juice. His pincer grasp is getting better. He used to pick up food with 3 or more fingers and shove it in. He's working on using his index finger more, although he still points with his middle finger more often than not.

It looks like he has a headache, but he's actually playing peek-a-boo and trying to hide his eyes from me. It's so funny, I can never keep a straight face! John Michael also will shake everyone's hand and give high-five's. He's very social and loves to get peoples' attention by forcing eye contact.

So here's my "Turning Point." I brought Anna to the racquet club this morning for summer tennis camp. BJM (before John Michael) I used to play tennis at least once a week, on a team or just fun doubles matches. Somehow as he's grown and his delays are more obvious, I haven't had the courage to put him in the play care room at the club so I could play tennis or exercise. As a result... well, I'm not physical enough.

On our way out, I decided to pop in the play care room and ask the woman there if there were slower times and whether they would take JM. It turns out that every morning from 9:30 to 11, the 4-6 year olds go outside to play on the basketball courts so the room would be quieter with kids more his size.

I went through the diagnosis, explained he's healthy as a bear -- just delayed in some areas. I was choked up and on the verge of tears the entire time I was talking with her. She watched him crawl over to the shelf, pull out some big plastic dump trucks and start pushing them around. She asked a few questions about whether he could eat Gold Fish (yes) and drink from a sippy cup (yes) and whether he was OK with strangers (not always, but a Binky will help). She remembered Greta from the past and asked if she would be joining him (yes!). After watching him play contentedly for a few minutes, she said he'd do fine in there and that it would be good for me and him. Before we left, she knelt down, looked John Michael in the eyes, and spoke directly to him and welcomed him to come anytime. I smiled, thanked her and said, "I promise!"

I left there with a load lifted off my shoulders. I'm still emotional typing this. It's been 2 years since I've played tennis. It's the only sport I thoroughly enjoy and I miss the physical and social aspect of it. Last year Nic and Anna got to play while I stayed home with a baby. Now it's my turn. I think this might be a great summer.

Met another new blogging friend...

Saturday was one of those super-busy, every minute of the day is planned, fun days where I really didn't lift a finger beyond vacuuming the living room and entry. We started with Greta's Trik-a-thon at preschool. She rode 15 laps around her school on her trike and raised some money for her school in pledges.

Anna joined us. The girls had fun "hanging" after lunch.

Anna adores John Michael. Seriously!

She and Greta can't get enough of him and

Greta gets jealous when Anna "takes over".

Below: Saturday afternoon, some local blogging moms met up with Chrystal and Malea of "One More, More than One" who were visiting Sheree and Gabby for the weekend.

L to R: Sheridan, Gabby, Malea, and John Michael

And us moms... Chrystal and Malea, Monica (me) and John Michael, Sheree and Gabby, and Lisa and Sheridan.

We're all going to the Convention. How 'bout you?

Come visit us at DS Bloggers so we can meet you at the Convention, too. You can also check out my previous post for more information.

"DS Blogger" ID Tags for bloggers going to the NDSC Convention

If you're someone who blogs about Down syndrome and you're headed to Sacramento this summer for the National Down Syndrome Congress convention, here's a fun way we can identify each other.

Check out our new blog, DS Bloggers.

If you send me your name, blog name and URL, we'll add you to our list and create a custom DS Blogger ID badge to wear to the Convention.

This will be an easy way to visually identify other Ds bloggers who we may not recognize in person. What a great way to strike up a conversation and forge new friendships!

Please share this link with your blogging friends, post to your own blog, add it to your Facebook, and grab a button.

We're also working on finding a time to meet. More on that in the coming weeks.

My team members are: Jennifer Varanini Sanchez of Three's a Charm, Sheree Pham of The Phamily Blog, and Lisa Lindsey of Genetically Enhanced. Come check it out and register your blog.

Life's More Fun with Friends and NDSC meetup

John Michael enjoyed having two of his friends come over to play yesterday. Gabby came with her mom, Sheree, and Sheridan came with his mom, Lisa. It was so fun to see them interact together. Sheridan was showing off his new sitting up moves. Gabby was the charmer of the group, smiling and clapping and occasionally knocking John Michael over. He didn't seem to mind, though. John Michael stood at the piano and played a couple notes for his friends. I just love seeing him with his buddies! Melts my heart.

On a separate note... we were discussing how to identify fellow Ds bloggers at the NDSC Convention this summer. If you have ideas from previous conventions, please share. I'll soon be making a separate blog for listing names and blogs of people who would like to meet or be identified somehow at the Convention. I was just thinking how cool it would be to have a special name tag or ribbon to identify us bloggers so we might strike up a conversation. Ideas welcome!

John Michael's cruisin' in the kitchen...

Take a look at what goes on when I'm out of the room!

I just happened to walk back to the kitchen to find John Michael pushing a barstool and walking behind it! He'd already moved it from the other side of the island by the time I saw him! Lucky for me, the camera was close by and had ample battery power.

So awesome!

Respite -- a welcome break!

John Michael loves his "bap" (as he calls it).

What a ham!

I guess he thinks the red bowl is a top hat like the one Nic wore as the Artful Dodger in Oliver! LOL

At our last IFSP meeting, our regional center offered us 48 hours of respite services per quarter. That equals about 16 hours per month or 4 hours per week. My mind quickly turned to thoughts of "me time" and playing tennis and shopping and running errands kid-free. Mostly, I've used the time for dates with my husband, Doug.

The toughest part was trusting someone to watch my little guy. The first woman I interviewed was nice, mid-50's, but smelled heavily like cigarette smoke. If someone smokes, it's their business, but I don't want my child to smell like smoke when he cuddles with someone. The second woman I interviewed over the phone. Each time I called her, she sounded like she was asleep... in the middle of the day. And had no phone etiquette. OK, next!

Third time's a charm. On our third try, I asked her straight up if she smoked and about her experience. She's worked for respite 5 years and has an adult cousin who has Down syndrome. She takes him bowling and hangs out with him. She's pretty young, early 20's, doesn't smoke. Doug and I tested her out with a 2 hour dinner and art show date. All 4 kids really liked her and Anna said, "Mom, you can't judge a book by its cover," referring to her current make up and fashion style. We've used her several times now and I feel comfortable with her. Most importantly, she takes John Michael for walks and they ate lunch in the backyard and she really focuses on him.

Yesterday, we had another woman come over since #3 was spending the weekend with her cousin who has Ds. I'd interviewed #4 over the phone and she sounded great. She's 35, works in the medical field as her day job, and loves kids. We totally hit it off and she fell in love with John Michael (her words) within minutes. Of course, he sealed the deal when he layed in her arms and fell asleep while we were finishing up details.

So now we have two respite workers that we like and it's such a relief knowing our kids are happy and well-cared for while we're away, taking that much-needed break. Ahhhhhh, thank you to our Regional Center and UCP for your services!

Oliver!

Nic as the Artful Dodger, Anna as a street urchin and orphan, and Greta as a rich girl.

Last week, we lived our days and nights for the Oliver! musical. The kids had full dress rehearsals from 5 to 9:30pm 3 days in a row and then 3 performances back to back. They performed the full Broadway version, which for an elementary school, is a tall order.

The kids were excellent! Nic had several solos and some dance moves. Anna sang and danced with the other orphans and Greta came on stage for the Who Will Buy? scene. I was so proud of her getting up in front of an audience 3 times and singing with the cast.

On the final evening of the performance, Greta was brave enough to go up with Nic to take a bow.

Never far behind, John Michael was hoping to get in on the action, too.

Memorial Day in Old Sacramento

If you're headed to the National Down Syndrome Congress Convention this July, you'll want to come check out Old Sacramento.

Established in 1849, Old Sac is bustling with shopping, dining, entertainment, historical attractions and world-renowned museums set within the time of the California Gold Rush and the Transcontinental Railroad.

Over Memorial Day weekend, Old Sac hosted the 36th Annual Sacramento Jazz Festival and Jubilee! It featured more than 60 bands at 23 venues, playing jazz music of all types, including sixteen bands made up of teenage musicians on their own stages.

We had a blast listening in on all the free family jazz venues.

My sweet John Michael.

Definitely all boy first...

Down syndrome is way down on the list of things to describe him...

Riding in an open car pulled by an old 1860's steam engine in Old Sacramento. A jazz banjo band entertained us for the 45 minute ride up and down the Sacramento River.

These brothers have a special bond.

John Michael makes a hard "K" sound for Nick!

I just love love love this little guy's smile. Thanks to Anna for helping me get this great shot. She is the best at getting him to smile for the camera. His eyes are sparkling in this photo!

We took a coffee and ice cream break aboard the Delta King Paddle Boat. Just over the rail we could see and hear below an excellent teenage jazz ensemble play old jazz standards. On the front side of the boat, we saw a huge family of Canadian geese and goslings swimming upstream and one lone turtle sunning himself on a rock jutting out of the river.

Me and my girls, Anna and Greta.

And a very special thank you to the men and women who have served and are serving our country. Freedom comes at a great price and we are grateful for all you do. A special thank you to those who gave their lives so that we might have ours.

PS: Drop me a note if you're coming to the Convention and would like to meet. I'd love to meet some of my blogging friends in person!

Hangin' with his friends at Gabby's 1st Bday Party

John Michael and Joaquin busy playing with Gabby's new mailbox toy.

John Michael is sharing some mail with Joaquin.

The "ball" babies...

Oooh, our special gift to Gabby. Her own T21 Afghan.

I ordered the afghan from Miss E's mom, Chandos, and gave her the color scheme I was thinking -- light pink, dark pink and green. I had no idea it would be a perfect match to Gabby's bedding. How cool is that?!?! Miss Gabby loves her soft blanket and I'm so thankful to Chandos for her talent and eye for color.

It was a perfect afternoon of fun and friends (although the 100 degree temp outside was a slight bother). Us moms, including Lisa with Sheridan, hung out chatting and noshing while our little ones played together inside and the older ones played outside in the pool. Fun fun!

John Michael's 18 month check up

John Michael turned 18 months old yesterday, May 14th.

Today was his 18 month check up. Hurray, my little guy is (finally) growing again. Between 12 and 15 months, he'd had a weight loss and hadn't grown in length. The pediatrician wasn't too concerned since JM had just started crawling and was no longer nursing, which resulted in a slight weight loss.

John Michael weighs 27 lbs 9 oz and is around 50th percentile on the typical kid charts for height and weight. His head circumference is 3rd percentile, which explains why his little toddler bicycle helmet nearly covers his eyes. It looks pretty funny. I'm going to put some more foam in it so it doesn't bother him so much and maybe it'll fit better.

While we were waiting for the doctor, his assistant gave me a check list of milestones for an 18 month old. First question... Does your child walk fast and walk backwards? Uh, no, but he can pull to stand and is starting to cruise... Next... Can he say 4 to 10 words? No, but he can sign 5 or 6 words... Can he climb into and sit in an adult chair? Got me there...

I started to answer the questionnaire, but I got hung up on each question and was writing, "No, but... " When the doctor came in, I asked him for a 12 month old's check list and that was much better. He had met all the milestones except for the verbal communication, which he makes up for with signs.

In so many ways, John Michael's growing by leaps and bounds. He's super-active and engaged. He loves to explore his environment. He likes people and loves to shake hands. He's communicative with body language and some signs. He's pulling himself to stand on everything around him and has recently started cruising. This week he surprised me by using the kitchen barstool as a walker to go a couple feet, step by step.

He can nest cups and stack 2 or 3 blocks, put things "in", can find hidden objects wrapped in a bandana... He pushes cars and trains and balls all over the house. He signs "dog" whenever he sees or hears a dog and says "K" when he sees our cat. He also says "K" for big brother, Nick. He says Dada, but not Mama. He points to objects (with his middle finger!). He vigorously signs "more" when he really wants something, like frozen yogurt tonight. It was so funny, he just kept signing more... I guess it was that good :-)

Over the past several weeks, he has occasionally fallen asleep in his crib after I put him down still awake. This is so much better than always waiting for him to fall asleep in our arms first. He usually sleeps from about 8:00 or 9:00 pm to 6:30 am. If he's teething, we usually have to get up a couple times to soothe him and give him his Binky or some Tylenol.

Below are some photos from this week. In Music Therapy, he got to play a new instrument, the cabasa. It is a fabulous instrument that had him using his fingers, improving his fine motor skills. He loves his MT sessions and stays pretty focused while she's here.

In the other photos, he devoured his first whole apricot. In the last photo, I asked for a bite and he quickly offered it to me. He is understanding so much and following simple directions as well. This is a very exciting time to watch him grow and develop.

My biggest concern is whether he's getting proper nutrition from his food. I try giving a liquid vitamin, but he hates the taste. If anyone has a good website that has ideas for healthy toddler food, please share it here.

Working his fingers on the cabasa.

Loving his apricot. Mmm juicy.

Can Mommy have a bite?

Wordless Wednesday

I love that smile -- even hiding behind the Binky!

Keeping up with the news...

Mom, can we please go out?

Now?

"Does your son have Down syndrome?"

This is the question I was asked earlier today while shopping at Goodwill for more costumes for the Oliver musical.

"Excuse me. Does your son have Down syndrome? He looks like it."

Well, I thought, this could go anywhere. What do you say? "Thanks?"

I just smiled and said, "Yes, he does."

She quickly explained that her nephew has Down syndrome and he's super cute and John Michael's eyes look like her nephew's eyes. He's four, she said, and is learning to sign at a special school. I didn't ask any questions, but she felt like sharing. She didn't hesitate to tell me that "they" (kids with Down syndrome) are all sweet and loving and quiet.

To that, I smiled again, and said, "He's not always quiet, but he's certainly loving and sweet."

She quickly replied, "Oh, I don't mean to say "they" as in grouping them all together, but it does seem that way. They are such beautiful children and I love your son's eyes."

In her own quirky way, she actually touched my heart. I know it was a slightly awkward moment. For me, it was her opening line that got me. Of course, John Michael "looks" like he has Down syndrome, but honestly, that's not what I see. So it took me off guard when someone actually said it out loud.

I see a sweet, loving, stubborn, cute, strong, quick, able toddler, who's making his way in this world one step, one milestone, one victory at a time. And, I'm so glad he's taking me along on his journey.

Happy Mother's Day -- My Favorite Spring Things...

These are a few of my favorite "Spring Things" -- photos from my garden.

I wish all of you moms out there, especially first-time moms, a very special Mother's Day! I am grateful that each one of you has blessed my life in countless ways.

I want to share a very special poem written about mothers by Cardinal Joseph Mindszenty --

The Most Important Person on earth is a mother. She cannot claim the honor of having built Notre Dame Cathedral. She need not. She has built something more magnificent than any Cathedral-a dwelling for an immortal soul, the tiny perfection of her baby's body...The angels have not been blessed with such a grace. They cannot share in God's creative miracle to bring new saints to Heaven. Only a human mother can. Mothers are closer to God the Creator than any other creature; God joins forces with mothers in performing this act of creation...What on God's good earth is more glorious than this: to be a mother?

Happy Mother's Day from me, "John Michael's mom" :-) to you!

Wordy Wednesday -- Bathtime Fun

I love the idea of Wordless Wednesday (well, it's Wednesday on the east coast!), but do you know how hard it is not to write something? So, I'll keep it brief...

Now that he's pulling up to stand, it's almost impossible to keep John Michael sitting. His favorite thing to do while taking a bath is to throw toys out of the tub. When he's not bathing, he throws things into the tub. He also has a newfound love affair with trains, especially Thomas trains. I'm thinking I'll have to pull out Nic's wooden Thomas set out of the attic this summer. John Michael doesn't really suck on toys, but I think I'll wait a little longer since there is probably lots of lead paint on those old trains!

Ahhh!!! I'm going to Scream!!!

Edvard Munch's "The Scream" is exactly how I feel right now!!!

We just received news that the kids' school will be closed now until next Thursday due to the Swine Flu rearing its ugly head. I'm grateful that the school is taking the recommended safety measures, but I'm also starting to worry about all the work that the kids will need to make up before the (very busy) school year ends.

This seriously cramps everyone's style... I feel for the parents who work full-time and don't have the flexibility that I do.

Word to the wise... Be proactive, wash your hands all the time, stay healthy, and while you're at it, eat your vegetables and take your vitamins!!! Ugh!!!

Welcome, Mr. Finn'agin!

Thank you for your notes of sympathy for Mr. Fins. He really is in a better place since wherever he is (or isn't), he certainly isn't being overfed :-)

So, let me introduce our newest family member, Mr. Fins II, better known as "Mr. Finn'agin".

With the kids being home all week due to the Swine Flu hitting four students at our school, we've had to come up with some ideas to keep things fun around here. On Monday, we visited the pet store to see if they had a new shipment of Bettas.

There were so many beautiful colors to choose from. At first, we looked for a Betta to resemble Mr. Fins, i.e., same color and type, but this guy was so friendly and beautifully colored that we chose him. He swims toward the kids' fingers and shows off his glorious reddish pinkish fins for us.

Today, Day 4, he's still alive and active. The kids fed him his second meal of 3 pellets (twice a week!), and while we were at the bookstore this morning, he munched away the first 2.

Here's hoping we'll have Mr. Finn'agin for a long(er) time!

R.I.P. Mr. Fins...

The kids got a Male Crowntail Betta fish for Easter. He was beautiful -- turquoise and pink. He was on the young side, the store clerk said, so he would grow and be with us for many years. Feed him only 2 times per week and change his water weekly. That's it.

Well... the fish food container said to feed him 2 to 3 pellets twice a day. Surely, we didn't hear the clerk correctly and I didn't want Mr. Fins to starve. So we fed him religiously -- twice a day. We even made a feeding schedule for the kids to remember. You can see 2 pellets floating above his head.

By Day 5, Mr. Fins was swimming sideways. Hmmm, I've never had a fish before, but maybe he's tired. Day 6 -- Mr. Fins! Mr. Fins! He was at the bottom -- totally still. "Kids, I'm sooooo sorry. It looks like Mr. Fins died. I guess we overfed him... I'm sooooo sorry!"

Greta cried big tears. Anna was sad. Nic was mad at me for insisting we feed him more often than the store clerk suggested. Mea Culpa, Mea Culpa, Mea Maxima Culpa!

Getting ready for Oliver!

The Artful Dodger and an unsuspecting Street Urchin

Practicing the art of pickpocketing...

My two older kids have to stay home this week due to a student at their school contracting the Swine Flu!

So to make the most of their time at home, we headed to our newest Goodwill store and scored some great pieces for the school musical, Oliver! Nick is playing the Artful Dodger and loving every minute of it. If you're not familiar with the story of Oliver Twist, Dodger is a young, skilled pickpocket. He was testing his newfound skills on his sister, Anna, an unsuspecting Street Urchin. John Michael and I were having fun watching them get in their roles.
On another note, John Michael has a terrible cold. His nose won't stop running and he absolutely HATES having his nose wiped or sucked out (I would, too). He's also coughing, fussy and isn't sleeping well at night. The doctor confirmed it's "just a cold," but I'd rather be safe than sorry with the Swine Flu here in the area. Here's hoping for a better night!

40 years of preparation...

It's been 9 months and 50 posts since I began blogging and boldly proclaimed "My Purpose" for the world to see.

Looking back, I wasn't sure if the blogging bug would catch on, but I just kept posting. Receiving encouraging comments has been a huge motivator for me to keep writing and I'm grateful to everyone who has read my blog and commented.

I'm one of those people who starts many hobbies and projects, only to find them lying in boxes or baskets in various stages of completion. I've always wanted to be good at something, so I tried decorative painting, beading, knitting and crocheting, and scrapbooking. My interest would stay for a few weeks, I'd buy all the supplies, but then lose interest.

When it comes to writing, I compose entire essays in my head while driving, cleaning the kitchen, watering the garden, or changing a diaper. But by the time I sit to write, often after the kids are in bed, my "Four Kids, Sleep-Deprived and Over 40 Memory Deficit Syndrome" kicks in and I forget what I've composed. Blogging allows me to quickly type and edit my thoughts. Hitting the "Publish Post" button gives me the sense of accomplishment that I don't get from other hobbies.

I was at a dinner party last weekend and saw my friend who'd asked me 9 months earlier if I knew my purpose in life. I'd just been reflecting on that earlier in the day. I told her that I found it ironic that God had prepared me for 40 years (a significant number!) before giving John Michael to me and revealing my purpose in life. Not everyone has to wait 40 years to know their purpose in life, but God in His wisdom, knew I needed time to get to where I am today to be the best mother to John Michael and my other children that I can.

Thanks for reading and sharing in our journey.

50th Wedding Anniversary!

Dear Mom & Dad,

Happy 50th Wedding Anniversary -- today, April 16, 2009!

I am so proud of you two for reaching this huge milestone -- one that few couples will achieve in their lifetime. Congratulations, Mom & Dad! We all love you very much!

As a special gift to you, I have created something special to help share the memories of 50 years together with your family and friends. Click on your wedding photo above, or on the link below, to go back to April 16, 1959.

Enjoy! www.wernerundinge.blogspot.com

And the Greatest of These Is...

LOVE!

Baby Goats and Happy Birthday!

A few weeks ago, we were invited by a couple from our church to see their baby goats. Being suburbanites, our kids haven't experienced much country farm life. And while these goats live only about 7 miles from us, it felt like we were transported back in time -- to a sweeter, slower time.

John Michael loved petting the "kids" (baby goats), but was a little nervous around the protective mother. She stepped on my foot covered only by a thin ballerina flat and boy, did I feel it! Yikes!

On a separate note -- it's my sweet Greta's 4th birthday today.

For her birthday, she really wanted some Moon Sand, so I got her a play set and a couple books. She brought cupcakes to preschool today and will have her party with friends on Saturday.

Happy Birthday, Big Girl! I can't believe you're 4!!!!

This is the Day...

that the Lord has made. Let us rejoice and be glad in it! Alleluia!

Happy Easter from our family to you and your families! I've enjoyed blogging and getting to know some great (mostly) moms who have a child with Down syndrome. I've learned so much from your collective wisdom.

What a difference a year makes! I thought it would be fun to take a photo of the kids in the same place as last year. The May 2008 photo has been one of my favorites of all four together, so I tried to re-create it. Greta was giving me the dramatic "I don't want to smile" look and John Michael at 6 months old was too busy with the rope on the swing to notice. Nicolas and Anna keep growing up!

Easter 2009

May 2008

Happy Easter!

from John Michael and his family to you...

What Part of Spring am I?

I am "Chirping Birds"

"You are a very caring person. You especially feel for innocent beings, like animals and children. You are keyed in to the world and very peaceful. You believe that everyone is connected. You remain focused and in the moment. You are not easily distracted. You have a good memory, especially for things that you hear. You listen carefully." * * * I love the little bird image and hearing chirping birds in my backyard! I love spring and being outdoors. The 1st paragraph is right on, but the 2nd is pretty off at this stage of my life. While I can be focused, I tend to be easily distracted, I can't remember past 5 minutes ago, and I learn best by seeing and hearing. Oh, well... What part are you?

Good Friday

We adore you, O Christ, and we praise you, because by your holy cross You have redeemed the world.

"It is accomplished; and bowing His head He gave up His spirit." [John 19, 26-30]

As Jesus hung on the cross, he forgave the soldiers who had crucified him, and prayed for his mother and friends. Jesus wanted all of us to be able to live forever with God, so he gave all he had for us. Jesus, let me take a few moments now to consider your love for me. Help me thank you for your willingness to go to your death for me. Help me express my love for you! (from Catholic.org)

Lord, by shedding his blood for for us, your Son, Jesus Christ, established the paschal mystery. In your goodness, make us holy and watch over us always. We ask this through Christ our Lord. Amen.

Wordless Wednesday

Look who surprised me just now by pulling himself up to stand and supporting with only one hand! Thank goodness I was camera-ready!

Way to go, John Michael!

Big sis Greta and John Michael sharing a sweet kiss!

John Michael's New Friends

Yesterday afternoon our family met some new friends at a local park. These four little cuties, all chromosomally enhanced, spent a couple hours together while we moms chatted and got to know each other and the sibs and dads played soccer and baseball in an adjacent field.

From left to right: Sheridan 7 1/2 mos. (mom Lisa), Gabrielle 11 mos. (mom Sheree), John Michael 16 1/2 mos. (my guy), and Joaquin 14 mos. (mom Jennifer). Three of us are blogging moms, so it was fun chatting about that as well.


John Michael is responding to, "How big is John Michael?" "Sooooo big!" He had a blast trying out everyone's toys. He especially loved playing with Sheridan's ball with the shaking beads in it!
Thanks for sharing, Sheridan. Everyone loved the sounds it made.

I love this photo! Joaquin gave me a huge grin. He's so cute! He's sporting a handsome outfit his stylish mom designed! You can order your own at Jennifer's other website: http://www.addyandsam.com/. Gabby was the lone female of the bunch, but she didn't seem to mind. She is such a beauty and that outfit -- darling! John Michael was flirting with her by trying to yank out her pretty white bow. He is so into hair these days and, apparently, hair accessories, too. Sheridan has some beautiful hazely greenish/blueish/brownish eyes. I can't describe them, but he gets them from his mom. He's also sporting some super long curls on top which John Michael couldn't resist!

The afternoon was great for connecting us moms and allowing us to talk freely about life with our little ones. Without a doubt, all the moms there feel blessed to have their children. There was another bigger guy at the park, Thomas at 3 yrs old, with his mom, Dawn. He was super busy playing on the climbing structure and keeping his mom on her toes, so we didn't get to visit with her very much. Hopefully another time.

After the park, our family headed to an old ice cream fountain with Jennifer's family for diner food and ice cream. It was great to see the kids interacting and it felt great to connect with another family who is on a similar journey as ours.

Weeds! Long post, but there is a point!

A few weeks ago, Greta and I were taking inventory of the backyard to see which flowers were growing and where the garden needed attention. She spotted a dandelion "flower" sprouting up in the wheelbarrow and decided to transplant it to a more prominent flower bed. With shovel in hand, she carefully moved the flower to my rosebed across the yard and watered it. She was so proud of her gardening efforts that I left it and didn't tell her it was just a weed.

While working in the garden this afternoon, I noticed that her flower had grown to about 7 inches tall and its florets were getting ready to bloom. I pulled it out of the ground and showed it to her. "Look how big it's grown! Time to pull it out... since it's just a weed."

She gave me that serious look of disappointment. Instantly, I realized the message I'd given her was that undesirable flowers were called weeds and were not worthy of being in my garden of real flowers.

I replanted the dandelion.

I apologized and told her the yellow flowers would look nice among my pink cyclamen, pale yellow roses and bright red snapdragons. She seemed very pleased.

It was then that I was struck with the thought that our society views people with Down syndrome as weeds among us flowers -- often plucked before they are allowed to bloom. It's shocking that 9 out of 10 women will choose to terminate their baby after a prenatal diagnosis of Down syndrome.

I'm not saying that every "weed" in my garden will now be blooming, but I thought of how ingrained we are with the idea of perfection, even when it comes to flowers in a garden. Have you ever seen dandelions blooming en masse? They make a beautiful, fragrant carpet of yellow in a grassy meadow which are adored by bees and some butterflies for their sweet nectar. Once the flower has withered, children pluck the fluffy white seeded heads and blow to make wishes. But it must have more purpose than that!

I looked up "dandelions" on the internet.

"The dandelion is one of the most common and recognizable weeds. The official name for the dandelion is Taraxacum officinale, which means "official remedy for disorders". There are many common names for dandelions, including priest's crown, Irish daisy, monk's head, telltime, blowball, and lion's tooth."

Interesting.

Here's something more...

Dandelions can be beneficial to a garden ecosystem as well as to human health. Dandelions attract beneficial ladybugs and provide early spring pollen for their food. In a study done at the University of Wisconsin, experimental plots with dandelions had more ladybugs than dandelion free plots, and fewer pest aphids, a favorite food of the ladybugs. Dandelions long roots aerate the soil and enable the plant to accumulate minerals, which are added to the soil when the plant dies.

OK, now I'm starting to feel bad...

Not only are dandelions good for your soil, they are good for your health. According to the U.S. Department of Agriculture, a serving of uncooked dandelion leaves contains 280 percent of an adult's daily requirement of beta carotene as well as more than half the requirement of vitamin C. Dandelions are also rich in vitamin A. Dandelions are also used as herbal remedies. The white sap from the stem and root is used as a topical remedy for warts. The whole plant is used as a diuretic and liver stimulant.

So my point in all this is... and there is a point...

To every thing there is a season,

and a time to every purpose under the heaven:

a time to be born, and a time to die;

a time to plant, and a time to pluck up that which is planted

Ecclesiastes 3:1-2 KJV

That single dandelion has a purpose, as do all dandelions. They may not look like other flowers and may not be as fragrant as other flowers, but they are more like flowers than different and they have a great purpose in life's garden. So, I'm not pulling that dandelion out. I'm going to let it be a dandelion. And at the right time, I will pluck it up, but probably not before it gets a fuzzy little seeded head and I let Greta blow her wish across my yard.

People with Down syndrome may not look or learn the same as most people, but I know for certain that each one of them is here for a "purpose under heaven" and they have special gifts to share. This is the message we need to spread. They truly are more like us than different if we just take the time to look.

Dandelion info from: http://www.pesticide.org/dandelions.html

First Bike Ride!

I love riding bikes with the family along the American River bike trail. The trail is shared by serious cyclists flying by with their colorful jerseys, joggers, dog walkers, and casual riders like us. Whenever we have a new baby in the family, though, we have to put family bike rides on hold until the newest member can safely sit in the seat on the back of my bike, or ride in the bike trailer.

Well, John Michael made his debut in the bike trailer today alongside big sis, Greta.

As the six of us headed out to the river, it didn't take but 5 minutes before he fell asleep. He missed all the sights, sounds and smells that accompanied us on our ride -- the purple wildflowers, the sweet smell of fennel, black butterflies flitting from bush to bush, ducks and seagulls sailing in the water, bluebirds flying from tree to tree, swallows swooping over the river, dogs on leashes, wild turkeys in the meadow, and the cutest little pug being petted by everyone down by the river's edge. After a 40 minute ride and a small detour to a kayak launching pad, we rounded the corner to Starbucks. (Yes, wildlife and nature mixed with suburban convenience.) John Michael woke up and enjoyed the sunshine and shared Jamba Juice with his siblings while Doug and I pumped ourselves up with some dark roast coffee. The ride home lasted no more than 10 minutes, but he enjoyed every minute of it. Yay, we're mobile again!

I couldn't resist! An April Fool...

Monica at mi2boys inspired this idea for April Fool's Day.

Greta loves getting attention and playing with makeup, so this was perfect! She's such a ham. I wonder if her siblings will believe she really got punched at preschool. They are even more gullible than I am :-)

Last year the kids froze a spoon in a bowl of milk overnight and in the morning poured cereal over the top with more milk and served their dad a nice April Fool prank. This year, Nicolas thought it would be funny to put Saran wrap over the toilet bowl. But after explaining why it would be disgusting if it actually worked, and adding that he'd have to clean up the mess afterward, he changed his mind. Good thinking...

Wordless Wednesday -- "What's Up?"

Count me in! I pledged, have you?

Feeling Sentimental... It's all in a name.

I was taking a walk with John Michael and our dog, Mitzi, this morning on the nature trail behind our house. The planes and helicopter were buzzing overhead, the finches were flitting and chirping in the old oaks, the cat was slyly following us and ducking behind each tree along the way, and the sun was bright and cheery, warming us in its glow. Perfect for feeling sentimental.

I've often thought of why we called our little guy John Michael. Always by both names, not just one.

When I was pregnant with him, we called him Thomas for the longest time. But in my 8th month, Thomas just didn't feel right. John Michael, two very strong Biblical names, and also the 2 first names of Doug's brother and mine, we knew it was the right name. The only problem was that we'd named a baby I'd miscarried before JM was conceived by the same name. We don't know if it was a girl or boy, but the kids and I wanted to honor the little soul with a name. I came to terms with the idea of naming our newest little guy with this powerful name and I'm so glad we did.

His name means "God's grace" and "One who is like God". With a double name like that, who wouldn't agree that John Michael's life is nothing but filled with God's grace and he radiates that grace to those around him? There is no doubt that he is a gift from God and since God makes no mistakes, I know he was intended to be born with that extra set of 21st chromosomes. Bonus genes. Designer genes. Heavenly genes.

Lemons to Lemonade Blog Award!

Renee at My Special Ks presented me with the Lemons to Lemonade Award!! Thank you so much, Renee!



Here are the rules for the award:

1) Put the logo on your blog or post.

2) Nominate at least 10 blogs that show great attitude or gratitude.

3) Link to your nominees within your post.

4) Let the nominees know that they have received this award by commenting on their blog.

5) Share the love and link to the person from who you received your award.
I nominate:

1. The Adventures of Homeschooling Noah
2. mi2boys
3. Cause of Our Joy
4. Mothering by the Seat of my Pants
5. My Little Saint
6. Big Blueberry Eyes
7. Rivers of Joy
8. Ruby's Life
9. Three's a Charm
10. Bridget's Light
11. Down Right Faith

Wordless Wednesday -- GUILTY!

When I found John Michael, he was happily splashing his hands in the shower and playing with his Lego truck that he'd also tossed in. The basin was still wet from morning showers. He looked up and gave me a huge smile at his newfound discovery of opening the door and climbing up and over the rim. I would love to have captured that on camera. It's only at those moments when my batteries fail! I raced to the car to get my cell phone camera, but by then he'd decided it was time to get out. He was soaking wet!

John Michael's ready for Spring!

Spring is still a day away, but John Michael just
couldn't wait to get outside in this gorgeous sunshine.

This is his sign for airplane.
He gets very excited when he hears the buzz of an airplane overhead.

John Michael turned 16 months old last week. He is growing by leaps and bounds, although not in the height or weight department. At his 15 month check up last month, he hadn't grown in length in the past 3 months and actually lost 2 pounds, from 28 to 26 pounds, since he started crawling and is no longer nursing. The doctor suggested I give him PediaSure for vitamins and protein. He eats well, but doesn't love whole milk as much as he should. He drinks very well from straws and sippy cups that don't have a strong valve. He learned to suck from a straw last summer when I tempted him with a Jamba Juice fruit smoothie. The icy sensation and the sweetness were great motivators.

This past week, John Michael has really blossomed in his communication. Yesterday, he said "eh-duh" for Greta and "dah" for dog several times when prompted. Today he waved and said "bah bah" when I asked him to say bye-bye. He also makes a "t" sound for tree and puts his hand up in the air to show me the tree. As for signing, I'm becoming more consistent and in return he signs "more," "eat" and "all done" more often. He crawls super-fast and loves to chase and be chased. He loves all things that roll, especially cars, trains and balls. When he gets up on his knees, he puts one foot down as if ready to stand. He really likes to stand against furniture or the windows.

Last week I bought him a FisherPrice plastic ring stacker to see if he could do it. He figured out how to put the rings on right away. Now we're going to work on size/color placement. He loves all things related to music-making. He loves to play the piano and really listens when he strikes the keys. He plays the xylophone, kazoo, drums, egg shakers and strums on his music therapist's guitar while she sings and plays. We're working on blowing into a recorder. It's a bit harder than humming into a kazoo. He'll get it.

When we're outdoors, he loves to swing and go for walks in the stroller or push car. He listens to the birds chirping, dogs barking and airplanes buzzing and makes me aware that he hears them. I'm hoping he'll like the toddler bicycle seat attached to my bike so we can enjoy rides as a family within the next few weeks.

I tend to focus on John Michael's strengths and keep a positive outlook. I want people to see the things he can do and that he's more like typical children than not. A couple days ago I ran into a friend I hadn't seen in a long time at the grocery store. She asked me 3 or 4 times, in that certain way, "So, how are you?" I kept saying we're doing great and life is just busy right now and things are just rolling right along. I think she was wanting to know if I was really OK. Or if John Michael was OK. I hope she believed me.

Naturally, there are things he does that I wish he wouldn't, but I've can say that about each of my kids at every stage of their development as well. I know he'll grow out of these things and I don't think they're in any way related to Down syndrome. Right now, he is infatuated with knocking over garbage cans, opening the shower door and slapping his hands in the water, playing with (and tasting) dog food and water (which have already been moved from the first place he found them), pulling the dog and cat's tails, tossing his sippy cup off of his high chair after almost every sip, rolling the salt shaker across the kitchen floor when he can get to it, and yelling loudly when he's frustrated with something he's not getting. These are just a few things I can think of. Most of the time, he really is a super fantastic little guy with a charming personality and his Down syndrome is only a small part of him. It doesn't define him.

PS: I'll be on a road trip with my 2 girls this weekend to visit my parents who will be leaving soon to celebrate their 50th Wedding Anniversay in Germany on April 16th. When I return, I will post on poop. :-) I've been called the "Poop Whisperer." John Michael used to be very constipated, but through tummy massage and prompting, I've been able to help him do his daily deed. Stay tuned and Happy Spring! :-)

John Michael's latest obsession

OK, I don't know if this is really blog-worthy, but it's a memory I want to keep, and if I don't write it down, I'll definitely forget it.

For several months now, John Michael has had a "thing" for my vacuum cleaner. Aren't kids usually afraid of vacuum cleaners? This particular one is so powerful, I don't doubt it could suck up little fingers and toes if they weren't attached so well. (Disclaimer: This is not an endorsement of any particular brand and, no, I'm not being paid to advertise, but it is the most powerful vacuum cleaner I've ever had and I've been using it for several years now. It picks up everything.)

With four kids in the house, I vacuum crumbs and dog hair off the tile at least every other day, sometimes daily. On weekends, the older kids take over the vacuuming duty. I do it so often, the dog starts heading for the back door as soon as I roll the vacuum out of the closet. John Michael, on the otherhand, will crawl from wherever he is, as fast as he can, to touch it and, yes, even kiss it. It's disgusting! Maybe that's why he's been relatively healthy? Kissing the vacuum cleaner?

It's actually quite funny at times since I literally have to play "dodge the baby" with him. I vacuum and he chases me to get his chunky little fingers on the goods. It makes my job go a whole lot faster, that's for sure. If I'm not in the mood to speed through cleaning while being pursued by a 27 pounder, I put him in the high chair at snacktime. We had a little extra fun this morning since I also had to mop the floor. I use a plug-in steamer mop, which he thought was pretty cool. His jeans actually helped dry the floor in record time :-)

Oh, and yes, that's my Christmas poinsettia in the kitchen window in the distance and mini potted Christmas trees outside the window. I don't have the heart to toss them out while they're still healthy and vibrant, but I'm ready for spring!

Kreativ Blogger Award!

Monica @ mi2boys (http://mi2boys.blogspot.com/) awarded me this very cute blogger award!

Thanks, Monica! How very sweet of you to think of me -- I appreciate it very much!

The way this blog award works is that I am supposed to list 7 things I love and pass the award to 7 blogs I love, so here it goes:

1. Spending time with my family!
2. Nature walks and picnics with the family.
3. Blogging and reading blogs about families who have a child with Down syndrome (my creative outlet).
4. Quiet time or naptime (not mine).
5. Singing in an awesome vocal group for 9 years (my stress reliever).
6. Riding bikes along the American River Parkway.
7. My faith and church family (my spiritual outlet).

Now for the hard part. A couple bloggers already have this award, so I don't want to repeat...

Here's my Magnificent 7 in no particular order:

1. Bridget's Light
2. EmmaSage
3. Mothering by the Seat of my Pants
4. Finnian's Journey
5. Ella Grace with the Pretty Face
6. Party of Nine
7. Big Blueberry Eyes

My dream sons...

I love the dynamics of my family and each person's relationship with one another. In this photo, taken an hour ago, Nicolas was patiently holding John Michael while I filled the bird feeders. Watching these two together always makes my heart melt. It was one of those moments where I dropped everything and ran for the camera. Thankfully, they obliged with nice smiles.

I haven't blogged about Nicolas because it would be easy to get on the bragging bandwagon with him. At 11 1/2, he stands at 5' 5", is a model student, a born leader, altar server, 2nd class Boy Scout, and sax player to name a few. He's kind and caring (although 9 yr old sister Anna may disagree) and makes us all proud. He is a dream son. I could go on, but I don't want this to sound like one of those over-the-top Christmas letters where the font on the page gets smaller and smaller to include every accolade and achievement EVER. :-)

When John Michael was born and we shared his diagnosis with our kids, Nicolas would often share his sadness with me at our nightly prayertime. He wasn't concerned about John Michael being different as much as he wanted him to be healthy and do things "normal" kids could do, like play Legos and ball. The two boys share a room, and as John Michael's personality developed, so did Nic's love for him. In the early morning hours before I would pick up John Michael to nurse, Nic would often get out of bed to give him a Binky to comfort him. Nic still does this, but on the rare occasion that Nic is still in bed when John Michael wakes up in the morning, the little guy will sit up on his knees, throw his Binky on the floor and reach out to Nic. It's so sweet.

Before Greta and John Michael were born, I used to have a recurring dream about a little blonde boy that would walk behind our family. At the time, I thought our family was complete, but always wondered if this was a message from God that He wanted us to welcome another child. Greta, being a girl and a redhead, didn't fit that particular dream, so I tucked it away. (That being said, Greta is a wonderful, joyful addition!) After John Michael was born, I wondered if this was the little blonde boy God wanted me to have -- the one who would walk a few steps behind, but always be part of our family. I'm now convinced that this is that little guy. I can still see the face of the little boy in my dream and I think it's symbolic that the little boy walked behind us to indicate John Michael's Down syndrome would perhaps slow us down a bit. In a good way. John Michael is literally my dream son -- a special and unique gift from God.

Premio Dardos Blog Award!

Cheryl at Ruby's Life has awarded me the Premios Dardos blog award.

“Premio Dardos means ‘prize darts’ in Italian." This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

So, first, I graciously accept. How very nice of her!

Step 1: Respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: Tag - eight other bloggers to do the same.

1) What are you wearing right now? A spring green cardigan over a white v-neck t-shirt, jeans, and my old Adidas casual tennis shoes.

2) What is your biggest fear? Rolling down a cliff or off a tall bridge while driving.

3) Do you nap a lot? Huh? No, but I love when the little ones are napping :-)

4) Who is the last person you hugged? My hubby

5) What websites to you visit when you go online? Lots of blogs about Ds and a Catholic Ds Facebook "ning" social network.

6) What was the last item you bought? Groceries for the week. Sad, but true...

7) If you could go anywhere in the world, where would you go? Carmel with my hubby or on a pilgrimage to Rome

8) If you could go to the Oscars, who would you want to sit next to? I'm not one to get starstruck. I'd be happy sitting next to someone whose work I respect .

9) Has a celebrity's hair cut ever influenced your own hairstyle? I had a Dorothy Hamill cut when I was in 6th grade.

10) What is your most embarrassing moment? Let's just say... in 2nd grade I had to go to the bathroom sooooooooo bad during class but the teacher said NO! You can guess the rest...

11) What was the last movie you watched? No Reservations.

12) What is the luckiest thing that ever happened to you? Meeting and marrying my husband.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do? Get a pedicure, drink a Tall Skinny Vanilla Latte from Starbucks and read a book by the pool (that we don't have) or going for a nice long walk in the woods with my husband and a picnic lunch.

14) Is there a major goal you have that you haven't yet achieved? Getting back down to my pre-mommy weight :)

15) Where did you meet your spouse? At a jazz club -- he and his friends sat down next to the table where I was sitting. When I wasn't looking, my girlfriends bought him a drink with my money. He turned to thank me even though I had no idea what he was thanking me for. We started talking and one of my friends told me later that evening that we would be married someday...

16) What is something that those in blogland might not know about you? I'm the daughter of German immigrants and played accorion as a child and I have a BA in Applied Math and Statistics.

17)What States and Countries have you visited as an adult? Native Californian, toured New Orleans w/ my singing group in 2007, so I've been to Louisiana; Also been to Oregon; Washington; Nevada; Arizona; New Jersey; New York, Vancouver, BC; Germany, Austria, Switzerland, Luxembourg, Hungary, Holland, Belgium, France. Some of these were from a choir tour in college.

18) What do you do to relieve stress? I sing in an awesome mostly a capella vocal group, called RSVP, which stands for Reconciliation Singers Voices of Peace. We are all professional or semi-professional college-trained singers that use our talents to raise money and awareness for local charities.

Now for the fun part. I enjoy many blogs out there, and only choosing 8 is hard for me. If you've already been tagged, consider yourself extra special -- If you don't want to pass on the questions or blog award, I won't be hurt, either.

I tag:

My Catholic friend at The Pondering Catholic

Amy at My Little Saint

Leticia at Cause of Our Joy

Jennifer at Pinwheels

Jeanette at DownRightFaith

Chris at Mothering by the Seat of my Pants

Renee at My Special Ks

Beverly at Adventures of Homeschooling Noah

John Michael at 15 months...

At 15 months old, John Michael is growing up so fast in so many ways. He loves things that move, like this cute car he borrowed from his cousin. He loves to push Lego cars and trucks around the house and crawl after them. He loves to chase the cat when she taunts him with her tail. He likes to stand when I pull him up, and is working on trying to stand on his own. He loves to crawl and climb up to his knees at each chair and sofa and coffee table within reach and put toys on them. He definitely has the concept of "in" and "on". We worked with him for a while on putting things "in" and now he can do it without any difficulty. He's starting to stack 2 blocks and if I hold them still, he can sometimes stack a couple more. He still enjoys knocking towers down, especially the ones Greta so lovingly builds for him out of Duplo Legos. He plays a mean kazoo and loves to hear the sounds he makes. I bought one for him and Greta at the music store for 95 cents apiece. Best $2 I've spent in a long time! He loves to play the drums and xylophone and is very good at banging with one stick. When he has two, he usually puts the left stick down and bangs with his whole soul. He loves to shake musical egg shakers (also from the music store) or anything that makes a sound when he shakes it, as well as banging things together. He loves remote controls and telephones and usually mimics me on the telephone by putting it up to his ear. So cute. He is trying to say, "Mama" but his "B" sounds usually get in the way of "M". That's OK. I'm thrilled he's so close. There was a time when I would think he'd never say "Mama." He usually waves 'hi' and 'bye' and makes a "T" sound for tree. He says a short "a" for Anna and can say "Dada." He gives the best impromptu soft, wet kisses and will gladly give anyone a "high five." This little guy is so joyful and gives so much, it's hard not to fall head over heels in love with him.

Goodbye, Flu! or "Not so funny Valentine!"

Last week was quite a week for our family. It started out as the perfect Valentine's Day. My husband, Doug, gave me a dozen roses, a beautiful card and