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

Who wouldn't love this face?  :-) 

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

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

So much wisdom...

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

Look familiar?

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

I guess I'm feeling a bit nostalgic today.

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

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

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

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

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

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

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

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

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

Losing John Michael (for 5 minutes!)

Last Saturday, we visited the California State Fair.

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

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

This year, however, something very scary happened.

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

We LOST John Michael! 

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

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

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



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

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

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

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

The DS Sisterhood hits the trails...

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


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

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

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

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

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

I'm looking forward to seeing more moms tonight! 

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

Is it "Wordless" Wednesday already?

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

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



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



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

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

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

Happy Independence Day!

Greta with our "Little Firecracker."

Happy 1 month old, Luke!

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

"Wheeeeeeeeeeeee"

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

How are you spending your Indepedence Day?

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

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

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

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

Happy Independence Day!

"Seeing" Down syndrome...

When did you first "see" Down syndrome in your child?
At birth? Did you know before your child was born that he or she had Ds? Did it happen a few weeks or months later?

Soon after John Michael was born and taken away to the NICU, Doug and I were told that it looked like he had Down syndrome.

As if the news itself wasn't like being hit in the stomach with a bat and my heart pierced with an arrow, we wondered, "How can they tell? What do they see?" What physical features were obvious to them that we didn't see?

I found myself picking apart John Michael body part by body part, looking for Down syndrome in his ears, his eyes, the bridge of his nose, the shape of his head and neck. I could see he had short fingers and chubby, square hands, and short toes with a sandal gap and Simeon crease underneath. I noticed he didn't cry vigorously and was rather flaccid. Internally, the doctors told us about the 3 holes in his heart (PDAs) that may or may not close on their own. This, they said, was also a marker of Down syndrome.

It was all so much to take in.

We looked, we stared, we parsed him into "parts" and rationalized away the similarities.

To us, John Michael didn't look any different than any of our 3 older children. He was ours. We loved him.
In all honesty, the next couple weeks were fraught with sadness and fear. Every pre-conceived notion I'd had about Down syndrome popped into my head. Even the word "Mongoloid" came from the depths of my soul. I hadn't heard the word in at least 30 years, and yet it surfaced. I didn't know what it meant, I only knew that people used to say that for Ds. My thoughts turned to a deep sadness predicting that at age 80, we would still have a 40 year old son living with us. We'd never have our dream of traveling after raising our children. We'd always be "burdened" by having a child living with us... an adult child that would need our constant care and supervision.

Those early weeks, I pleaded with God to please take away the Down syndrome. I prayed for a miracle. I prayed hard. I apologized to God for being angry and not being positive during the early months of my pregnancy when I was still in shock that I'd have a baby at 40.

I tried to bargain with God, but no matter how hard I begged, John Michael didn't change. But God did give me a miracle. He changed me.

And I thank God to this day for that gift. A change of heart. Not long after, I was able to see John Michael as a gift to me, to our family, to our community. I still see it every day. That's what I see, not a diagnosis, but a blessing.

I can say now that when I look back at photos of John Michael as a baby, I can "see" his Down syndrome. I really didn't see it then. I often wondered if strangers in the store could "see" it. Sometimes I felt compelled to point it out. Strange, the things we do when we aren't yet comfortable in our own skin or in the skin our child is given. Today, I can boldly say, "Yes, he has Down syndrome, and he's an awesome little guy!" And I mean every bit of it. I can "see" it, but it really doesn't mean anything... John Michael is so much like the rest of my kids, and I pray that the rest of the world won't judge him based on his appearance. If they let him, John Michael will shine for all the world to see that Ds isn't something to fear. It's just a little part of what makes him unique, and I thank God for him every day.

Random photos from Father's Day and 1st Day of Summer

Me and Luke (17 days old) this morning, the official first day of summer. Sacramento will hit 90 degrees today, which seems appropriate, especially after the unusually cooler weather we've been having.

Luke's message for today... "be happy."

Nicolas enjoyed holding the little munchkin yesterday (Father's Day).

John Michael and Greta (with Mitzi) are enjoying a juicy plum out front with Daddy on Father's Day.

I still need to get a photo of all the kids together and another of just John Michael with Luke.  John Michael is doing "OK" with the baby, but usually tries to sneak in a pinch after his gentle touches, so it's hard to get a good shot right now.  Otherwise, my funny boy (JM) is doing quite well and enjoying the day with his grandmother today.

I hope your Father's Day was wonderful and that the start of summer will be filled with lots of sunshine and fun.

Holding Sofia!!!

Last night at the airport, I got the biggest treat! I got to watch little Sofia, a FORMER orphan from eastern Europe, arrive with her new Mommy and Daddy and meet her new brothers.  It's been a 6 month journey since Sofia was first placed in the hearts of Jennifer and Hector.   And after much anticipation, we welcome our first adopted baby with Down syndrome into our Ds family. 

Look at her smiling.  I think Sofia likes her Auntie Monica already.  I couldn't get over how solid and buttery soft this little princess is. She's about 22 pounds of pure cuteness.  After a 20 hour travel, Miss Sofia was all smiles, waving to all of us and letting each one of us "aunties" hold her.  My heart melted the moment I saw her and I'm so smitten by her precious smile already.



My photos are all a little out of focus as things were happening so fast that I couldn't quite capture everything quick enough. Lisa Lindsey at Genetically Enhanced took some great homecoming photos and video, too. Here is Mommy Jennifer with Sofia just moments after they got off the plane. Sofia really had her game-face on and if this is any indication of how she'll be with her new family, they are going to have a blast with her.

The new, complete Sanchez family of six!
I love how comfortable Sofia already seemed after having met her new brothers only minutes before. The most precious moment was seeing the boys kiss Sofia and especially Joaquin who, on several occasions, gave his new sister a precious kiss. If you don't know this family, check them out at Saving Sofia.

Mission Accomplished!

(Cheap) Summer Fun...

Summer has hit our region. Yesterday was our first mid-90's hot day and the kids were melting.

It's funny, but when you don't have a built-in swimming pool, the kids get creative.

Last weekend, the kids set up a homemade "Slip n Slide" on the front yard lawn that has a slight slope with tarps and a water hose running.  (Yes, I know it's wasteful... so we didn't let them do it for very long...) It also wasn't very smooth, so this didn't last very long. 

During the week, they begged to run through the sprinklers to cool off. John Michael wasn't a fan of spraying water hitting him at first, but with a little help from Greta and a bucket, he happily joined in the fun.

Yesterday, the kids reminded us that we still had an old plastic pool on the side of the house from last year. So they pulled it out, rinsed it, and filled it. John Michael didn't need any coaxing to get in this time. He kept saying "Baaah" (bath) and "Bubbles". And, yes, that bucket came in handy for dowsing big brother, Nic.

I don't know about you, but I don't think you have to spend lots of money to get some smiles like these. Just some good old-fashioned backyard fun.  What do you do for (cheap) fun?

And in case you wondering... my blog pause is finished. I just can't stay away for too long!

John Michael and Luke...

Peek-a-boo! Guess who?

John Michael, that's who!

John Michael... can you say "cheese?"
Poor In-n-Out hat didn't last very long, did it?

John Michael hasn't had much chance to be a big brother yet, since Luke is only 8 days old. It's been interesting to watch him, though. When Luke cries (the boy has some pteradactyl pipes!), John Michael comes over and signs "cry." He loves to feel Luke's hair and is very gentle with him... at first. But, a few times John Michael has patted Luke hard on the head, pinched his foot, or pulled his fingers. The whole time he does it, he looks right at my face to see my reaction. I think he's testing his limits and to see what's OK, and of course, it's not!

In general though, he's curious and interested in Luke. When Luke is sleeping, John Michael has signed and spoken a combination of three words together... he'll say "Baby", sign "sleep" and put his finger to his lips and say "shhhh". That's the most signs and words he's put together at one time, which is fantastic.  Lately, John Michael has been eager to try to label things around the home or outdoors or in books without prompting... usually with a word approximation or accompanied by a sign.  It's so encouraging, especially now that our therapies are done for the summer.

As for Luke, he's more alert and wide-eyed during the day. He loves to be held (what baby doesn't!) by all his family members and does pretty well at night, with usually one slightly longer awake period around 3 or 4am (ugh!), but Daddy takes over after I feed him.

We're finding our way in this new world of 5 children. It's been said many, many times, but I find that John Michael having Down syndrome was sooooo much easier as a baby than my typically-developing babies. Less crying for sure! I even remember John Michael only pooping once a week back then. Luke's plumbing works quite well, which means a whole lotta diaper changes throughout the day and night.

My mom was here all week helping with the transition.  Mostly, she helped John Michael pass the time by walking with him, taking him to the park, playing ball with him, or whatever he wanted to do.  She also held the baby so I could get my (fat!) feet up.  It was great to have her and I always hate to say good-bye.  Monday and Tuesday this next week I'll be solo unless I can get my respite gal to help. I'm totally nervous about that because it's impossible to nurse the baby while John Michael is wandering around, getting into trouble. Yesterday, Anna found him on her top bunk crying. Thank God he didn't fall or try to climb down by himself!  We'll eventually get into a routine and a rhythm... I just hope it comes sooner rather than later!

Luke signing off for now. 

Check out this guy's long fingers, arms and legs.  Future basketball player, perhaps?