Physical Therapy Playdate

Today we had the pleasure of having our adorable buddy, Hadley, over.  Josie and Hadley share the same physical therapist (our beloved Bea) so we all got together for a physical therapy playdate!

When you look up "Cute" in the dictionary, this is what you should see!

Josie showed Hadley her favorite toys including her farm animal figurines, her musical instruments, and of course, her singing animals!  Funny that Hadley zeroed in on the exact same toy that Josie loved the most when she was Hadley's age!

Then Bea arrived and started cracking the whip! 

Josie is working on a new method of getting down when she's pulled herself up because the stand-there-and-whine-for-help approach isn't working for mom.

Hadley is working on strengthening her muscles and learning to contain her excessive hip abduction.  Her mom said she rocks her Hip Helpers around the clock!

You go girl!

You know what else is really cool about Hadley?  She's got a sassy pants attitude face to rival Josie's and she's only one!  Her mom better watch out!

Having so much fun with her good buddy, Hadley, put Josie in a very affectionate mood.

This may look sweet but I'm pretty sure Josie is clenching her teeth hissing "Squeeze!" while trying to get her sister in a headlock.  It's her latest trick.

 Hadley didn't escape Josie's warm embrace either.

We hope she'll come back and play again soon anyway!

P.S.  Since I am a firm believer in the power of blogosphere prayers, we would really appreciate some prayers for Josie JoJo who is embarking on a little adventure tomorrow.  More on that later!

The Truth About Down Syndrome

Normally, we like to keep things light-hearted and fun here on CCE, but I was reading through various blogs last night after my girls went to bed and I ran across a post that spoke right to my heart and it inspired me to address this topic.  You can find the post here on Life's Little Surprises.  Shannon is a mother to a beautiful little girl who has Down syndrome and she wrote about the moment when you tell someone that your child has Down syndrome and you are met with pity and sadness, as though you've just announced that your child has a terminal illness. 

A few years ago, I made an appointment with a new hair stylist and we were making typical salon small talk when she asked about my family.  I told her that I have an older sister who has Down syndrome and she said "Oh - I'm sorry!"

I'm sorry?

I didn't announce that my sister just passed away.  I said that she has Down syndrome!  That comment hurt me and haunted me for days (it is obviously still with me) and I never returned to that salon.  That wasn't the first nor only time in my life that I was met with an attitude of pity or sympathy when I informed someone that I have a sister with Down syndrome, but it was perhaps the most blatant. 

And the thing is that this woman wasn't trying to offend me.  Her comment was spoken out of ignorance.  I've since realized that one of the most important callings that I have received in my life is to inform people that life with Down syndrome is a beautiful, purposeful, and abundant life worth living. 

I struggle with how to articulate this message.  In March, I wrote a guest blog post on A Perfect Lily and I said:

... I firmly believe that God creates people with disabilities to offer the rest of us a prism to view life as He intended us to view it; stripped of all materialism and superficiality.  Those of us who are lucky enough to get to look through this prism are forever changed...I hope (and truly believe) that anyone who encounters Leanne or Josie is relieved of ignorant misconceptions about Down syndrome and that those misconceptions are replaced by an appreciation for the value that Leanne and Josie bring to this world.

You can find the rest of the post here.

 My sister influenced my life in such a positive way that I decided to adopt a baby with Down syndrome.  My sister influenced my husband's life in such a positive way that he wanted to adopt a baby with Down syndrome. 

So in response to that stylist and everyone else who is inclined to bestow pity upon me, I say,

I'm sorry that you haven't had the opportunity to experience the incredible contributions that individuals with Down syndrome make to this world. 

I will spend the rest of my life trying to communicate this message.  If everyone was fortunate enough to experience the beauty that Leanne and Josie bring to our lives, it would undoubtedly make this world would be a better place.

Celebrating Small Victories

Josie and her sister, Merryn, are sixteen months apart.  When we became pregnant with Merryn, the timing surprised us a bit.  However, many people within the special needs community, including Josie's therapists, assured us that this was the best possible thing for Josie.  We were told that having a sibling so close in age would motivate Josie to reach her milestones alongside her sister.  Sibling rivalry would be a good incentive for Josie to work harder to keep up with her sister.  We were also told that because I was tending to a baby, I would not have as much opportunity to "baby" Josie, thus, making her more independent and self-sufficient.

However, this theory seemed to have backfired a bit.  As Merryn's gross motor skills began to develop, Josie utilized this to her advantage.  We've all seen Merryn pushing helping Josie in her gait trainer...

...although she doesn't look too happy about it here.

When Merryn began to pull up and cruise along furniture, Josie simply sat back and let Merryn pull toys down for her.

No, not the school bus!  I said the singing dog!  Geez, Merryn - listen!

Josie is delighted to sit and relax while Merryn does all the climbing and heavy lifting!

And the thing about Merryn (and typically developing kids) is that the skills that we've worked tirelessly - for months and months and months - to teach Josie, simply come naturally to Merryn.  She just started pulling up, cruising, and climbing the stairs.  No one really taught her or drilled her over and over with countless exercises.  Admittedly, the contrast between the two can be a little discouraging.

However, all the effort that goes into teaching Josie new skills, and all of the energy spent, and even the discouraging moments, make victory so sweet!  Fast forward to last Friday when I heard Josie whining in the playroom.  I poked my head around the corner to see what the problem was and I saw this:

I shrieked in excitement "Josie!!!!  You pulled up!!!!!"  and I ran and got the camera.  What seems like such a small thing for most kids (I honestly don't remember when Merryn first did it) is a huge step for Josie.  I clapped and cheered and made her do it again!  Then I emailed/texted Travis, her grandmas, and her physical therapist!

Of course this is not demean Merryn's accomplishments in any way.  We are truly proud of her as well.  But Merryn is 10 months old and Josie is nearly 27 months old, so it's taken her that much longer to conquer this skill. 

Small accomplishments are big deals when you have a child with special needs.

Three cheers for small victories!

Now, if she can only figure out a better method of getting down besides standing there whining for someone to come help her.  Stay tuned!

Josie's Jams - New Song, New Moves!

Josie (and everyone else in the nation) has a new favorite song these days.  And that's not to say that we've completely abandoned Usher, because he's still requested a few hundred times a day around here.  But JoJo is digging this new tune and she's introduced a couple of new dance moves to go with it.  Check it out:

Take that, Harvard Baseball Team!!!!

Here's to whirlwind weekends, brave babysitters and fantastic fathers

Well, this whirlwind weekend is finally winding down and I must extend my most heartfelt gratitude to Mama Hop and Aunt Leanne for their help with the girls.  Because it was so busy, I didn't have a chance to take as many pictures as I would have liked but here are a few...

As a consequence for the train "attack" on Merryn, Leanne grounded Josie from Starbucks on Saturday.  Josie was devastated, let me tell you.  I don't know how she made it through the day without her venti soy latte.  But Leanne did permit a little shopping excursion so that we could buy Josie some new shoes.  She has outgrown her orthopedics and it will take a few weeks to get more so we decided to spring for some summer sandals to get us by. 

Seeing as how it was a quick trip to Von Maur to run in and buy one pair of baby shoes, we didn't bring anything but ourselves.  However, upon pulling into the parking lot, something started to smell very unpleasant.  After wrongfully accusing Travis of the offense, I realized it was actually JoJo.  Amateur Mom Mistake #4,572:  A quick errand that doesn't warrant hauling baby supplies along will undoubtedly end in regret.  Note to self: ALWAYS bring the diaper bag!  Lesson learned.

 Travis and I went to a dear friend's absolutely beautiful wedding on Saturday night and we returned home to hear that the girls exhibited much better behavior for their Aunt Leanne than they had on Friday night.  No train wrecks, no tears, no problems!  Whew!  I would hate for Aunt Leanne to refuse to come back and babysit my little hellions. 

This morning Leanne helped Josie make a special Father's Day card for Travis.  

 There is really no better person to teach Josie how to design a card.  Aunt Leanne has a real knack for creating greeting cards.  In case you don't recall, you can read about it here.

 Leanne's card reads:

Starbucks

Happy Father's Day

Travis

Stir Fry Head

Decaf

Cream

Cafe

Love

Leanne

 The Starbucks theme is lost on Travis as he's not a coffee drinker, but Leanne tends to honor other people with her own preferences, instead of theirs.  Remember Mama Hop's Birthday last year?   She's still sporting that shirt and pants outfit Leanne picked out!  But I digress...

Without further ado, I'd like to wish Travis a Happy Father's Day.  My girls are very lucky to have such a wonderful dad, and it's a privilege to share this parenting journey with an incredibly loving and supportive partner.

Happy Father's Day, Travis.  We love you!

Adventures in Babysitting - by Aunt Leanne

hey everboby


we at siter elizabe th her nickname
fried rice
baby sitter
josie  catfish ketchup
 meymeron 

banana s streberries

nicname

not cool
 ground  forr life

attack people
play toys
pinic tables
   trrain trip over
tip over
silide

left
side

love leanne  chesesbgerheah
 nickname

Travis and I had commitments both Friday and Saturday so Aunt Leanne cordially agreed to babysit the girls (with a little help from Mama Hop).  When we got home on Friday night, Leanne shot out of her chair and proclaimed "JoJo attacked Merryn!  She's grounded!"  Apparently, this violent "attack" involved Josie tipping over the toy train while Merryn was riding on it, and according to Leanne, that is "not cool" and Josie is now "grounded for life." 

When it comes to babysitting, Leanne insists those nieces of hers toe the line - or else!  Tune in tomorrow for a more extensive update. 

The White Eyelet Photo Shoot

I am a sucker for eyelet.  That's why when I found these white eyelet bubble rompers at Old Navy, I had to get one for each of my little ladies.  They looked so adorable in their matching ensembles that it mandated a photo shoot. 

Of course Josie had better things to do...

...like pick her toes...

...steal her sister's headband...

 ...and point.  There was no shortage of pointing.

Hands up!  Has somebody been listening to Usher?  Only a couple hundred times a day!

Ok - you look this way and I'll look that way and let's make our best mug shot faces!

Apparently I don't feed my children enough so they must resort to eating ornamental grass.  Mmmm...tasty!

And just in case she hadn't made it abundantly clear that she did not want to participate in this photo shoot by sporting her "this is a waste of my time" face in 99% of the photos, Josie came up with a whole new way to sabotage my pictures:

What is that?!?!?  Nothing complements dainty white eyelet like a one-eyed goober grin.  Nice, Josie.  Very nice.

In her defense, the photo shoot took place at the end of a long and arduous day for Miss Josephine.  Our little diva knocked our socks off during treadmill therapy this morning by walking over thirty steps on the treadmill WITHOUT A HARNESS!  Woooooooo Hooooo!!!!  You go girl! 

Be sure to tune in again soon because Aunt Leanne will be rolling into town tomorrow.  She and Mama Hop have a busy weekend of babysitting ahead of them.  Let the adventures begin!

A Note from Aunt Leanne

When I was growing up, my mom placed great emphasis on manners.  If I had a dime for every time I heard her say "that's not very lady-like conduct..."  Oh, but I love her for it to this day!  Leanne was never excused from exhibiting proper manners simply because she had a disability.  She was held to the same high standards that I was.  We were reminded to place the napkin in our lap, chew with our mouths closed, sit with our legs crossed, and say "please" and "thank you" religiously.  Upon receiving a gift, we were required to send a hand-written thank you note immediately. 

Thanks to Mama Hop's tireless efforts, that sister of mine turned out to be one classy lady!  After her big birthday extravaganza, she sent us a very gracious thank you note on lovely stationary in a very prompt manner. 

Translation:

Dear Sis, Travis, JoJo, and Merryn,

Thank you for coming to my party and swimming at Michelle's house.  I had fun.  Thanks for all the presents.  I like the red and green shirts and pants.  I wear them to school. 

Love, Leanne

I give my mom a lot of credit and especially admire her for having the same expectations for Leanne that she had for me. The fact that she refused to make exceptions for Leanne empowered Leanne to achieve more, and it greatly contributed to the healthy sibling relationship that we have today.  It is my hope that I can do the same for my children.

This One Goes Out to YaYa

I know I'm relatively new to this parenting thing and I'm learning as I go, but sometimes these kids come up with things that just throw me for a loop!  Take for example, tonight: I was putting Josie's pulse ox probe on her foot singing to her and I kind of spaced out and stopped singing and she filled in the lyric!  It wasn't an Usher song and it's not really a song we listen to all that much so I have no idea how she picked up on it.  Although, I will admit, it's a catchy tune.  The first person I thought of was YaYa (to find out why, click on the "About Us" tab).  So I had Josie sing it again and I recorded it this time.  YaYa, this one's for you:

Travis, did you teach her that?!  I just don't know where she comes up with these things!  But I'm pretty sure at the end of our next visit with YaYa, she'll know a Bon Jovi song or two.  The kid will be doing karaoke in no time!

Shake that!

Week In Review

We have been noticeably absent from the blogosphere but with good reason - we have had a frantic, jam-packed, head-spinning, mind-losing, frenzied week of non-stop commitments.  Here's a summary, by the numbers:

2 - Number of road trips we took this week to the Down syndrome clinic where Josie had appointments for feeding therapy, physical therapy, speech therapy, a Down syndrome-related check-up, and a new Mic-Key button.

25 - (miles per hour) The speed I should have been going when I got pulled over by a law enforcement official during one of the aforementioned road trips.  Seriously, people - 25 MPH is difficult to do!  It's like riding your brake!

0 - Number of tickets I had received prior to Friday.  Mr. Police Officer did not seem impressed by my pristine driving record.  He did not care that I was voted "Best Driver" in high school.  He didn't even drop the authoritative scowl when I rolled down the window and Josie excitedly proclaimed "Glasses!  GLASSES!" when she saw that his eyes were covered by dark and mysterious shades.   He eagerly handed me my first ticket, EVER, hereby obliterating my flawless driving record.  I know I deserved it but it was still a major bummer!

5 - Number of days this week my girls wore matching/coordinating outfits.  Even though the cheesiness quotient is high, I can't help myself! 

4 - Number of folks we encountered this week who recognized us from the blog.  It's always so much fun to encounter blog readers even if most of you do seem completely disappointed that Leanne isn't with us.  I know, I know -  we love her, too! 

And the following are filed under "I can't count that high":

• Number of times Josie defiantly told me (and every therapist and medical provider) "No!" this week. Hello Terrible Twos!
• Number of Usher Songs I've heard this week. - I'd like to apologize to anyone who was dining at Buffalo Wild Wings on Wednesday night.  I realize no one wants to hear five Usher songs in a row topped off by Justin Bieber.  But when it makes your kid sit happily while you enjoy your meal, you'd gladly feed the jukebox dollar bills to hear the vocal stylings of Atlanta's finest R&B crooner.  And it was a genuine accident that the one song played three times in a row.  Travis was mortified.  I said, "No one knows we were the ones responsible" at which point he gestures over to Josie who was the only person in the restaurant gyrating in her seat with her hands in the air proclaiming "Hands up!"  ...Busted! 
 

And now for the photos...

Travis and Josie in the waiting room at the Feeding Clinic

The girls are still practicing walking with the gait trainer and it's become apparent that the motor is in the back. 

Travis' Dad was in town on business this week and the girls were preparing to show Papa how this new system works.  Merryn turned around to wave to Papa and without warning, Josie took off!  Merryn's feet fell out from under her but she hung on to the gait trainer for dear life and was drug down the hall as Travis and Papa collapsed into laughter.  It's a good thing Mom was there to save her :-)

Matching ensembles featuring summer's hottest trend - neon!  80's Flashback!

Speaking of our affinity for matching attire, we couldn't turn up for the first day of swimming lessons without coordinating strawberry bathing suits.  Lookin' good, Ladies!

Three guesses as to the music Josie was jamming to in this series of photos...

Funniest photo of the week

Note: The following two photos were taken during nap time so neither subject was up for posing.

We found time to squeeze in a long overdue trip to the doggy day spa for Miss Lillian.  Drop off and pick up were a sight to behold with a double stroller bursting with energetic munchkins and a feisty 4lb Maltese in the storage compartment below.

The most cautious child to walk the planet got her first bruise today when she somehow banged her head against the foot board on our bed.  Two years old and her first injury - a stark contrast to our youngest child who is a perpetually-bruised, fearless, daredevil.  Maybe Merryn is finally rubbing off on JoJo.  After a phone call to both Dad and Mama Hop where Josie pathetically proclaimed "Head!  Head!" over and over and milked them for all of the sympathy they could muster, she was finally able to move on with her day.

The length of that blog post undoubtedly compensates for a week of absence from the blogosphere.  Let's pray that this upcoming week allows us more downtime for blogging and other fun activities.  Stay tuned - Aunt Leanne will be back soon!

Happy Birthday Leanne!

Thirty five years ago today, the world became a better place.  It became filled with more love, compassion, beauty, kindness, and humor.  Today we celebrate you, Leanne!  Happy 35th Birthday!

Josie has a special message, just for you: