Happy 3rd Birthday, Josie!

 

Today we celebrate three incredible years with Miss Josie JoJo!  In choosing pictures for our annual slide show, it became apparent that this was a year filled with smiles, swinging, and plenty of attitude (aka "THE FACE").  The song selected is one of Josie's favorite dance tunes and it's the perfect song to highlight the joy that Josie has brought to our lives.

 

Happy Birthday, Josie.  We love you beyond words!

Happy 3rd Birthday Josie

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What we can learn from individuals with special needs

We all have our moments where we like to complain that we're tired, frustrated, and stressed out.  I'm certainly guilty of this myself.  In today's fast-paced society, it's easy to get caught up in the assumed urgency of our own concerns.  This inevitably leads to feeling defeated because we can't accomplish everything we want to accomplish as quickly as we'd like to.

 

That's when I need to take a step back and realize what Josie teaches me.  In Josie's world, that fast-paced sense of urgency does not exist.  It cannot exist.  Josie requires more time to attain skills and accomplish tasks that we take for granted.

 Josie's disability does not mean that she can't do things that other people do, it just means that it's going to take her longer to get there.

 And those things that come naturally to those of us without disabilities, are things that Josie has to put forth a great deal of time and energy to learn.

 It's a slow process; one that requires an enormous amount of work on her part.

 But in time, she'll get there.

Seeing her work this hard, for this long, makes me incredibly proud, extremely grateful, and deeply humbled. The fortitude I've witnessed from this child truly highlights how much I take for granted. And when I take a step back and reflect on her journey, I realize how much I can learn from her.

 

Let's add it up: an unwavering perseverance + a positive attitude in the face of challenges that the rest of us could never relate to +  the composure to avoid toxic comparisons + a grace to ignore the inequities = pure admiration

 

I know God purposefully creates people with disabilities.  These people have an ability to impart extraordinary wisdom upon the rest of us.  And if we take away a fraction of what these individuals have to offer, we are undeniably better for it.

Adults With Down Syndrome: An Inspiring Story

Here at CCE, posts about Leanne and other adults with Down syndrome are among the most popular posts.  I get a lot of feedback from parents of young children with Down syndrome who like to see how much promise the future holds for their children when they become adults.

Meet Tim Harris.  He is an adult with Down syndrome and he owns a restaurant:

He shared his story on The Today Show earlier this week:

Click HERE

Here's another fun video about Mr. Harris and his restaurant:

Click HERE

Thank you, Tim.  You have inspired us with your ambition, energy, eloquence, and unbeatable attitude! 

World Down Syndrome Day: Our Down Syndrome Story

Happy World Down Syndrome Day!  Today is a day in which we raise awareness about Trisomy 21 (otherwise known as Down syndrome).  March 21st (3/21) is the perfect day to recognize individuals with Down syndrome because Trisomy 21 means that these individuals have 3 chromosomes on the 21st pair instead of 2, like those of us without Down syndrome.  If you want to know more about it, click HERE.

But enough with the technical stuff.  Today is the day we celebrate my big sister, Leanne, whose impact on my life was so profound that she inspired the adoption of our daughter, Josie.

And we loved Josie so much that she inspired us to grow our family even more.

When Merryn was born, Josie became an awesome big sister...

...just like Leanne has become an awesome aunt.

And we're all better for impact Down syndrome has had on our lives.

Merryn could probably live without the excessively enthusiastic displays of affection...

 (She looks like she's really enjoying this moment, doesn't she?)

...but she tolerates it because she adores her big sister, just like I adore mine.

Today we celebrate individuals with Down syndrome and the incredible contributions they make to this world. 

 

 

Leanne reads, writes, has a job, volunteers, competes in Special Olympics and she enjoys an active social life.  She is smart, capable, hilarious, hard-working, and extremely kind.  She is loved by more people than we could ever count!

 

 

Like her Aunt Leanne, Josie is also full of attributes that enrich the lives of all who know her.  She is bright, loving, joyful, and eager to learn new things.  She will turn 3 next week and she has already shown a very promising capacity to learn, excel, and become independent.  She speaks, sings, dances, knows her letters and numbers, and she is becoming a better walker by the day.



If you've never been fortunate enough to know an individual with Down syndrome, here's the bottom line: People with Down syndrome face developmental delays but they can demonstrate how to handle life's challenges with a better attitude than most.  And at the end of the day, I've never met an individual with Down syndrome who was the least bit focused on his or her own shortcomings.  Individuals with Down syndrome live full, happy, enriching lives and they are a blessing to the rest of us because they have an unparallelled capacity to show us what is truly important in life.

 

 

If you need additional proof, click HERE.

Happy World Down Syndrome Day 2013!

Bye Bye Chicken

* The following post has been composed especially for Patti, at A Perfect Lily, who needed to see this to believe it.

 

Readers who have been with us for some time are very familiar with Josie's beloved companion who is so important in her life, that he probably deserves a spot on the "About Us" page.  "The Chicken in the Closet" has been Josie's treasured sidekick for more than a year now.  No, he's not a gay chicken who hasn't yet come to terms with his orientation.  He's a hard-earned carnival prize that Aunt Leanne won for her beloved niece at the fair over the summer, and then hid in her closet until Christmas.  This gift was far too special to be bestowed haphazardly.  Aunt Leanne strategically concealed this fuzzy yellow fellow within the safe shelter of her bedroom closet and hyped his reveal for months. 

 

(Check out this vintage video clip in which Leanne first announced the impending arrival of the little clucker.  Mom, click HERE.)

 

He finally found his way into Josie's arms on an occasion no less important than the celebration of Christ's birth, and he has been cherished accordingly ever since.

Josie first laid eyes on the chicken - December 2011

 

Josie and the chicken immediately became inseparable.  When Josie is with the chicken, she can't focus on anything else; she doesn't explore her environment, she doesn't play and learn; she simply sits and nuzzles her precious poultry.  In fact, her fondness for the little yellow fellow quickly grew so excessive that it had to be reigned in.  

 Josie is now only allowed access to the chicken during bedtime.  During the day, the chicken must remain in the crib.  Of course there are little exceptions to this rule.  The chicken is allowed to accompany Josie to medical appointments and other scenarios in which she may need additional comfort and support.

But generally speaking, the chicken must stay in the crib.  It's for Josie's own good.  Besides, it gives her a reason to look forward to bedtime.  It's just the getting out of bed that we struggle with.

The video below is a a heavily edited, albeit nearly nine minute compilation of footage from several different mornings.  It's not really intended to have you riveted on the edge of your seat for nine minutes (although the sound of my voice when I increased the speed of the playback is pretty entertaining).  It's just to give you a taste of what it takes to get Josie out of bed every morning:

Yo VIP - Let's Kick It!

Today, Josie wiggled out of one sleeve of her shirt.  Normally, I would fix it and we would go on with our day but today, she gave me an idea. 

 

You wanna rock an 80's look, kid?  Rad!  Dude, that's totally tubular! 

 And then when she requested a dance party, I was like, "Gag me with a spoon!" - Psych!

 

Of course we had a dance party!

 

And it just so happens that Josie's favorite song of the moment is off of a classic album that dropped in 1989.  It has also inspired her new favorite greeting/catchphrase, "Yo VIP - Let's Kick It!" 

Um, yeah.  Anyone who has been around Josie in the past few weeks has been subjected to the greeting, "Yo VIP - let's kick it!" which is probably about the last thing you'd expect to hear from a blond haired, blue-eyed, pink-spectacle-sporting, almost 3 year-old.  Fortunately, the embarrassment quotient is overshadowed by the humor quotient...in most cases.

 

Go ahead and judge me for exposing my kid to this song.  But I will turn around and judge you for depriving your kids of one of the greatest artists to grace this generation.  Vanilla Ice is right up there with MC Hammer, Milli Vanilli, and NKOTB.  Oh please tell me you do not deprive your kids of NKOTB!  We're talking legends, people!

Besides, there's only so much Usher one mom can handle (no offense, Usher)!  She must broaden her horizons at some point.

Like, totally!

Pretty in Pink Photo Shoot

After yesterday's rather solemn blog post, I decided we needed to do something fun and uplifting today.  There's one surefire way to get some entertainment around here and that's staging a good, old fashioned photo shoot.  It's a well established tradition around here where Mom pursues the ever elusive goal of her children cooperating to achieve the perfect Kodak Moment. (For those that aren't aware of the implications of my tireless pictoral pursuits, click HERE, HERE or HERE).

 

Asking the girls to smile always results in blank stares so I asked them to make a "happy face" instead, and this was the response:

 What is that?!

 

The girls demonstrated attention spans equivalent to fruit flies this morning, so I snapped my fingers to attempt to attract their gazes in my direction and I got a couple of imitators:

 How does she make that cool sound with her fingers?

 

You know what happens when you tell Josie that she's smart?  She immediately points to her brain and makes a "click click" sound with her tongue.  Merryn enthusiastically concurs.

 Then it's Merryn's turn to show off her impressive brain and Josie seconds that motion.  Mama Hop taught them this little trick.

 But it wasn't all cute toddler stunts.  There was plenty of this:

 ...and this:

 But it was all worth it to capture this:

And that was exactly what I needed this morning.  Nice work, Ladies.

 

* In case you were wondering, that nasty bruise on Merryn's forehead was the result of her slamming her head against the stairs in a particularly dramatic temper tantrum.  There's no shortage of drama around here.  Girlfriend deserves an Academy Award for her performances.  Combine her temper with her daily daredevil stunts, and she's perpetually bruised.  If I waited to take photos until she is entirely healed, I'd probably miss her childhood.  #HurricaneMerryn



A miracle in our darkest hour

The other night I received an email from my blogosphere buddy, Patti, from A Perfect Lily, asking me to do a guest blog post about the most agonizing thing I've ever lived through - nearly losing Josie.  The death of a child is the most excruciating pain one can feel and in August 2010, we were told to prepare ourselves for this experience.

 

My initial reaction was to decline.  I do my best to avoid those terrible memories.  I can't even look at photos of Josie from those days.  I don't think about it, I don't read about it, and I don't talk about it. 

 However, Patti's email explained that the reason she wanted me to share our story was to offer encouragement to another family whose daughter, Emma, has been given a bleak prognosis from doctors.  Patti was an avid blog follower (and more importantly, a devoted prayer warrior) during that time and she thought our experience could offer hope to Emma's family and to other families as well.

 So, I reluctantly agreed and I let the words pour out stream of consciousness style.  And as much as I dreaded confronting those memories, the process was extremely cathartic for me.  It helped remind me of the overwhelming amount of love, support, hope, and faith that surrounded us during that time.

 And even though we stood at the door step of our own personal hell, we ultimately became the recipient of one of God's miracles and for that, we are eternally grateful.

I smiled when I found a passage I wrote when I informed blog readers just how dismal Josie's prognosis had become:

 

We remain hopeful as we wait. We pray that each day we are greeted with the subtle improvement Josie demonstrated today. I anxiously await the day I can blog to tell you that she is off the ventilator...and that she's out of the PICU...and that she gets to go home...and comes back to punch Dr. Doom & Gloom in the face (Travis' idea, not mine). With all the love, support, and prayers that surround our sweet baby, we know she will recover. We've got BIG plans for this kiddo!

 

Please take a moment to join us in prayer for Baby Emma and her family.

 

To read my contribution to Patti's "Grief, Hope, and Miracles" series,

 

click HERE.

 

 

 



Spread the word to end the r-word

March 6th is the annual day of awareness to eliminate the use of the word "Retard(ed)" from our vocabularies.

You may wonder how the word "Retarded" went from a medical diagnosis to a derogatory term and www.r-word.org offers a clear explanation:

 

When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.

 

That last sentence is exactly why we are asking you to join us in our support of the "Spread the word to end the word" campaign. 

 

Do it for Leanne. 

 

Do it for Josie.

 

Feel free to help us "Spread the word" by pinning the graphic above to your Pinterest page.  Simply click on the "Pin It" button below and help us promote this message of respect:

The things good parents do

You know those things you don't want to do but you do them anyway because it will make your kids happy?  Well, Sunday was the perfect example of that for Travis and I.  While the Realtor was hosting an open house at our home, we packed up and headed to our local children's museum.  It seemed like a more enriching way to spend time rather than wandering around the mall.  These are the types of things good parents do, right?  We had no idea what we were in for.

 

The two most distinctive characteristics that greeted us like a ton of bricks as soon as we entered the children's museum are among our biggest pet peeves:

 

Crowds - Travis

Noise - Me

 

Don't get me wrong - we adore our children.  However, being surrounded by swarms of other people's children, running, climbing, bouncing off the walls, and screeching at the tops of their hearty little lungs is enough to make me want to lock myself in a bathroom stall and wait out the duration of the museum tour on one of those little potty's that sits six inches off the ground.  But I didn't do that.  I was brave.  Because, once again, these are the types of things that good parents do, right?

 

Disclaimer: If you're reading this, please don't be offended by my reference to other people's children.  I wasn't talking about your children.  Your children are darling angels.  I mean other people's children ;-)

 

Our girls were thrilled as soon as they walked in the door and got little green turtles stamped on their hands.  That was worth the price of admission as far as they were concerned.  You would've thought they were showing off a Rolex they'd just received.

We should have turned around and left at that point, "There you go, girls.  You've seen the children's museum and you got a really cool turtle stamped on your hand.  Wasn't that fun?!"  But being good parents, we stayed.

 

We started off in the music room where we encouraged Josie to play the steel drums.  She immediately mistook the drum stick for a microphone.

That's when Dad stepped in and offered some guidance and before you knew it, the girls were getting their Bob Marley on.

 Next stop: some sort of coloring exhibit where we enthusiastically encouraged Josie to color on the table for a good five minutes before noticing a sign that said "Please do not color on the table.  Use the paper provided."  Oops!  Guess we owe the museum a Magic Eraser or two...

 There was some sort of barn display with life-sized stuffed animals.  Upon close examination, Josie angrily declared "Broken - needs batteries!".  Yep.  Not one of those animals sang.  Josie even turned the goose over and looked for the On/Off switch.  What kind of a museum is this?  We want our money back!

Oh and then there's my extreme germ phobia.  There I was, neuroticmom.com, chasing my kids around with a bottle of Purel in a cold sweat.  But I never anticipated the horror that awaited me at the tooth brushing exhibit.  While I stepped back to try and get a picture of Josie reaping the educational benefits of my good parenting, she took the enormous toothbrush and started brushing her teeth, not the displayed teeth.

 But the girls were having fun.  They spent a lot of time in the kitchen exhibit, which should come as no surprise because anytime you ask Merryn what she wants to do, her response is always the same: "eat!"  So Josie whipped her up some mouth-watering plastic cuisine because she's a good big sister like that.

But despite the noise and the crowds and the germs and the fact that I think my girls were a little too young to actually utilize most of the exhibits, there was a super shiny silver lining...

 My little gross motor grouch walked nearly the entire time!

 We're talking a strange new environment with a bunch of overstimulated hellions threatening to plow her over at every turn and girlfriend persevered on her own two feet!

So witnessing that stellar display of skills and abilities was the absolute best part of the day!  This distorted mirror that makes me look super skinny was a close runner up, though.  Note to self: Figure out where to buy one of these bad boys...

So there you have it.  We came, we saw, we survived, and then we had a beer.  We'd earned it.  And as far as the things that good parents do, we felt good about checking "Children's Museum" off the list.  I'm sure it will seem like a walk in the park compared to the day we have to attempt to recall high school trigonometry skills to help with homework, or worse, have the dreaded "Birds and the bees" talk.  But these are the things good parents do, right?



Aunt Leanne's Exhausting Weekend

 

 

Head Diva In Charge

Early Friday morning, Travis and I flew up to the Arctic Circle (just kidding...kind of) to take care of some new house business and we left Mama Hop and Aunt Leanne in charge of the girls.  After their coronation, it was down to business as usual.

 Once Leanne changed into her robe and got comfy, it was time for the standard, ordinary, run-of-the-mill hug fest between the two most affectionate members of the family. 

 Of course Josie was eager to consume the hearty helping of love, undivided attention, and spoiling that Aunt Leanne always dishes out.

And Merryn was eager to consume a hearty helping of anything that Mama Hop dishes out because it's not every day that she gets cuisine that rivals Rachel Ray, Giada De Laurentiis, and Paula Deen combined!

We are so grateful that Mama Hop and Aunt Leanne were willing to assume all childcare responsibilities so that Travis and I could focus on selecting cabinets, paint, and flooring for our new igloo abode.  It's a luxury to be able to have a childless getaway, and even though we were very anxious to have our girls back in our arms, it gave us great peace of mind to know that they were having a blast back home.  Here are a few more photos that will be familiar to Instagram followers:

According to preliminary reports, the girls improved their grade substantially from the last time Aunt Leanne babysat. Tune in tomorrow for the update straight from the Diva's mouth.