Halloween Photo Shoot

This year's Halloween photo shoot offered the same challenge/blunders/bloopers/mischief/attitude that were included in all of our infamous holiday photos shoots that preceded it (If you're curious, click Here, Here, Here, Here or Here...).  It requires a lot of patience/tolerance/willpower/stubbornness/dedication to end up with a shot like this: 

 

As in many a past photo shoot, the girls had to be convinced to stop obsessing over their footwear:

(Notice Lillian has been relieved of her "cauldron duties" - it was truly the only way to get Merryn to stay in one place for more than 2 seconds.)

 

In the spirit of Halloween, we were joined by a spooky visitor!

 

Suddenly, a residual gust of wind from Hurricane Sandy nearly blew the "talent" away!

 

As if that ghosts and hurricanes didn't offer enough annoyance, Josie's luscious gray locks overwhelmed everything and everyone...

 

Merryn threw up the old talk-to-the-hand and nearly stormed off the set!



 

Then the most high-maintenance of the models decided she'd had enough before the director could even yell "It's a wrap!"



And with that, we were finished.

 

Wishing everyone a very Happy Halloween!

We interrupt your regularly scheduled programming...

...to extend a big "Welcome home!" to Dad, who spent the last eight days in India on a business trip.  Granted, we're trying to stay focused on Down Syndrome Awareness Month, and this really has nothing to do with Down syndrome, but it's a pretty big deal in our house. 

 

As soon as Dad walked in, both girls ran straight into his arms!

Because Love Machine (their dearly departed souvenir from Dad's last trip to India) was such a huge hit, the girls couldn't wait to see what Dad brought them this time:

 Dad was apologetic about the lack of Indian authenticity, but his shopping options were limited.  This reminds me of the time he brought me wine from Germany - it was actually from Italy but the label was in German :-)  After a little Googling, it appears as though these Vtech toys are not available in the US and they differ from our other toys because they sport a British accent - spot on! 

 

Not like the girls care where the toys are from.  They only care about the turf tug-o-war!



Merryn lost this round.  Her response: turn to mom sporting her best "That's not fair!" face and adamantly exclaim "Mo!" while signing "more."

 She rallied and went back for round two...

 Her perserverence paid off and she emerged victorious! 

Just look at that smirk!

By this point, Dad was able to free toy #2 from its packaging and tranquility was restored.

 Later in the day, Mom had a parenting gaffe that is undoubtedly the first of many: Josie held up the Dad figurine from her doll house, pointed between his legs, and said "Lady bits!" 

 

Yes, that's what yours truly taught her to call her anatomy.  *Cringe!* 

 

My response: "No, that's a boy.  He doesn't have 'lady bits,' he has...um...boy parts!"  She promptly repeated this new terminology and I was immediately filled with doubt that I'm leading her down the wrong path here. 

Deflated pigtails brought to you by her sister's newfound affinity for hair-pulling

 

When I appealed to my beloved husband for advice, he shrugged and said "You go ahead and make these decisions.  I'm here to support you!"  Gee thanks.  After texting a few parent friends, it seems as though the concensus is that Josie should learn the clinical terms for those body parts.  *Cringe!*  The problem is that Josie is so into labeling!  People come into our home and take off their shoes and she immediately points to their feet and says "Socks!" It's nothing for her to point to their eyes and say "Glasses!"  Girlfriend even tries to lift up shirts to locate people's belly buttons!  The last thing I need is for her to point to peoples' crotches and say...ugh!  I can't even type it! 

 

This is one of those moments that Travis likes to call "Amatuer Hour".  Kind of like when you don't clamp the tube before opening the port even though you've done it hundreds of times in the past...or for those that don't understand G tube anaologies, it's like leaving the opened bag of Goldfish crackers too close to the edge of the table.  What do you think is going to happen?!  Amatuer Hour!

 

Granted, parenting is an learning journey; a journey of trial by fire, trial and error, throwing-it-against-the-wall-and-seeing-if-it-sticks...and every other cliche for "I-have-no- idea-what-I'm-doing-but-I'll-figure-it-out-as-I-go".  Perhaps today was a failure.  There's always tomorrow!  Maybe my anatomy instruction will gain proficiency by then!

Bright futures await young people with Down syndrome

While it's hard to resist the charm of an adorable tot with Down syndrome,

much of the feedback we receive about the blog conveys appreciation for getting a glimpse into what life is like as an adult with Down syndrome.

In honor of Down Syndrome Awareness Month, here are a couple of stories we think you would also enjoy.  The first is about a Patrick Thibodeau.  Patrick is a senior in high school who has Down syndrome.  The Today Show featured a touching piece about the night he got to live his basketball dreams:

http://www.msnbc.msn.com/id/21134540/vp/29030653#29030653

 

Bryann Burgess is an adult with Down syndrome who attends college and lives on campus.  This story gives us a glimpse into her job as an assistant teacher.  Bryann is so polished and articulate, it is apparent that the sky is the limit for this young lady:

http://www.wltx.com/news/article/121995/2/Teacher-Born-With-Down-Syndrome-Breaks-Sterotypes

 

As a parent of a little one with Down syndrome, it is incredibly inspirational to see stories like this because they really open my eyes to the possibilities to come.  There are so many wonderful opportunities out there for individuals with special needs to utilize their talents and follow their dreams.  The promise of a vibrant future awaits!

Survey reveals first-hand perspective of those living with Down syndrome

Down syndrome has been a part of my life since the day I was born.  As much as this makes me feel like somewhat of an expert, at other times it makes me feel completely ill-equipped to explain what the "Down syndrome experience" is like to an outsider.  I've never been an outsider; only an insider. 

Me & my big sister, Leanne

 

Having never experienced Down syndrome from a perspective of shock and adjustment, as a new parent whose child has just received the diagnosis, I try to imagine what the questions and concerns would be.  Perhaps you would wonder how taxing this would be upon you as a parent.  Perhaps you would wonder what kind of an impact it would have upon the child's siblings.  And perhaps you would wonder about the quality of life facing the individual with Down syndrome. 

 

Well, last year a survey was conducted by a physician at the Children's Hospital of Boston and it addresses these three perspectives.

My family on my wedding day.  Leanne was my Maid of Honor (or "Best Woman" as she preferred to call it)

 

 

 

You can read through the findings in full entirety here but the bottom line is that the "Down syndrome experience" is an overwhelmingly positive one for everyone involved - ESPECIALLY for the individuals with Down syndrome!  I challenge you to find any survey of any population of typically developing individuals that reports such astounding happiness and confidence results. 

 

And as for the small percentages of parents and siblings that expressed embarrassment and regret, well, I wonder what that percentage would be if parents and siblings were polled about typically developing family members.  I bet the propensity for negative feelings would be even greater.  There are always small segments of the population that will express discontent at any circumstance;  You know, the "glass half full/poor me/life's not fair" people that are impossible to please. 

So to the outsiders who associate the term "Down syndrome" with uncertainty and fear, here's what us insiders want you to know:  It's a FORTUNATE few whose lives are graced by Down syndrome.  This survey affirmed my perspective that these fortunate few emerge happier, prouder, and more enlightened and we are ultimately grateful for this blessing.

We're More Alike Than Different

In honor of Down Syndrome Awareness Month, I'd like to share this clip with you.  It inspires me and makes me burst with pride on behalf of all of my chromosomally enhanced friends.  I hope it does the same for you.  At the very least, I bet it makes you smile:

Look at the potential: college, employment, marriage, pets!  I love how Mark, Moira, Christopher, and Christi exude radiance and fulfillment when they talk about their lives.

Welcome to my world



Play Hard

As I was getting ready to tape up our "gently loved" copy of Goodnight Moon, it occurred to me that it's really easy to tell the favored possessions around here - they're the ones that are battered, beaten, and in a obvious state of disrepair...

 Chicka Chicka Boom Boom is a classic that our girls cherish so much that it's down to a five pages with electrical tape on the spine...

 The Poke-A-Dot! series was discovered by Mama Hop and these books have been treasured to the point of pure annihilation...

 ...yet I can't bring myself to throw them away because the girls still play with the dismembered fragments daily.

 Good old Monica, Josie's Brazilian BFF, is now sporting a peg leg - a clear sign of Josie's steadfast adoration:

And how can we forget Love Machine, a hot pink dinosaur that sang and danced his way into our hearts until the day he suffered an untimely demise (in case you missed this unspeakable tragedy, click here).  If you're really quiet you can still hear the faint echo of his Motown melody accompanied by his  joyful gyration that was all too fleeting.  Let's bow our heads and have a moment of silence... 

Goodnight, Goodnight Moon

Cherished remembrance, Chicka Chicka Boom Boom

Profound sympathies, Poke-A-Dot

Mourning memories of mobility, Monica

Rest in Peace, Love Machine

 

 

Down syndrome; a first-hand perspective

In honor of Down Syndrome Awareness Month...

 

One of the most heartwarming sights for me is when I see a family with a child with Down syndrome and a younger sibling in tow.  I interpret that to mean that even though these people gave birth to a child who is perceived as defective among certain fragments of society, they were not deterred from having another baby.  Because they know, first hand, what I know, first hand; that a life with Down syndrome is a rich, purposeful,and  abundant life worth living. 

I have recently encountered three testimonies to this very circumstance that have warmed my heart and inspired me to share. All three of these women are people that I perceive as friends, even though I've only met one of them in person. (Isn't that the beauty of this blogosphere network we've formed?)
 

Patti, over at A Perfect Lily is mother to 10 (that's right, I said TEN) children - the youngest of which has Down syndrome. She recently announced that she is pregnant with her 11th child and she writes:
 

Did you know that my odds for having a baby with Down syndrome at age 45 (when I deliver I'll be 45) are 1 in 30?? And having had a child with Down syndrome, they go up a percentage.

Meaning I am extremely "at risk" for having a baby with Down syndrome.

Guess what?

It doesn't bother me a bit!!!

Nicole, over at The Reese Report, has two little girls - the youngest of which has Down syndrome.  She has also recently announced that she's pregnant and she writes:

 

Yes, technically my chances of having another baby with Ds are higher. The genetic counselor quoted me "1 out of 100" odds. I haven't told Ben [Nicole's husband] yet - he will be devastated our chances are so low. 

And then there's my favorite blogger and dear friend, Courtney, over at Pudge & Biggie, who has two children with Down syndrome (both of whom were adopted - adoptions inspired by a family member with Down syndrome and years of teaching children with special needs) and is pregnant with her third.  She has written several things that have touched my heart in a profound way:

 

Our biggest hope is for a healthy, perfectly-put-together baby. We feel like gluttons praying for it, since we already have two that fit that description right now, but we're shooting the moon and hoping for a third.

 

AND

 

We wanted to start our family with a child who had Down syndrome and couldn't guarantee we'd cook one up, so we outsourced for LC...[This pregnancy is] our first squib via the dinner and a movie route, and we have no idea how we'll react if it turns out to be typically developing. But, I guess every kid arrives with its own learning curve, and we'll find a way to love it in spite of itself. 

 

AND

 

As a mother of TWO children with Down syndrome...who was only pregnant for 10 weeks...I was urged by THREE separate medical professionals at THREE separate medical appointments to have the early test that would indicate whether the baby I carried showed indicators for Down syndrome.

My response was an easy one. "Well, if the kid has Down syndrome, then it just proves it was able to accurately read an address on its way here."

That's right - those of us who have been fortunate enough to have first-hand experience with Down syndrome have been so positively impacted that we would do it again.  Heck, my existence here today is proof that my parents were willing to do it again.  That my friends, is the best advertisement for the merit of life with Down syndrome that you can get.  Just take it from those of us who are on the inside!

One more thing...

Today we celebrate a wonderful husband and father. We are so blessed to have him in our lives. 

Happy Birthday Travis!  We love you more than you'll ever know!



Aunt Leanne and the week of playful pandemonium

*Note: Phase three of the Chicago trip is being postponed for a future blog post. Thanks for understanding.

 

Please accept our sincere apologies for our absence from the blogosphere.  The past week was an absolute blur!  We were so busy that there was very little time leftover for sleeping, let alone blogging.  However, time is always made for photography.  So many pictures were taken last week that collages seem like the most efficient means of sharing.

 

As always, Leanne was an enormous help.  She really makes the day-to-day process of feeding, clothing, and entertaining the girls a lot easier and much more fun!

They even started a little band.  We've got ourselves a music lovin' family here!

Skills and abilities alert: Standing and singing!!!

 Of course Aunt Leanne also got a hearty dose of the chaotic reality of wrangling two little ones.  One morning it took her nearly a half hour to dress Merryn because every time Leanne would get the shirt over that child's head, Merryn would promptly tear it off and run away.  I couldn't help but laugh - especially when Leanne emerged victorious with a fully-clothed baby - her onesie was snapped OVER her pants, but we'll still give that round to Leanne.

Even though bedtime is the wind-down time of day, Leanne's nieces still have enough residual energy left to keep things interesting.  I love the look on Leanne's face in these photos - especially the one in the middle where the other two look like they're having a blast and Leanne looks like a deer in the headlights.  It's a wonder she maintains her composure!

 Our week with Leanne ended with a little road trip to deliver her back home to Mama Hop, who missed her dearly.  Mama Hop has been wanting us to bring the grand kids to visit for awhile but I warned her that as hard as it is to manage two little ones in our own environment, it's nearly impossible to do it in someone else's home - especially one that isn't set up for small children.  She assured me that she didn't mind having two little ones around and that she'd minimized all the opportunities for them to cause trouble.  I think she underestimated Merryn.  Our little cherub managed to break a picture frame, pull the phone off the hook, invade and scatter my mom's financial files, and break a potted plant that was a gift from my late grandma - all in less than 24 hours!  Oh the joy of grandchildren!  Somehow Mama Hop didn't seem to mind.

We truly enjoyed our week with Aunt Leanne and we hope we can do it again sometime - and hopefully at a slower pace with more opportunities to blog.  There were a couple of fun things that happened that will be disclosed on a later date so watch for those...

 

In the meantime, we hope to return to our regularly scheduled Down Syndrome Awareness programming soon!

Windy City Weekend - Part 2

So another cool thing about the Windy City is that it is home to many fantastic people that we love, so while we were there, we took advantage of the opportunity to visit some of them. 

 

Leanne and I have two first cousins (that's it - count 'em - 1, 2) which makes it that much more special when they expand our family by welcoming a beautiful blue-eyed stunner by the name of Emily:

 See?  I told you she was lovely!  Even Merryn was in awe of that precious face...or maybe it was the head full of luscious hair she was in awe of.  Hopefully Miss Em shared some hair growth tips with Miss M .

 Here is sweet Emily proudly showing off her wonderful parents - Jen & Steve.  You would be hard-pressed to find kinder people.  We are so blessed to call them family.

 And we cannot fail to mention her oh-so-handsome albiet difficult-to-photograph big brother, Elias.  That adorable little man is on the go!

 One family member who was a little more inclined to stop and pose for a picture is the domesticated bunny who happily hops around the house.  How cool is that?! 

Here's someone else who is always willing to stop and pose!

 

We also had the good fortune of dining with our dear friend, Erin and her beau, Mark. 

 Erin has been my friend since first grade, so it was a great priviledge to be able to reunite with her and to introduce her to our children.  Leanne was equally excited to see her - especially since Erin was kind enough to bring her a pair of Chicago Cubs footies!  We all know how much Leanne adores footies!

Photo courtesy of Instagram

 

After dinner, Travis & Leanne were kind enough to take care of the girls so Erin and I could catch up.

 

Being able to reunite with loved ones is just another perk about our trip to Chicago.  More on that to come...

 

Aunt Leanne has been patiently waiting for her turn to blog, so without further ado...

 

hi evrbody

i went to the chigo

 

say my cosin

steve and jenny

apment

 

new baby memily

ealias

good

baby

did not crying

saw erirn

lthnks for the froorries

iam

like him wear

today

love leanne