Figurin' It Out

I promised big…and this is HUGE…lots a happenin here…go ahead…grab some popcorn and a cold beverage…

Events over the past few days seem to have blurred together like one gigantic masterpiece of a memory…a perfect little Picasso of events.  It was a long weekend that has me forever changed…full of the good stuff, friends.  The perfectly good stuff like jumping in the ocean in February, rubbing elbows with celebrities, meeting senators and congressmen and ultimately making a difference in the lives of people with intellectual disabilities.  Please don’t feel lazy if your weekend didn’t go down like this…trust me…I am spewing a bunch of whews and aaaahs as I sit on my couch because honestly…this was a busy weekend, friends…and if you just sat on your couch all weekend…well, I’m a bit jealous…

So  here we go…

Beach Bound

We began our journey to the beach Friday afternoon.  I love the beach…oh how I love me some beach.  The blue skies kissing the waves as they crash onto the sand, the salt-air that smells divine {yet sends my hair into frizzy-frenzy}, the sounds of the seagulls squawking…as if to say thank you…as they swoop down grabbing fries dropped from the hands of babies.  And the food…oh I love the food of Rehoboth Beach…Nicolas, Thrashers, Dos Locos…you all had me at hello…and while as we drove the thermometer kept reminding me of the chill outside, my mind was in another state.  In my mind, I was headed to the beach…the warm, sunshiney, beautiful beach.  And as I exited the car?  A wake up call.  It is February in Delaware, after all.  So as the frigid 37 degree temperature smacked me in the face with a little bit of reality, some drops of rain and a touch of salt air…I was reminded that we were at the beach for the Polar Bear Plunge festivities.  While I worked a bit with registration, it hardly felt like work.  Being around hundreds of families of people with intellectual disabilities is a bit like being at summer camp.  It feels awkward at times, it feels natural at times and it feels beyond wonderful at times…and in the end you realize you were right where you were meant to be. 

Cake Off

Anyone a fan of the Cake Boss?  How about The Next Great Bakers?  If you answered yes then I have a special treat for you…a little slice of cake, if you will….

Another day of “work” greeted me with the task of capturing images of the Cake-Off.  I love being behind the lens and reality TV…so this could never be considered “work”.  The Cake-Off was a cake decorating challenge to commemorate Special Olympics of Delaware’s 20^th Anniversary Polar Bear Plunge.  For the event, contestants from the Next Great Baker…Corina Elgart, Dana Herbert, Jay Qualls, Johanna Lyons, and Kendra Jordan competed in two teams to decorate cakes.  The convention center was transformed into something out of an awards show with a “red carpet photo wall”, a sound system and lights.  Sugar, flour, fondant, icing, cakes, cereal bars and ridiculous amounts of talent {and personality} oozed from this event…and I was the lucky one with the media pass…seriously…I’m a lucky girl!  

I ate it all up…well…not the cake, just the fun…that would be a lotta cake to eat up!  I’d have fun trying, though…just sayin'…

The bakers took questions from the audience…like “who was your favorite person on the show”, “how do you like your new found fame”…and my personal favorite “do you know what Spread the Word to End the Word means”?  And none did…but all were so receptive…tweeting and facebooking the message.  The message for people to stop using the R-word.  A beautiful conversation of awareness and acceptance…and the difference each and everyone of us can make.  The bakers also took on a challenge to plunge!  While most had early flights out and couldn’t make the actual plunge the following day, they vowed to plunge that night if that room of people could raise $500….20 minutes later…done.  The clock ticked down the hours…the minutes…the seconds…10-9-8-7-6-5-4-3-2-1…and with that the competition ended and we were left with two amazing cakes and even more incredible memories…

 

And the winner was this amazing cake…made by Dana, Corina and Kendra…

And how does one waste time waiting?  By taking a Kayla exercise class, of course.  Not at all optional…as she points you down and calls you out and directs your every move.  But don’t worry…there’s a “great job” praise involved after her “point your toes like this” and “grab your legs like this”.  The best part?  Corina was totally all for it…and Kayla was lovin' the attention!

 

And with that, the bakers were off to plunge…we made our way onto the beach in the dark and pouring rain…with a few towels, several dozen spectators, and my camera in tow. 

They may not admit it…but they had heaps of fun on our cold sands of Delaware…and I had an even better time watching it all unfold.  

If only my camera could have focused more on them and less on the rain that was falling…{please excuse the wet pictures}

Then onto the fun stuff…thanks to two wonderful in-laws, the hubby and I were able to escape for a little “us” time…some dinner at Dos Locos…followed by drinks…

just a few ridiculously oversized 24 ounce margaritas and some karaoke with my new friends…the bakers…and for those of you that watched the show…every single one of these people {while different in personality} are the nicest, most down to earth and fun people you’d ever wanna spend a Saturday night with…

and even better…become friends with!  After leaving Dos Locos and slithering our way through the uncomfortably warm and sweaty Purple Parrot, our evening came to a close…

The Plunge

The Polar Bear Plunge…oh I had no idea what to expect…and you were far better than I could have ever imagined.  Working with Special Olympics for the past several months, I helped pull together a very small piece of this amazingly large event. It was similar to the sights I so enjoy during the summer months of a Jimmy Buffett tailgate…instead of temperatures in the 90’s with the sound of blenders churning and the smell of grills cookin’…the temperature was a balmy 47 {sounds cold…but much welcomed warmth within this over-the-top cold winter}.  Oh, but the sights were the same…grown men dressed as flamingos, women dressed as polar bears, and penguins, some plastic butts, grass skirts, and signs, and banners and boas, oh my!

  

It was a spectacle…an event that could never truly be explained…but must be experienced.  And while I would have loved to jump into the frigidly frosty 36 degree Atlantic Ocean, it seemed only appropriate that I remain warm and snuggly behind the lens of my camera.  To capture the joy and the shock on the faces of the masses as they ran, skipped, leaped, and crawled into the water.  It was a sacrifice that I was willing to make!  Ok…truth be told…there was no way anyone was convincing me to jump in that water!  But I was in the minority…over 3,000 people…yes…3,000 people plunged.  

That doesn’t include the hundreds of people that decided to remain spectators.  Two of those polar bears {that weren't chicken like I was} were Rick and Kayla...she was beyond excited to go in the ocean!  Everyone said the sand was the worse part...the sand, cold enough to bite your toes, was not warm and welcoming…but the people were…chanting, cheering, hugging…it was an amazingly warm event despite the frigid temperatures.  Warm with spirit…with love…with kindness…with generosity…but the most warmth was the warmth I felt in my heart when I was approached by a high school student.  I stood there on the frozen sands as she told me that Kayla has made an impact in her life.  She heard me speak.  She listened to my words about Kayla and her friends with intellectual disabilities.  And while she has been very active working with Project UNIFY, she felt compelled to write her college entrance essay on Kayla.

And while I maintained composure on the outside…my heart was crying the most beautifully magnificent happy tears ever…because let’s face it…had I really cried, the tears might have frozen to my cheeks.  I was crying on the inside with pride.  At age four, Kayla is making a difference.  She is changing the minds of many.  She is changing the future for so many of her friends that have Down syndrome.  And while she isn’t doing it alone {there are so many Mommy’s and their babies...and grown up babies that are making a difference}…I am just honored to be a part of this journey.  Kayla is so loved and adored...by family and friends...especially her Daddy.  There is nothing quite like the love between this Daddy and his daughter... 

She is loved by her buddy from last year, Courtney {and Chris}, 

by her new friend Maddie, 

and Miss Southern Delaware and Miss Rehoboth Beach {aka princesses}...oh how she loves princesses.  

And what could be better than being a part of this journey…and this event?  Being a small part of raising $550,000 for any amazing charity.  Nothing but good stuff all around, friends.

And for this...

I have no words...

Intermission time…need some more popcorn?  Maybe some chocolate?  Another beverage…go ahead…

{Not So} Superbowl

Football is usually a big deal in this family…actually…a really big deal.  Specifically Rick’s favorite team and third love…me, then Kayla, then the Philadelphia Eagles.  At least I think it’s in that order…although on game day I’m never quite sure!  But I have to apologize to Super Bowl XLV…this year you weren’t the highlight of our weekend.  With the events just passed and the events upcoming, Super Bowl seemed more like a little speed bump to our final destination.  While we watched the game and laughed at a few commercials {they just aren’t what they used to be}…we were eager to begin our travels to Washington DC the following day.

Buddy Walk on Washington

Monday brought travels to DC, a little bit of education, a banquet dinner and some wonderful conversations with new and old friends.  So glad you were there, Linda…it was so good to see you!  

The next morning the sun slowly began to peek through our curtains.  Eventually creating a beautiful glow in dark our hotel room…and with that our alarm clock {aka Kayla} notified us with her beautifully chipper voice that it was “Eight o’clock…time to wake up”!  And she was right…except for the 8:00 part…it was actually 7:00…but what’s an extra hour of sleep?

This was a big day, friends.  Monumental.  The kind of day that you look back on with pride and excitement for the changes you are making.  And it started with a bang…well…more of an explosion.  To quote another Mom that witnessed us cleaning the explosion {as we were attempting to blame it on Kayla}…“no chocolate milk on game day”…lesson learned.  We are not sure how but somehow Kayla, perched beautifully in her stroller, spilled her chocolate milk all over Rick’s white Polo dress shirt {which he was wearing} and his suit jacket that was folded over the stroller handle.  

This was after we cleaned it a little {and if you can imagine, the jacket got the worst of it}...

It bypassed Kayla.  It bypassed her coat.  It bypassed my coat…and disasterously covered Rick.  Now…let me say this…had this happened to me there would have been a few expletives, elevated blood pressure, some stomping, blaming…ok…and maybe a few tears…but not Rick.  He was calm, cool, and collected and together we handled the situation well.  With a bottle of seltzer and a towel we removed most of the disaster…and added a wet outfit to a frigid day.  Oh…and that mom that entitled our mistake “no chocolate milk on game day” also raved over Kayla’s abilities.  I say this all the time…and I truly mean it…all children with Down syndrome are gifts.  Each with a different ability, a different gift to share…none of them fitting into one little mold...none of them being exactly the same...and my Kayla’s gift is a social one.  

Kayla’s speech is amazing and she therefore feels comfortable having conversations with adults…but this mom made me feel special…and fortunate…and blessed.  Don’t get me wrong...I know I am but it’s nice to hear it from a mom that has worked with and seen hundreds of children with Down syndrome and comments that she has never seen a child as comfortable in conversation and so full of knowledge as Kayla.  I am not saying this to toot a horn or pat my back…simply to say that if my day ended here…it would have been a good day.  A day where I felt fulfilled.  Fulfilled in knowing other people see how truly amazing Kayla is.

So onto our adventures…

We took on the hill…Capitol Hill…and they don’t call it a hill for nothing…and we know because we walked up it, back down, back up, back down…and well, you get the point.  

We weren’t walking like we do at a typical Buddy Walk…adorned with boas and signs and tiaras...today we walked to offices to meet with our State representatives.  We rubbed elbows with some senators and congressmen…and passed along our message about important legislation that can directly affect Kayla and all of her friends that have an intellectual disability and are on Medicaid.  The message?  Sign onto the ABLE Act.  Achieving a Better Life Experience.  The basic…trying not to be so boring low down on the act is this…currently people with intellectual disabilities that are also on Medicaid cannot own more than $2,000 in assets unless that money is in something called a special needs trust…taxed at the highest rate…expensive to start…and only good in the state in which it is established.  An all around horrible disadvantage for a population of people that are trying their best to be productive members of society…but why should they if society is working against them?  Kayla can’t get savings bonds  or money from friends or family for birthdays or holidays without having to immediately spend it.  If Kayla were old enough, she couldn’t work very many hours a week without losing her Medicaid.  And why?  For typical kids, we can save for their future…and they can grow up, go to college, start a career, earn a salary, and collect benefits.  The fix?  An ABLE account {just like a 401k or 529 where your money grows tax-free}.  Allowing people with intellectual disabilities to save more, work more, gain more pride in their abilities within their jobs…no…make that careers…and still keep their Medicaid benefits.  We also had other requests…but the ABLE Act was the big one.

And while it was Rick and I delivering the message, it was Kayla that made the biggest impact.  With her warm smile, her sparkly shoes and her sunny personality…she stole their political hearts.  As we entered our first meeting with Sheila from Senator Carper’s office, Kayla was asked “Kayla why are you here today?”…her response?  A straight faced, sitting straight up in a way-oversized leather chair, arms folded on the table response “let’s figure it out”.  

Seriously?  I don’t know where she gets it…but it was hilarious!  And when she got the opportunity to take a picture with the Senator, she placed her arm around him like they were old pals…

And here are Rick and Kayla practicing their poses before the Senator came out for a picture...

Two reasons I love my life...my husband who isn't afraid to act like a fool playing with Kayla {even in a Senators office}...and the little four-year-old who adores him because of it...

We then had the honor of meeting Congresswoman Kathy McMorris-Rogers of Washington state.  She is the co-sponsor of some of this important legislation and the proud mommy of a three-year-old son with Down syndrome. 

And then onto Congressman John Carney…who apparently attended the Polar Bear Plunge.  Through conversation with him we discovered that he knows Michael McNesby {a local 50 year old man with Down syndrome...and local Sinatra impersonator}...small world…and he was an extremely warm and nice man...

So how did Kayla win the hearts of each and every important politician she met?  With a valentine.  Kayla gave each of them a valentine that she signed all by herself.  Nothing says remember me like a card with her picture on it, signed with hugs and kisses…and I have no doubt that they are all remembering her today.

We finished the day with a brisk walk to the White House for a very quick, very cold, very windy photo op 

and then made our way down to the National Museum of American History…where we took in some deep history from our nation.

Most historic to Kayla?  Dumbo, of course. 

While we took the Metro when we could, 

we enjoyed taking in some amazing sights of the city and soaked up some history of our great country.  

The architecture...the grand buildings with their stately columns...

and thoughts of the people that started it all.  I couldn’t help but wonder as we walked…if only our founding fathers could see us now.  Would they be proud?  So much has changed…yet stayed the same.  I know I am proud…and happy…and thankful…and fulfilled.  And when I have days that aren’t as busy and bright as today {and yes…I have some of those days, too}, I will look back, reflect and realize I am right where I belong.  I am loved, in love, and give love…I do what I can, struggle with things I cannot…balancing and juggling each day of my journey.  Some days I may be juggling all of the balls up in the air, some days they are all falling or resting on the ground...but today I am fulfilled.  Today Kayla took over Washington in a straight out of Legally Blonde...Elle Woods struttin' her stuff kinda way {in a totally fabulous pink suit}...can't you just hear the music...It's the perfect day.  Tomorrow's gonna come to soon.  I could stay forever as I am.  On this perfect day...as if to announce to the nation...look out for me...Kayla for President in 2040...hey, anything's possible if you believe...

And while yesterday we took on Capitol Hill, 

today we get back to life as usual…with piles of laundry that will take days {but can wait until tomorrow}...with crayons and coloring books and princess dresses and tutus strewn throughout my floor...with an empty refrigerator {unless you count a bag of carrots,  a few apples, some limp lettuce and a molded cucumber as full}...This is my life...and my life is great...and perfect...because just as Kayla requested, we're figurin' it out.

Ahhhhh…now time to relax…good night, friends.