Tuesday, March 22, 2011

Things I Love.


I have been thinking a lot lately about things I love…and how some “things” truly are “things” by definition…my possessions.  You know…the items you would try to run through rooms engulfed with smoke and fire to save should your house catch on fire.  Never had those thoughts?  Oh…maybe that’s just me being my perfectly planned self…Well some of the things on my list are simply “things” I love around me…and others aren’t “things” at all…

My Camera
Of course you all know I love my camera.  I take it with me just about everywhere I go.  Some days I leave it behind on purpose…but those are the days I usually end up saying to myself ‘I wish I had my camera’…so those days are rare.
My old camera was really mad and jealous taking a picture of my new camera.


Candy Jars
I love my apothecary candy jars…given to me by Rick’s grandmother {Mary} and Aunt Kathy.  I love how they add color for each season {yes, I change the candy every holiday}…and how they remind me of two beautiful women.

My Favorite Frame
The saying on this frame makes me cry every time I read it…






































This Cluster
One of my all-time favorite picture of Kayla paired with an oversized jack and marbles.  They are more than just marbles.  These were Rick’s PopPop Pete’s marbles that he enjoyed as a boy, Rick then played with them as a boy and now Kayla gets to enjoy them.  Oh how I love bits of history and memories…and how this playful collection of things makes me smile.

Jewels
I go through phases of jewelry…wearing big chunky costume jewelry to compliment my outfit of the day…or wearing bold silver pieces…or wearing gold…but you will pretty much never catch me without my favorite pieces…my engagement and wedding rings, my Pandora bracelet and my diamond necklace…and each has a story.  My wedding band was my grandmother’s ring.  My grandfather presented it to her on their 40th wedding anniversary when they renewed their vows.  Let me also say that no two people were ever more in love than my grandparents.  I learned more about love from watching them grow old together than I have from anyone else…so when my grandmother passed away, my Mom wanted me to have it, to use for my wedding ring or to use the diamonds.  I knew, being the sentimental fool that I am, that I wanted to keep it just as it was.  It was my MomMom’s ring and it was perfect...and call me silly but I believe that her ring has kept me connected with my grandmother, her love for my grandfather, and blessed me with her beautiful spirit.  Rick had my engagement ring made to match {without me ever knowing}…the combination of the past and the future on my finger brings me so much joy.  The second piece is my Pandora bracelet.  Each charm is special and signifies so many moments in my life.  The last is my diamond necklace.  Rick gave me the journey necklace on a very special Mother’s Day…Kayla turned one on Mother’s Day 2007…a day that I gladly shared with my beautiful baby girl.  The journey necklace to me symbolizes how far we have come, together on this journey…and how much more we still have to discover.
Spring
I love, love, love, love, love {did I mention love???} the Spring!  The warmer temperatures blended with cool breezes and of course, saying goodbye to our drab winter trees.  Not that I don’t love you, drab-leaf-free trees because I do…just when you are snow covered.  So now that it is spring…bring on the budding Maple tree.  My favorite tree in our yard that delights me with each new season…

Kayla’s Art
Kayla is finally getting a creative spirit {much welcomed by her Mommy}…and she loves to color, paint, draw, glue, cut, and glitter…and my heart flitters!  To celebrate her new-found-love of everything art, I added a display to our hallway this weekend.  It’s not yet complete {I have a bigger vision}…but seeing her art hang on our wall makes me smile…
The DFRC Blue-Gold Hand-In-Hand Program
I first learned about this program 16 years ago when I was a senior in high school {I know…I’ve just dated myself}…when I was a cheerleader for the Blue-Gold All-Star football game and I had a Buddy.  Her name was Jennifer and she was the sweetest, kindest 15 year-old-girl you have ever met.  I became her friend and we hung out together…going to movies, McDonald’s, and the mall.  I enjoyed spending time with Jennifer and it was easy for me to see past her disability as she became more than my Buddy, she became my friend.  Who would have guessed 15 years after that experience, my own daughter would be a Buddy.  Last year was Kayla’s first year participating in the program and it was amazing…and this year has started off the same.  Kayla was paired with an Ambassador from Middletown High School, Amanda.  Kayla adores Amanda and she adores Kayla right back.  Amanda came to our house to hang out with Kayla…playing hide and seek, tea parties {in Kayla’s cardboard house}, hopscotch and so much more…



Together we attended the Hand-in-Hand Party…the kick-off event for this year.  I can tell you that nothing would melt your heart more than attending this event…seeing hundreds of children paired with their high school participants…seeing their smiling faces and hearing their contagious laughter…it’s pure magic.  Lots more events coming up so you’ll be seeing and hearing a lot more about this amazing program but to read more about the DFRC and this program, click here.

Down syndrome
I know a lot of you will question this love.  How could I possible love something that stamps that label of “special needs” on my daughter…but my love for Down syndrome is deep and true.  It is a love I never knew I needed in my life…but oh how I needed it.  You see, without Down syndrome, there would be no Kayla.  My life certainly would not be the same without Kayla…and for that I love Down syndrome.  But beyond the diagnosis, beyond my child being deemed by society as “not perfect”, it has caused me to reflect and search and see that people with Down syndrome are so much more than a diagnosis.  So much more than a “disability” they wear on their faces.  They are sons and daughters, sisters and brothers, grandchildren, aunts and uncles, cousins and friends.  They are people…just like you and me.  They can love and be loved.  They can be friends.  They can learn.  They can work.  They…we…are just people…all walking this earth together…taking steps of this beautiful journey together.  I can tell you that Kayla has taught me more in her four years, 10 months and 8 days of life than I will ever be able to teach her in her lifetime.  She has taught me the true meaning of love…unconditional love.  Love that I see every time she looks into my eyes.  Love I feel every time she wraps her arms around me.  Love that I hear through her beautiful voice, laughter and squeals of delight.  Pure unconditional love.  Without Down syndrome, I would not have met some of the most amazing Moms I have ever met in my life.  Moms that I am lucky to now call my friends.  Moms sharing their journeys of hope, strength and determination for their children.  Down syndrome has brought us more good than you could imagine.  The way perfect strangers watched as we danced with Kayla at a wedding and approached us just to say that we are an amazing family and are so blessed to have each other…or the way that Cinderella fell in love with Kayla at the Princess dinner and told us when she would be working the next day so we could visit her at the Magic Kingdom…and as soon as Kayla entered the room, they all recognized her based on Cinderella’s description…calling her Princess Kayla and telling her they heard all about her dinner with Cinderella and Prince Charming…do you know the magic that was sparked in her on that special day?  It was magic that oozed out of me in the form of happy tears.  And while these were just two separate events...amazing things happen everyday because of Kayla.  I have gone from being known as Amy to being known as Kayla's Mommy...and I am more than proud.
Kayla and I wore our Princess Kayla's Court Buddy Walk shirts today...to celebrate Down syndrome!


Family and Friends
Of course life would not be life without family and friends…and I love all of my family and friends near and far…knowing that you can count on someone when you need them and they can count on you is such a great feeling in life.  And while I know that I can count on my friends, I have always worried about Kayla making friends...typical friends.  I love that she has friends.  And while she is learning to be more social and speaking up, she has friends.  Friends that she talks about and friends that she plays with.  Today after school we went to the Children’s museum and Kayla played with her friend, Kaia from school and her brother, Lincoln…and she loved every minute of her time with her friends.  And yes…although Kaia towers over Kayla they are the same age {Kayla is actually about 5 months older...Lincoln is only 2}.
While we were at the museum, Kayla decided to release some of her creative energy in the art studio...this painting started as 2 vertical lines. 












I suggested she could make a line going across and make it an H.  She decided to put the line a bit lower and declared {in a huff...and trust me if her hands weren't dirty I am sure it would have been with her hands on her hips} “No, Mommy…look…I made a 4.  Just like me…I am four years old”.  I have to tell you…every day she does something to amaze me.  Things that make me step back and realize that she may have Down syndrome but she is as typical of a four year old as they come…full of knowledge and curiosity mixed with a bit of sassiness…and I wouldn’t want her any other way!

And last but not least on my list of things I love...I love these two…

To put it simply, they make my life complete.

So today I celebrate my life.  I celebrate Down syndrome on this the 21st day of March {3.21 – World Down Syndrome Awareness Day} because it is a part of my life. 

And while it is simply a diagnosis and does not define Kayla there have been moments that I thought it would.  There have been dark hours when I cried and kicked and screamed...when I wanted to blow up balloons, hang the streamers and throw myself a gigantic pity party so I could beg for a world without Down syndrome.  I did all of that because I did not understand. I did not see the pure beauty, pure joy and pure perfection that comes with having a child with Down syndrome.  She is perfection.  Her friends with Down syndrome are perfect.  And each and every one of us blessed to be loved by someone with Down syndrome know there is no greater love in this world.  Tonight I am celebrating all of the amazing children and adults I have met with Down syndrome...like Victoria, Matt, Brendan, JJ, Aliza, Addison, Nicholas, Tommy, Franki, Grace, Nella, Elizabeth, John Paul, Kennedie, Charlotte, River, Natalie, Rebecca, Harleigh, David, Nevaeh...and the countless others I didn't mention here but are forever in my heart.  Tonight I celebrate all of you and tonight I am thankful for Kayla, my husband, my life…and all the things I love.  And while some of the "things" I love are possessions, the things I love most aren't things at all.  What are some of the things you love, friends?

Oh...and before you go...look at my girl...she can peddle all by herself {all because her feet can touch the peddles...hooray}...that makes her proud...and me happy...just one more thing I love...being happy...





this kind of happy...

Thursday, March 17, 2011

To Trap A Leprechaun

Cue the green shamrocks, sparkly glitter, rainbows, pots of gold and leprechauns for it's St. Patrick's Day!  Don't let the 'ski' at the end of my last name fool you...I got the luck o'the Irish in me!

While I don't really remember much about St. Patrick's Day when I was four years old {ok...I don't really remember anything}...this day to four year olds is a really big deal!  It's not just a day to wear green...it's a day to try to trap a leprechaun...and it's serious business!

Kayla's class has been working on leprechaun traps all week.  Legend has it if you catch the leprechaun you get to keep his gold.  So they painted and glued and glittered and rainbowed and lucky-charmed some boxes...and I was lucky enough to be able to work in Kayla's class and capture the fun through my lens.  Each day this week Liam the Leprechaun has been causing mischief in the classroom...knocking over pencils and emptying the bookshelf onto the floor...leaving notes, glitter and footprints behind.

The kids set the trap and........
Nothing!  No leprechaun!  But they did get some of his gold...which the kids liked just as much.

And so they did the jig...

Just look at my girls form...she's a natural...but I am her Mom so I might be a wee bit prejudice {said in my deepest, thickest, best Irish brogue}.

And we made Irish Stew (ham, cabbage and potatoes)

And we baked some green cookies {good thing they were just for us...the sugar finger-licking might not be preferred by all cookie eaters}...and maybe it's just me but this batch was extra yummy...and she was totally adorable as she exclaimed "mmm, sweet"...

And tonight as the sun began to set and peek through our curtains making designs on our carpeted floors, my little genius announced "look, Mommy...a floor piano"...

...and proceeded to make sweet piano sounds as she tip-toed across the "keys".  Somedays I just have to stop, take a breath and soak her all up...every last bit of her creative and beautiful mind.  Somedays I catch myself going back to that dark place of unknown when she was born and when those words were spoken...the diagnosis of Down syndrome...and my world stopped.  I didn't know how much her little mind would be able to understand...and today?  Today I can tell you she gets it.  She gets it all.  She soaks everything up like a sponge and I am in awe and so glad to be soaking up these beautifully bright days with her.

This day was divine and perfect and pure amazingness...my little leprechaun totally gets holidays this year and she loves the magic of these fun days.  And today as she announced over and over "you can't catch me"...just like Liam the Leprechaun...I thought to myself...you know what?  She's right...I can't catch her...I can't keep up with her amazingly curious and wonderful mind...and for that I am so thankful...so very thankful and blessed.  Speaking of blessings...I wanted to share my favorite Irish blessing with you...May the saddest day of your future be no worse than the happiest day of your past.  Hoping your St. Patrick's Day was as happy as mine...

Monday, March 14, 2011

Gluttony

Mr. Webster has two definitions for gluttony...
1.  excess in eating or drinking
2.  greedy or excessive indulgence

Well, Mr. Webster, this weekend I was gluttonous.  I make not excuses.  I ate a lot and I excessively indulged in family fun time.  And so while gluttony may be one of the seven deadly sins, I don't apologize for it...as I enjoyed every second of it.  While I am trying to eat healthy, sometimes you just have to disregard the diet...because cheeseburgers really are good for your soul...a great cure for stirred emotions.  Emotions in turmoil for my Alpha Xi big sis, Pam, whose father just passed away and emotions that have been stirred up further pushing my desire to make a difference for people with special needs.  So with turmoil, with emotions, comes the desire for food....really good bad-for-you food...and oh how I feel better!

Rick and I enjoyed a nice dinner together.  We enjoyed adult time discussing adult things without the presence of crayons, baby dolls, and a cute little 3 foot 2 inch blond hair blue eyed beauty.  And while having her present fills me with so much joy, it is great to go back to just "us" every once in a while.  To enjoy each other.  When it was time to order, I was good...ordering just lettuce wraps.

Rick indulged in wings and cheesesteak egg rolls.

What are cheesesteak egg rolls you ask?  Well...let me tell you...if you have ever wondered how to make a cheesesteak even better than it already is, the answer is this...deep fry it!  That's right...my life is forever changed after tasting that perfection!  And what could make my husband even more happy than something fried?  Beer...

During our dinner we discussed life and love and dreams and plans and had fun...just the two of us...a perfect date night.

Not to leave out our little pigtailed cutie, we took her out for a little celebration.  Where would a family of parrotheads celebrate together?  Cheeseburger in Paradise, of course.  With the summer tour tickets going on sale this week, we decided to indulge in a little pre-game food...






































Bacon cheeseburger and sweet potato chips...perfection...

Rick's idea of humor...

A tiki bar...oh how I was tempted...trust me...I was envisioning blue skies, aqua water, white sands, swaying palms, a hammock, a frozen concoction in my hand, swaying to the sounds of a calypso band...or if I had my ultimate dream, Jimmy Buffett would be serenading me....ahhh...a girl can dream...but I digress...

And while my idea of perfection is a frozen concoction...Kayla's idea of perfection is coloring {check out that pincer grasp...oh yeah}, baby dolls and ice cream...and what could make ice cream better but chocolate sauce, oreos and rainbow sprinkles....

Sometimes you just have to climb under the booth to capture the cutest picture of the day...

Seriously...I don't think I could love these two and my life anymore than I do...

And oh how she loves to dance...especially if she sees a stage.  She's never met a stage she didn't like.  It's as if every stage was made for her...in her mind, at least.  Like God put that stage right there in the middle of the restaurant just for her to dance on...just don't show her the signs for Thursday night Karaoke or we could have a serious problem on our hands...

After our lunch outing we excessively indulged in playing with Kayla...if only I could bottle her ridiculously adorable squealing laugh as she plays kickball.  It's contagious, I tell you.  It's one of those sounds that you wish you could hear all day long because you would never get tired of hearing it.  It's the sound of pure joy.  Pure happiness.  And seriously...the gold puffer vest with gold Chuck Taylors...it doesn't get much cuter...

And sidewalk chalk...oh how we love some sidewalk chalk...just $1 worth of egg shaped sidewalk chalk can make a girl {ok...and her Mommy} seriously happy...

While I adore how seriously cute she is posing next to her name that I drew, I love even more how she wanted to write her name all by herself...or to quote Kayla "I do it myself, Mommy"...as she grabbed her favorite color chalk {do I even need to tell you it's pink?}...and she began writing and saying each letter at a time.  Even more adorable was her excitement when she stood up, looked down at what she had written and declared "K-A-Y-L-A...spells Kayla"!  Oh how I love her...
And when Daddy needed a little helper...she was {of course} right by his side...

So this weekend I was gluttonous....I ate in excess, had fun in excess, lived in excess and loved in excess...and Mr. Webster I make no excuses for living gluttonously because it was pure perfection...