Monday, February 28, 2011


Lots a happenin' here...Saturday Rick and I attended Imagine the PossABILITIES a conference that focused on the abilities of four amazing self-advocates.
Karen Gaffney, Brad Hennefer, David Eagen and Sujeet Dusai...All four of these people have gifts that I could only dream of. That most of us could only dream of. So when I think for a moment that Kayla may not be able to do something...or question the future...and our journey...I will think back to this day. Within one day I learned the most powerful life lesson...never allow an obstacle to become a barrier. Never allow an obstacle to become a barrier...powerful words...powerful meaning. We all have obstacles in our lives. We all have challenges. As the mom of a child with Down syndrome, this lesson will stay with me everyday. I will never let anyone tell me that Kayla can't do something...because we will find a way for her to do anything and everything that she wants to do. There will be no barriers in this barriers in our journey.

The presenters, all self advocates, delivered their powerful messages to a crowd of parents at Citizens Bank Park...
...home of the Philadelphia Phillies...Rick was in heaven! How does one leave a conference feeling like an underachiever? People often focus on things people with Down syndrome can't do. These people, their parents, their advocates, their teachers and their friends never focused on what can't be done...they focused on what can be done.

Can you swim the width of Lake Tahoe? From San Fransisco around Alcatraz and back? The English Channel in a relay? Karen Gaffney can.

Karen is a young woman with Down syndrome. She had numerous hip surgeries and walks with a limp...but she doesn't focus on's just an observation that one can make...and she jokingly advised us "don't worry, I swim much faster than I can walk"...Read more about Karen here.

Can you play 7 instruments? Saxophone, Violin, and Clarinet, just to name a few. Sujeet Dusai can.

Sujeet is a young man with Down syndrome. He has traveled around the world sharing his amazing talents with dignitaries, world leaders and actors. I witnessed his amazing musical talents...and was truly inspired.

Have you ever sunk a 3 pointer as a member of a Varsity basketball team? Brad Hennefer has.

Brad is a young man with Down syndrome. He sunk 3 pointers as a Varsity basketball player, a part of the team. He was valued, honored and was just another teammate. He was just Brad...or B-Rad, as they called him. Brad was the only person with Down syndrome to play two Varsity sports for Cherry Hill High School. While Brad loved basketball, he is even more skilled in golf. The Hennefer family started the Golf For Life program, teaching children with Down syndrome how to golf. Learn more here.

Have you ever dreamed of loving your career? Wished you had more self confidence? Wished you could focus on the positive? David Eagen does everyday of his life.
He works...full time...and loves what he does. He loves living and loves himself...this guy has amazing self confidence. He exudes self confidence that I wish I had.

Four people. Four amazing journeys. Four individuals. Living with Down syndrome.

Each of these four amazing people had dreams. They followed their dreams with passion and desire and pure heart. Did they have obstacles? Absolutely...but they never allowed those obstacles to become barriers.

I was fortunate to be able to end my weekend photographing 5 beautiful kiddos {3 families}. Thank you, Carolyn and Wick, for opening your home to me. I so enjoyed capturing images of beautiful Emerson one year later. Here are a few moments that I captured through my lens...

Murphy, the dog, made his way into the family picture...he is family, after all.

Note to self: A Wii controller makes an unwilling 2 year old smile.
And so my weekend left me feeling, an underachiever. I can't swim the English Channel...I can't play one single instrument...I can't dribble a basketball {forget about a 3-pointer}...feeling like an underachiever because of four people with Down syndrome. Imagine that. Four people that most would say can't do what we can. Four people that have "disabilities". Four people living their best lives. Living and loving their perfect journey.

Feeling inspired and filled with hope. For Kayla. For us. For our journey as a family. Knowing that anything is possible with love, support and encouragement. Believing that obstacles are just that...obstacles. They are only barriers if we don't seek out alternative ways to achieving our goal. Feeling live life without barriers...

Thursday, February 24, 2011


9…The number of days Kayla has missed school {in a row}.
288…The number of hours Kayla has been sick.
1…The number of times she had an accident in her pants {and all over the floor}.
32…The number of seconds my meltdown over her accident lasted.

I am not perfect…strive to be…but admit I am far from it.  The hours I have spent giving Kayla medicine, wiping away goopy and crusty boogies, giving her breathing treatments, calming her while she is gasping for air, and checking on her throughout the nighttime are many…but I wouldn’t trade that time with her.  So while I reached my Mommy capacity of 17,280 minutes {but who’s counting} spent at home with her for nearly two weeks, I will admit that my ends were beginning to fray and I was slowly losing my mind.

As the remaining patience left in my body slowly oozed out, Kayla looked at me and said “potty” with eyes that bore through me as if they were saying yup…I already went potty…right here…in my pants…and on the carpet.  Normally she says “I have to go potty” in a nonchalant way…usually matter of fact and makes her way to the potty.  This time was different.  This was an all out freeze, only speaking one word in concentration because anything more would open complete flood-gates…and I saw a stream of wetness trickle down her pajama bottoms.  As I jumped to my feet, I scooped her up in one arm and tossed her onto the potty, pajama bottoms still on {but at least she was over the potty}.  And I lost it.  My face felt flush, my heart was pounding.  Standing outside of my own body I heard myself yelling things like “you know better than this” and “Mommy is very sad”…and while I am not proud of my meltdown…it happened and I immediately felt sad that I made her sad.  She sat on the potty, eyes down, tears rolling down her cheeks.  With that first tear, my heart broke.  How could I yell?  How could I get upset with her?  She isn’t feeling well, is on antibiotics, is lacking sleep, clearly isn’t herself…and I was immediately filled with guilt.  Mommy guilt.  I wrapped my arms around her, hugging her, telling her that I was sorry, using big words like frustrated and overwhelmed and exhausted…knowing that she probably doesn’t understand what those words mean because well, she’s only four...but she knew I was sorry for getting upset because accidents happen.

Feeling guilty I immediately wanted to buy her a new toy or ice cream or candy…thank goodness she’s sick or we woulda been in the car in a New York minute…and I would have been broke!  Instead we went back to cutting our strips and making our links.

A little OT hidden within a fun creative activity.  And so there we were, just my girl and I crafting.  She was feverishly cutting strips of multi-colored paper, textured paper, patterned paper…we had big plans.  
We were going to decorate our banister…all Springy…with lots and lots and lots of links.  As we cut and laughed and talked about where we were going to hang our creation, I heard from my friend, Kristi.  Her nephew, a young, handsome, intelligent, vibrant high school star swimmer went into cardiac arrest over the weekend and is in the ICU.  All of a sudden…just like that…a life hangs by a thread.  And I imagined parents clutching to hope…declaring their “why me, why us, why our son?” with tears and grief and broken hearts…holding their breath…reliving memories and praying…and with this…with this thought…with this moment brought…perspective.  Clear perspective.  Life is short.  Does peeing in your pants and on the carpet really matter at the end of the day?  Does yelling do any good?  Does anything other than life and living and loving really matter at the end of the day?  At the end of your life?  I needed that reality check.  To live more today.  To live more right now.  To love more right now.  Today. 

And so we did.  We decorated.  

We played Candyland.  She cheated a bit.  We went with it. 

{I love that she wanted her baby to watch...not play...just watch her play's the little things}

And tonight…as she was hugging me goodnight out of nowhere she whispered “tighter, Mommy”.  Tighter…she wanted me to hug her tighter.  And I did.  Perspective, my friends…perspective. 

{Praying for the Wagner & Burris families tonight.  I can’t even begin to imagine the pain of losing a child.  God gained an angel tonight.  Rest in peace, Ryan.}

Monday, February 21, 2011

2" Vertical

Move over Michael Jordan…there’s a new player in town.  Ok, so maybe a very lame, very outdated analogy but truth be told, I don’t follow basketball and he’s the only player I could think of with amazing “hang time” skills.  Anyway, my girl has skills…she can jump…

and each time she jumps I hold my breath...waiting for her to land safely...knowing one bad move could end her streak of bravery.

But she loves to jump…and she is {finally} good at it...although apparently she is ahead of the game as Rick has confessed he couldn't jump until he was five years old.

For as long as I can remember Kayla has been an observer…always cautious…always taking her time to ensure she doesn’t get hurt {trust me, for a Mommy…a very welcomed thing}…and now she is a jumper.
She’s actually been jumping for a few months now but I finally captured it through my lens…thanks to one 70 degree day, blue chalk, a hopscotch game and our driveway.

Legs together, legs apart…didn’t matter…she jumped and jumped and jumped…loving every minute of it!

After at least 15 minutes of steady jumping we sat to decorate the driveway with letters and shapes and lines…and deep professions of love...because I do love this girl...with everything that I am...

Her little open mouth, squinty-eyed, nose scrunched laugh and squeal...gets me every time!  Happy...she just makes me happy...
We then decorated ourselves…accidentally, of course…my girl would never get messy on purpose!

Thanks to one beautiful day and 2 pieces of sidewalk chalk, we had some much needed outdoor fun.  I love the outdoors and I love the way the sun makes her eyes sparkle…
{disregard the crustiness and blue chalk all over her face}

some days blue, some days green…always with some yellow-gold glitter…always with a beautiful, happy sparkle.  More jumping to do, friends...

Thursday, February 17, 2011

Confessions of a Sick Day

Kayla has been plagued by sickness this week. Riddled with fever and croup…two rosy, chapped cheeks…one red, runny nose…difficulty breathing…and sleepless nights…

And while I could focus on how I haven’t showered in two days because Kayla doesn’t want me too far out of her sight…or how I’m still in my grey-flannel pajama bottoms and black t-shirt from last night because well, they’re comfy…or how my house looks like an atomic bomb hit it with craftasticness...I choose to focus on this…

My girl is funny.  Even through her sickness…incredibly funny and completely cute.  Today she is teetering between wanting me to hold her 24-7 {trust me…only because she is sick} and pushing me away to do things on her own…like this for example…

Kayla’s sweet voice woke me this morning…telling me she ate an apple for breakfast…but it didn’t taste very good.  Kayla loves to wake up around 6am and raid the fruit and vegetable drawer in the refrigerator {wouldn’t be my first option…I’d likely go for the cookies or candy}.  I thought perhaps her taste buds were affected by her cold.  Entering the kitchen, expecting to find a half-eaten granny smith apple on the counter, I found this…
Notice the little nibbles...

A green bell pepper…that would explain it not tasting very good…and I smiled.  So lucky I get to enjoy so many smiles each day with her.

Another smile for my day...Kayla dressed herself this morning.  Usually when we are going to school I assist in the process but it usually begins with a fabulous hair accessory {that she chooses} and building the outfit around that choice.  Today she chose to keep her comfy green pajamas as the bottom layer, a white tank top over that, a black and pink floral {inside out} dress on top of the white tank top and a very fancy jewel and bow design shirt to top it all off.  To complete the outfit?  A very well matched pair of striped leggings and her silver-sparkly, crystal covered Stewart Weitzman shoes. 

What goes best with her interpretation of style?  Her bubbly “how do I look” as she exits her bedroom. The funniest part of this ensemble is it isn’t horrible…although I am not quite sure why she decided on four shirts today…maybe she was cold.  The best part was {other than the inside-out layer #3 of shirts}, her entire outfit was put on right side up, tags where they belong in the back…so we can just assume that the inside-out black floral dress was a fashion statement rather than a mistake.  One benefit to four shirts is I have been able to peel one off at a time as she messes up the one on top…and maybe she planned that, too!  She’s just too much…

Inspired by her fun outfit of choice, today we did crafts…
Kayla has become obsessed {and I do mean obsessed} with scissors.  Cutting at the pace of a Nascar driver she quickly chomps through paper like she is burning rubber in the #1 car.

Why is this so impressive?  Why do I care?  Well, truth be told, I love crafts…I am slightly obsessed with crafts and Kayla used to care less about scissors and crafts…but I have learned this…She doesn’t like doing things unless she is good at them…unless she has perfected the skill…a little flaw she inherited from yours truly.  She has always sought perfection…as a baby she would sit in her crib and try sounding out new words.  When she greets a new street curb, she takes to it cautiously until she feels successful.  And so for years she has practiced here and there with scissors…at home, at school, with her OT…in small doses…a few minutes here and there and has finally perfected the skill of cutting.  She loves cutting paper strips and shapes, declaring what each is.  “Look, Mommy…a triangle”… “Look, Mommy…a oval”…and each shape is exactly what she declares…

While she has been out of school sick all week, I have had her working…practicing writing her name…to get it just right…just perfect.
And while it may seem daunting, to her it is fun.  She loves writing her name.  She takes pride in it.  And she loves writing it over and over and over again in the other room so there is that “ta-da” moment when she is done.  She loves the ta-da moment and I oblige with claps and cheers and hugs…and she eats it all up!

And for those crafts…those thousands of crafts…little tiny odds and ends…they all need their place…and I have a great solution… empty Crystal Light containers…filled with beads and crayons.

Perfectly sized to take with you…durable…unlike the baggies that usually rip, crushing crayons into millions of pieces at the bottom of my purse.  And while I do enjoy a designer-couture look to the inside of my purse, I much prefer the all-one-color-of-black-no-crushed-crackers-or-crayons-pre-Kayla-look better.  If you have great ideas, please share…I’m always looking for crafty storage ideas!

So today we started with one fabulous outfit and we are ending with another…
this fashion statement we are naming "Super Kayla".  She left the room saying “I want to dance…gotta go get my scarf"…as if her scarf was an essential part of her legs and arms moving in a musical rhythm…as if the two went together like bread and butter…peanut butter and jelly…cookies and milk…and now we have dancing and scarves…all thanks to Kayla.  A few minutes later I hear singing from the living room “Suuuuu-per Kayla… Suuuuu-per Kayla… Suuuuu-per Kayla… Suuuuu-per Kayla”…repeated just a few dozen times.  As I entered the room I became witness to this…

Super Kayla sporting her Minnie Mouse beach towel cape, super-power Mommy gloves and of course, her pink scarf…for dancing, of course.  Never mind the stuff all over the floor and stairs {I did mention Kayla has been home sick all week from school, right...well...that's the result of a Mommy too tired to continue cleaning up after a creatively messy Kayla}.

Go ahead and dance…but don’t forget your scarf {oh...and don't worry, I'll be showered by the next post}...

Monday, February 14, 2011

Carpe Diem

We all say it.  We all know what it means…but how many of us truly live by the mantra seize the day?  A few recent events have unfolded that have me thinking…do I seize each day or do I put off until tomorrow what could be done today?  Recently it’s been the latter.

Today was going to be a post of love and roses and valentines and the fun fluffy holiday stuff…the kinda stuff I live for.  I mean, I was married on Valentine’s Day, after all…
{picture by Clair Pruett}
And while today I focused on love, today was far different than planned.  I had planned to make a perfect gift for Rick {I can’t give the details because, well…I still want to make it}…I had planned to make an amazing dinner…I had planned to have the house all clean…and well, you get the point…I had planned to do a lot of things that just didn’t get done.  If I had made the gift when I thought of it, gone grocery shopping when I planned and cleaned as I went along instead of allowing little messes to become our current state of tornadoness {is that a word?}…well…lesson learned.  Everything took a back seat to something far more important.  Kayla.  Kayla has been sick since Friday night.  Really sick, actually.  The scary having difficulty breathing kinda sick.  The eyes running, red cheeks, red nose, snuffly, chest congestion kinda sick.  I have never in her 4 years and 9 months seen her this sick...{and she still attempted to smile through her misery}...

And my world stood still.  She clung to me and I clung to her.

Eight years ago today I stood at the altar at St. Elizabeth’s and pledged my love to the most amazing man.  I pledged forever.  And while I stood there smiling a smile that was so wide it made my cheeks hurt, I never would have imagined that “we”...the two of us…would become “we”…the three of us.  That I would someday love someone other than Rick so completely with all that I am.  And so while we {Rick and I} had plans for our Anniversary, our plans can wait…Kayla cannot.  Still sick, still struggling to breathe, we spent the night in.  Still perfect {except for her awful sickness}.  Tonight Daddy brought home dinner and dessert and cards and gifts and we celebrated…

{Jenny...I still love and use the Tiffany candle holders you gave us for our wedding...xoxo}

Today when it was just her and I, it was hard to get her to smile…but tonight…tonight with her Daddy by her side, she smiled…and smiled…and smiled {still with a yucky icky sickness…but smiled nonetheless}.  

And Mommy?  Well Mommy smiled just to see her smile…my heart is happy when she smiles...and she smiles everyday.  Oh...and I smiled for my presents!!!  I know I gave Rick the “you better never ever...I do mean never get me anything electronic ever for our Anniversary...ever" speech {you know…no blenders, toasters, treadmills, or anything of that sort}…but an iPhone...that falls under a much different category…and while others may argue, it is totally more romantic than roses or chocolate covered strawberries!

Thanks, honey.  And thank you, Kayla for my beautiful Pandora purse charm…it reminds me of you and how much you love your purses {all 17 of them…but who’s counting...}.

So while today was not the day I had planned to perfection in my mind, it was perfect.  You can’t control the things that happen to you but you can control how you react to them…so with this in mind…tonight I will hold Kayla a little tighter, I will love Rick a little bit more, and I will celebrate my life…perfect just the way it is.

And while I am celebrating, I am also mourning the loss of a great man.  Mr. Nolan, you and your family are an inspiration to Rick and I.  You have raised an absolutely beautiful and intelligent young woman.  I am so glad that I had the opportunity to chat with you at the Polar Bear Plunge Cake-Off last week {and discuss how we were both too chicken to jump in the chilly waters}…and even more honored that you compared Kayla {and her bows} to your Elizabeth when she was younger.  You will be missed by our family and everyone in the special needs community.  Thank you for all that you did for the DSA of Delaware and Special Olympics.  Rest in Peace, Mr. Nolan.

Just one more reason to seize the day.  Live, laugh and love, friends.
And to are my forever Valentine.  Happy 8 years...I love you!

Sunday, February 13, 2011

Daddy's Little Princess

Barely holding back her excitement, Kayla walked up the stairs as quickly as her tiny feet would move.  She scurried to her closet, sliding it open with a bang…searching for the perfect dress.  As I showed her a few options she declared that she was going to pick it out, all by herself.  Nearly 10 minutes passed {and several Cinderella, Sleeping Beauty and sundresses} before Kayla made the perfect selection… her perfectly poofy hot pink tutu dress…then onto her jewelry armoire.  Because what dress would be complete without the perfect accessories?  Pulling open each drawer, reviewing the contents, then back closed.  A few dozen times and it was settled…to complete her outfit she chose a fancy pink pearl necklace, a plastic pink heart ring for her left hand, pink plastic butterfly ring for her right, and sparkly pink tiara to adorn her beautiful little head…she is Daddy’s Little Princess, after all.

All dressed up, she was ready for her date with Daddy.  Her valentine.  She was beyond eager for Daddy to come home from work to take her out.  She waited upstairs until Daddy came home to make her way down the stairs.  This time her trip downstairs was more purposeful and slow…looking through each spindle ensuring that our eyes were only on her.  With each of our ooohs and aaahs, her grin grew larger, with her rising cheeks hiding her sparkling blueish-green eyes.  Halfway down she stopped, looked down at her feet, pressed her face against the spindles and squeezing her sweet little cherub cheeks as far through as they would go…and said “Daddy, look”…then stood up straight, pointing her toe like a perfect ballerina…“glass slippers…just like Cin-rella”.  

Together they posed for a few pictures before they were off for their date... 

Daddy allowed Kayla to choose their date location.  Any guesses?  If you said McDonald’s you were right.  Daddy decided to take her to the McDonald’s at the mall…a little more fancy for his princess.  Before dinner they did a little shopping.  She strolled through Build A Bear, but wanted nothing...she explored the Lego store, but isn't much of a Lego what did she pick out to buy?  A Fancy Nancy valentine book, of course.  Nothing but fanciness for my girl.

Walking through the door she melted my heart…“Mommy…close you eyes...I have surprise for you...{never asking me to move my hands from my eyes she continued} I had the best time…I a lucky {reaching into a plastic bag}, I got you a book you read to me”…she then turned to Rick and said “thank you, Daddy, happy val-a-times day”.

Nothing can top that…it’s the little things that make my life perfect…like a fancy dress, McDonald’s dinner, a $5 book and incredible love between a Daddy and his daughter that turned an ordinary night into an extraordinarily perfect one.  Hope you are enjoying a few moments of perfection this weekend, friends.