The Test

Today the test is available.  For those of you that have babies with Down syndrome, you know the test I am referring to...MaterniT21.  This prenatal test is able to detect fetal DNA in the mother's blood as early as 10 weeks into pregnancy.  Ten weeks.  Before you have likely told your neighbor, your best friend, perhaps even your Mom.  Ten weeks.  Before you have really connected with your baby.  Ten weeks.

Why does this concern me?  Because of the way I was told Kayla had Down syndrome...by pointing out what was "wrong" with her.  Because 96% of babies with Down syndrome are aborted.  Because people don't understand Down syndrome...not even the doctors offering the prenatal testing.

Dr. Brian Skotko, an amazing doctor and advocate for individuals with Down syndrome {who also happens to be the brother of a sister that has Downs syndrome}, conducted a study of 3,150 mothers, fathers, brothers, sisters and people with Down syndrome.  Here is just a sample of what he found...

99% of people with Down syndrome said they were happy with their lives

97% of people with Down syndrome liked who they were

99% of parents said they love their child with Down syndrome

97% of brothers/sisters, ages 9-11 said they love their sibling

Here are some of my own statistics...

I love Kayla 100%...every little bit of her...including that extra chromosome

99% of my days are brighter because of Kayla

99% of the time I am proud of her

99% of the time I want to be around her

The other 1%?  Well, she is a five-year-old little girl.  A very typical five-year-old little girl.  Sorry...big girl.  I would definitely be corrected for calling her a little girl if she read this.  The point is, I'd be lying if I said I was proud of her 100% of the time.  Would you be proud of your child for being sassy to a teacher by saying "whatever"???  Probably not.  Or would you be proud of your child for biting her friend on the knee...not so much {and yes, my sweet little Kayla did that apparently because her friend took her stuffed animal}.  So...that's the 1%.

But I'll take that 1% and the other 99%...I'll take it all...just to have my girl.  

So go ahead, doctors, give that test to pregnant women.  But I sure as hell hope you are also giving them information about Down syndrome and connecting them with parents that love their "imperfect" children. The problem is, I know there are thousands of Moms that were met with the diagnosis in the same sad and pathetic way that I was...the "are you sitting down", "are you alone", the "I'm sorry to tell you this"...and my least favorite "let me show you what's WRONG with your child"...To those women that got the diagnosis prenatally and kept their children, I applaud you.  I've said it before but truth be told...I can't honestly tell you that I would not have been one of the 96% of women having an abortion.  Unless you know anything about Down syndrome, it appears to be doom and gloom...even out of the mouths of doctors.

So the problem is this...

If women no longer need to have an invasive amnio to receive this diagnosis, it is far more likely they will find out their child has Down syndrome while pregnant.  It is far more likely that 96% will increase and the number of people with Down syndrome will decrease.

While I never imagined my life as the parent of a child with Down syndrome, I would want it no other way.  Kayla has taught me more in her five short years than I could ever teach another human being.  She has taught me love, compassion, kindness, respect and most importantly, she has taught me that all of us...ALL of us...are humans.  We all are equal.  We all are deserving of nothing less than what we expect out of life...to be happy.

So go ahead...if you are pregnant...take the test...but don't take it to decide whether or not to "keep" your child.  Take it to be more prepared for life as the parent of a child with Down syndrome.  I promise you...it is a life that is more full and rich than you could ever possibly imagine...for I could never imagine my life without her...

   

Thanks for reading and I'd love to hear your thoughts...

The strength of a sisterhood.

My life was rocked this September.  I received a call from Kayla's doctor that her blood work came back positive for both celiac disease and thyroid disease.  I have thyroid disease so I know managing that is no biggie.  The celiac, however...rocking. my. world.  My dad's wife has to follow a gluten free diet and I know just how difficult it is cooking meals and especially eating out.  I slowly processed all of the emotions but the hardest part to accept is the fact that this is just one more thing that makes her different.  Just one more thing that will make her stand out from her peers.  My immediate thought went to school lunches and birthday parties.  While I have to admit taking back the power of packing a healthy lunch will be great, my girl loves to buy.  Everyday she wakes up and asks me what is on the calendar...the school lunch calendar.  She wants time to think over her choices and decide what she will be purchasing that day.  She has the power and she loves it.  These days she is really big into being first, being the leader and having the power...so buying lunch to her is the ultimate.  She gets to make all of the decisions...white milk, chocolate milk or strawberry milk?  Chicken tacos, hot dog or ham and cheese?  I tried to prolong the lunch-buying in the beginning of the school year by telling her she had to memorize her pin number first {knowing most kids didn't know theirs}...well...one day later she had it down...she would walk around telling me her five-digit pin...complete with "enter".  So obviously she was motivated to buy...to have that ultimate power.

As you can imagine, just knowing I will have to take that power away from her breaks my heart.  While I know I can give her choices at home to pack...it's just not the same.  I am pulling away her ability to be the same.  To just be a kid...a typical kid with a choice.  That breaks my heart.

Then, as always, my mind races ahead.  Just like those days five and a half years ago in the days following Kayla's diagnosis of Down syndrome, my mind raced with all of the what-ifs and will-shes?  Like will she ever walk, talk, make friends, drive a car, go to prom, get married, etc., etc., etc....I know...ridiculous to have those thoughts when your child is a newborn...but I had them...and all of you Mommas with babies with special needs know exactly what I mean.  As if any Mom knows if their child will go to prom or get married...but I worried.  As soon as I realized I needed to focus on today, it made everyday much easier to manage...but for me, the type-a planner...that was difficult...very difficult.

So with the celiac diagnosis, my mind immediately raced to birthday parties.  We don't even have any on the calendar, but I worried and started to plan...I don't want my child to be any different so I decided before parties I will take matters into my own hand.  I will talk to the birthday girl or boy's Mom and find out if they will be having cake or cupcakes and what color icing they will have.  Yes...you know exactly what I am thinking...I will then bake the gluten-free version and take it to the party.  So as all of Kayla's friends are getting orange and yellow icing all over their faces, lips and fingers, Kayla will too.

I know I will continue to fight for Kayla to be as "typical" as her peers...and this is just one more speed bump in our journey.  While this diagnosis rocked my world, finding out that she has to be put to sleep to have a scope and biopsy of her small intestines to completely diagnosis her has me scared.  I just can't imagine her little body in an operating room.  While I know the doctors do these tests on a daily basis...they don't do them on my baby, on my girl.  But while this information had me worried, nothing could prepare me for the news I was about to receive...

My sorority sister, Missy, reached out to us, her sisters, on September 23 to let us know she had just been diagnosed with inoperable stage IV oral cancer which had spread to her liver and lungs.  She sent this information in a private message on facebook.  I was sitting in the leather chair of my in-laws living room as I read the words she typed from the screen of my iPhone.  I was immediately paralyzed by fear.  Immediately struck with fear and sadness and tears...uncontrollable tears.  I couldn't breathe.  I couldn't talk.  I was just struck with immense sadness.  Missy is the definition of a sister.  But more importantly, she is the mommy of three beautiful young girls and wife of a loving husband.  I immediately thought what I would do if I received such news.  Knowing  the odds that are stacked against her, Missy is fighting.  She is fighting the fight of her life and I stand behind her, supporting her.

That night as I lay in bed processing the news, I knew I had to do something.  I knew we, as her sisters, had to do something together.  None of us live near her so contributing to her Care Calendar was out of the question.  I immediately reached out to my sorority sisters {some that graduated before Missy was even initiated} and asked for their help.  Within hours we had raised over $500.  Within a few days we raised over $1,000 and within a week we raised over $1,500.  We used that money to purchase $1,500 in Whole Foods gift cards to ensure she and her family are eating healthy during this difficult time.

Along with the gift cards we sent a box of hair accessories for her girls, a framed poem and a card.

There are many that believe joining a sorority is nothing more than "buying friends"...there are many that believe all of the horrible headlines and bad movie plots about sorority sisters...there are many that would discourage their daughters from joining a sorority.  To those I say this...

Memories of my days in college are rich.  Not because of the classes I took or the parties I attended but because of the women whom I chose to call my sisters.  My memories are filled with pride of walking across campus in jeans and stitched letters.  I wore my letters knowing they stood for what I believe in.  They represented a sisterhood of women that were intelligent, strong and caring...who also happened to have a lot of fun together.  Thinking back at college, sure, I learned a lot.  Yes - I earned my degree...but those memories would not be the same without three little Greek words...Alpha Xi Delta...and the hundreds of sisters that made that sorority what it was {and still is} for me.

While I have so much pride in my sisters from my four years as an undergraduate at Old Dominion University, I have never been more proud to be an Alpha Xi Delta.  The strength of this sisterhood will never be broken.  Many of us haven't seen each other in over 12 years, many graduated before Missy was initiated, yet we band together to help a sister.  Pulling a sisterhood of strength to rally behind Missy to let her know we love her, we care about her and we support her.  Missy is strong.  She will fight.  She will beat this cancer.  We already lost one sister, Katie Edwards Benner, a few years ago to a brain tumor.  Missy will fight and she will beat this because two is too many.

Bieber fever

It's cute.  Really cute.  My girl has Bieber fever.  For those of you that don't know what Bieber fever is, I'll assume you live under a rock...but just to clarify, Bieber fever is the description of those that are extremely fond of Jusin Bieber, the singer.

I have to say, though...my girl is already far more advanced than I was at her age.  She actually pays attention to music - the name of the song, the artist and most of all the lyrics and learns them - all of them...not just pieces of the chorus.

I'll take you back a few years to 1982.  I was five.  The singer?  Michael Jackson.  The album?  Thriller.  The song?  Beat It.  Don't laugh.  I don't know why I loved that song but I did.  I rocked a white fringe shirt...yes, I said fringe shirt...and I rocked it...with it's purple plastic beads attached to each fringe and the words Beat It splashed across the front in purple and black glitter.  I thought knew I was cool.  I would sing everywhere I went...in our wood paneled station wagon, our 1970's yellow kitchen, sitting on the shag carpeting of my bedroom...everywhere... "Just beat it, beat it, beat it, beat it"...followed by a made-up, I had no idea what the words were..."no one la la mmmm eated.  Show 'em whose funny, hmmm, hmmm mmm fight"....then right back into "beat it, beat it, beat it, beat it"...over and over and over again.

My girl?  She knows the words to her favorite song "Baby".  So while I must have driven my Mom crazy just singing two words over and over and over again, Kayla's singing is music to my ears.  I love hearing her sing the words to the song {complete with hand motions and hip shaking}...teaching me most of them, to be honest!

While she loves his music, that is not the only reason she has been diagnosed with Bieber fever...
You have to eat, sleep, breathe, think, talk Bieber to be diagnosed...and she has...
In fact, if you ask her what she likes about Justin Bieber she will likely respond "his blond hair".  I guess she already has a "type"...even at just five years old.

There are numerous situations that prove she has the fever...here are just a few...
During school one day, Kayla was paying attention to a friend, Carly.  Her teacher quickly asked her "Kayla...are you be worried about Carly or are you worried about Kayla"?  Her response..."I'm worried about Justin Bieber".

Dressed in her Justin Bieber pajamas for Pajama Day at school, Kayla from the back seat of the car..."Mommy, I get to wear my Justin Bieber pajamas to school today?"...to which I reply "yes you do"...her response?  "How cool is that??????"

For a mom that admittedly doubted if her child would ever be the "same" or be "typical"...It's cool...very cool.

Here is a clip of her singing and dancing along at the Boardwalk Buddy Walk at the Rehoboth Beach bandstand in front of a crowd of hundreds {that blog is still to come...I am way behind}...The little boy in the clip is my future son-in-law, JJ.  As he played with her tutu, Kayla stopped singing and exclaimed "Mommy, JJ likes my skirt" and went right back to singing and dancing.  Hilarious.

While you're watching...go ahead...you know you wanna sing along...

Baby, baby, baby, ooooooh

Like baby, baby, baby, noooooooo

Like baby, baby, baby, oooooooh

Thought you'd always be mine, mine......

Goodnight, Summer.

For most, summer has been over since Labor Day...the official "end of summer".  For me, I have held onto summer with everything I can...and for those of you that know me personally know that I will be rockin' my flip flops well into fall and sometimes if I am lucky into winter.  It just depends on the snow schedule here in Delaware.  I will rock flip flops in 30 degrees...but I draw the line at snow.  So while I do enjoy the change of seasons and love the fall, I hold onto summer tight.  Summers have always been my favorite time of year.  I can do without the 100 degree days but the memories are so sweet.  Swim team practice in frigid waters at the crack of dawn, boating on the Chesapeake Bay...spending my days and nights surrounded by the water...those times are some of my favorite memories as a child.  It's the nostalgia, I suppose, that keeps me clinging to summer.

Knowing what is coming...the cold, dark days...leaves me clinging to these amazing summer memories...

Like spending time on the boardwalk...
{Thank you Maddie and Jamie for taking Kayla on all of the rides!!!}

I love these pictures of her on the very same boats that I probably enjoyed in the 70's...whoa...just dated myself...and scared thinking she was riding on some seriously old rides...

And the games...oh how my girl loves the games...and...of course, winning!

And spending family time at the zoo...

Oh these two...they are my everything...and the way she loves him and he loves her right back...it's pure bliss.  She has him wrapped around her little pinky...and he knows it.  We are two very lucky girls.

And a day at the park...

She just can't possibly make me any more happy...her smile lights up my life.

During these first few weeks of kindergarten there has been a lot of compromising on her "princess" outfits that she just has to wear to kindergarten...has to...as in she might just not make it through the day without a tiara and a fancy gown.  For those days, we compromise on tutus and tank tops ...oh to be five again and get away with looking great regardless of your fashion sense!

I guess the other thing that keeps me clinging to summer is my birthday...that evil reminder that another year has flown by faster than the one before.  And while I do love any reason to celebrate, celebrating another year gone just isn't as exciting as it was as a child.  But nonetheless, we run through the motions and we celebrate.  I no longer celebrate myself, I celebrate my life.  Thankful for the friends and family and love that I have in my life.  I am a very lucky girl.  I woke up to this...

Dozens of notes all over the house...feeling very loved, indeed.

We celebrated this year at Moro...a restaurant in Wilmington.  It is a very contemporary, upscale restaurant...reason number one we shouldn't have taken my Mom.  Look...I love my Mom...she's my best friend...but there are many ways that we are different and one is that she isn't exactly an adventurous eater.  She is more of a meatloaf and potatoes kinda gal.  So...imagine her surprise when she read items such as escargot and foie gras on the menu.  I imagined her ordering just a salad or perhaps just going with a diet coke so you can picture my shock when she suggested we order the Chef's Five Course Taster...kinda blind ordering...trusting the chef will read your mind and pick out exactly what you yourself would have ordered...

Course 1: Buttered fish with popcorn and fennel seeds
Course 2: Jumbo lump crab with melon sauce and salsa
Course 3: Lobster risotto
Course 4: New york strip steak with corn relish
Intermezzo: Pistachio sorbet
Course 5: Assorted desserts


I watched my mom's face as she ate...course 1...epic fail.  Course 2...not much better.   Course 3...well...you get the point.  The bread...well, that made her happy.  It was indeed the most expensive bread she has ever had.  

I will never forget this meal.  Funniest.  Meal.  Ever.  Ever!  Comments like "wow...this is the best course so far...and it is just supposed to cleanse my pallet" and "well, we can always hit up McDonalds drive through on the way home".  She was kidding of course...well...not really!  If the meal was just any other meal it would have never etched itself into my memory the way it has.  Laughter is good.

My Pandora bracelet has a new addition...a princess carriage charm.  My princess picked it out all by herself.  A forever reminder of just how magical the land of Once Upon A Time and Happily Ever After truly is at the age of five...and a little symbol that tells me it's ok to believe that my life is a fairytale...because it is.  My girl drew a picture of me on my birthday card and signed her name.  To me, there could be nothing sweeter in this world.  


Goodnight 33.  Goodnight sand and sunscreen and summer days and nights...goodnight.

Oh...and for those of you wondering...we decided not to cut her hair chin-length.  Instead we are hiding the pieces she chopped off in braids and behind large flowers, feathers and bows.

Mommy Lesson 7,894

So I thought I had dodged the bullet.  You know the bullet that every mom fears...ok...well maybe I am being a tad dramatic...but this was a bullet I feared.  Put a girl, her hair and a pair of safety scissors together and what do you get?  Yup...gasp...a hair cut.

I kinda thought we had passed this moment.  As if my girl loved her hair so much she would never dream of taking a pair of scissors to it.  First let me say that Kayla is an early riser...a ridiculously early riser.  She has always played in her room or in the family room to give me {the caffeine-needing, slow moving Mommy} a little bit of time to get moving.

Imagine my shock as I walked toward the stairs and saw a small chunk of golden-blond hair.  Let me clarify - a small amount of hair that was at least 10 inches long.  I thought it odd but picked it up and walked downstairs.  As I reached the landing {her favorite spot to play near the window with her American Girl dolls} I witness more of the crime scene....more hair.

Eeek.  Ok...I have to admit at this moment I started to panic.  Where were the scissors and where was my child?  Remain calm...remain calm...remain calm...is all that played through my head.  I calmly called for her asking her what she had cut.  Her answer of course was "I don't know".  As she entered my line of sight I gasped.

Chin-length?  Really?  Uh.  I think my heart stopped beating for a moment.  I showed her the hair, smiled and asked if she cut her hair to which she cutely smiled at me.  That smiled shouted guilty...guilty as charged!  In that moment I realized it was just hair.  It would grow back.  Besides...she has always been a trend setter.  For example she started rocking flowers in her hair 3 years ago...way before it was the cool thing to do.  So perhaps rocking a side mullet will become the new trend...you never know...guess we'll just have to wait and see...

Oh...and isn't this ironic...Kayla's teacher told me last week that she was very impressed with Kayla's scissor skills.  Awesome.  Great timing.  Remind me to thank her OT.

My dilemma now is do I use flowers and bows to pull back the chopped side or take her to my stylist, close my eyes and let her bob-it?  Oh, I feel sick just thinking about it...

So my Mommy lesson 7,894 is this:  Never leave scissors anywhere.  Anywhere.  Ever.  Never.  Never ever...ever.  Especially when your guard is down and you think you have dodged the haircut bullet.  Take it from me...you haven't.

What are you waiting for?  Go hide the scissors...