Monday, October 24, 2011

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 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 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 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...

Thursday, October 20, 2011

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 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} 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 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'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. 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.

Monday, October 17, 2011

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, 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 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 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?" 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 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......