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.


  1. Sorry to hear about the new issues. That stinks, but I'm sure it will just become the new normal! So sorry to hear about your sister. I was in a sorority in college and I know how wonderful that bond is. That is so wonderful that you guys were able to help her!

  2. I have a good friend who's daughter cannot have casin- milk protein. I always make sure I make a set of casin-free cupcakes for her. that extra 15 minutes of my time makes the world of a difference for my friend and my daughter, so its worth it to me. As kaylas friends and your friends become aware of this, maybe they would be willing to make the extra effort to help you make things "normal" for her. Heres to hoping :)

  3. Oh my! Not sure which to respond to first...I will be saying prayers for your sister, Missy, and her family.
    As for Kayla, I am so sad for her. I know this will not dampen her spirit too much, she has too muc of it to let this get her down! She takes after her Mom after all. She will adjust and do great! This will help her to be that much more "driven!" As for the surgery, you know we have been through the ringer on that one, with his open-heart surgery and other surgeries. If you need to talk call me. And you also know how we feel about CHOP...a Godsend of a hospital, AI is great too, but me lik-e CHOP!
    Saying prayers for you!