The Story Behind the Smile

The story behind the smile… the story behind the photo is one of a child with a rare disease on the first day of school who found excitement covered by fear.

In this photo, large red lesions covered the skin of an otherwise smiling face and joyful young woman.  A sweater on the 92 degree day was worn to mask the red posts along with high socks and a long dress strategically placed around the worst of them.   Her positive and calm demeanor were met with anxious feelings and fear about what the other children would say if they saw.

She told kids they were bug bites.  Then she was sick of that story so she said they were rug burns to others.  Overall, she was scared.  She told a story because she did not want to get into her disease with everyone (so she said).

The lies she had to tell others to feel confident on her first day of school were challenging to hear as a parent.

Consequently, the parents of a child with a rare disease felt anxious and were at a loss for words.  Their brave child embarked on a new year in a way they never experienced before.

Sometimes the smile a child is wearing is not reflective of the feelings they face inside.

The story behind this photo is one we will not forget, but one we are proud to share to remind us all to share a kind word to make someone’s day.  You never know what is going on behind the smile.

Six and Full of Sunshine – Happy Birthday

Six years ago, I awoke full of joy and excitement over the soon-to-be arrival of my baby girl.  2011 was the best January of my life.  Hope sprung eternal, snow piled high, and a true gift to our family was born.  

Kelsey’s sweet face was alert and full of wonder.  Her tiny hands clutched our fingers.  Her brother stared at her with curiosity and awe (maybe a tinge of jealousy, too).

We brought Kelsey home to a nursery of brown and pink flowers, infused with butterflies and symbols of love.  Her name was rhythmic and powerful.  She was strong from the start.  It seemed that she was everything I had hoped for in a baby girl.

Some how, some way, Brendan and I were unlucky enough to pass along a condition that depletes us at times.  We cannot help but remove our rose-colored glasses and face the facts.  The truth is, Kelsey makes it easy to wear those glasses most days.  If you look at the world through her eyes, it is a place filled with wonder, beauty, and kindness.

Every morning, there is a true glimmer of hope that wakes up seemingly full of more sunshine and happiness than when I kissed her goodnight.  Her name is Kelsey and though her six-year journey has been arduous, grueling, and a daily struggle, she makes it easy to forget the health woes and worries.  One ecstatic smile can easily replace the worry.  You just feel better being near her.

When you speak to Kelsey, you can lose sight of how young she is because of the depth of her understanding.  The complexity of her vocabulary astounds you, and you remind yourself that her life experiences have given her a perspective that most others simply do not have.  She is always looking on the bright side.  Sometimes I actually find myself lost in a smile and she will ask me why I am feeling so happy.  My answer is simple, “It is because somehow, you are mine.”

Every day I am so grateful that she is mine.  Heartache and insurmountable worry aside, she is the “sunshine in my pocket.”

She involves other children in play, never wants to leave a friend out, and always thinks of others.  Sometimes, our dinner conversations are more about how she can help a classmate (with something the person likely does not wish to be helped with…) more than they are about herself.  She is just remarkable.  Even her choice for plate color and peanut-free treats for school were all about the other kids.  She wanted yellow and pink so the boys and the girls would be happy.  Then, she picked out DEEP BLUE plates.  The girl who loves pink and purple chose dark blue.  I had to ask for a rationale.  “Mom, the boys will not want to eat off of a pink plate.”  That is Kelsey.  I bought pink plates anyway.

I bought you those plates because today is your day baby girl.  Bring in those PINK plates and have your PINK cookie with a huge smile.  Soak in the songs and smile as only you can.  

Today, my wish for you is a year that does not try to break your spirit like the last few months of five did.  You did not let it, and I will make it my goal to let your positive spirit guide mine today.  There is nothing sweeter than watching you smile.  You are jumping for joy today.  

Happy sixth birthday!  You are my girl, my sunshine, and my strength.   Stay strong, compassionate, and positive.  May your every wish come true.