A Four Leaf Clover

Perception.  Happiness.  I guess these are relative terms.

I have had a few moments recently where “Kelsey looks so great” has been at the crux of conversation.  That is how most people naturally perceive Kelsey.  As a result, I see that they truly do not understand that the pain and the disease are hidden deep inside.  

At first glance, Kelsey is a complete dose of sunshine.  I am grateful for that every single day.  You truly cannot help but smile in her presence.  I am guilty of calling her my sunshine because she radiates happiness.

Except when she doesn’t.  When she screams in agony with her injections or shrieks in pain because she cannot stand on her leg.  Most only see the sunshine.  Trust me, that is my preference.

We were recently granted an incredible experience to see a National Park from the air.  We were equipped with headphones to learn as the pilot narrated some of the most noteworthy sites along the tour.

While the overall ride was tremendous and once-in-a-lifetime, some of the most memorable moments came from the underlying voice in the headphones.

The lighthouse was lovely, but even more enjoyable was the tune of “I’m looking over a four-leaf clover” that embodied the moment.

Kelsey sang, hummed, and dazzled the skies with song during our flight.  The words are uniquely symbolic as I read them now:

“One leaf is sunshine, the second is rain.

Third is the roses that grow in the lane.” 

The pilot was a true professional who tuned her out entirely (or pretended too, at least).  However, she added a bit of laughter and a fond memory of that incredible flight for those on board.

No wonder the world sees Kelsey for the happy and energetic little girl that she is, it is what they see.  Her visible layer is sunshine.

The second is rain.  Kelsey’s illness is not one that can be seen.  That is why we began our journey one year ago by launching our website and our foundation.  

The unseen is where the pain lies and where the help is needed.  

Hopefully, our research efforts and your generous support in helping these efforts will lead us to a cure sooner than later to bring the roses that grow in the lane for Kelsey and all affected patients of PAN  and dada2 .  

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.