The Art of Kite Flying

Saturday was unseasonably warm.  The sun was shining and kids were outside gleefully playing.  The kids rode their bikes, enjoyed a soccer game, and even played a few rounds of the classic, hide-and-go seek.  It was glorious.

Smiles were wide and we all shook off some winter blues.  The timing could not have been better.

After a while, Kelsey emerged with an unopened kite box.  She was on a mission to fly her kite.  Step one, open the layers of tape and packaging to locate the kite and its many components.  A multi-color butterfly appeared before our eyes at completion.  Kels was overjoyed.  The only problem I saw was a lack of wind…

Kelsey saw no problem at all..

She eagerly and patiently helped me affix the thread and metal springs.  It seemed that she found joy in every step of the process and squealed with delight as the flat material transformed into majestic butterfly.  

Truth be told, Kelsey’s daily injections have been tough to endure this week.  We are all ready to find a new routine.  Though we trudge through the motions because of their importance, we feel a little defeated by 7 A.M., too.

Thus, the return of the sunshine and warmth did us all a world of good.

We still had to fly our kite.  And when Kelsey is on a mission, there is no stopping her.  Persistence could truly be her middle name.  The child will not quit.

Every new attempt to fly made her focus even more on her goal.  She lengthened the rope, held it tightly, tried, and tried again.

Her determination inspires me.  Her strong will found a way and though it was only a few yards of successful flight, her joy was infinite.

Saturday, I thank you for the breathe of fresh air that I desperately needed.


Looking for a fun and festive St. Paddy’s Day event?  Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-8 P.M. at Philly Sports Bar for games, drink specials, and fun.  Win some liquor, share a toast, and help us raise money for our cause.  Save the date.  More information will be posted in the coming days.

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.

Reflections

Reflections in the cloudy bay water this weekend made me reflect on the journey I’ve traveled so far.  My reflections are sometimes cloudy, too, but I think that is because I try not to focus on them.  Instead I try to focus more clearly on the now, the positive, and the hope.

On my lap, joyous and exuberant sat a girl who sometimes sits on my lap the same way tired and in pain.  When she is feeling great, the world can not help but join in on her contagious and positive spirit.  She truly shines brighter than the sun.  

When she sits on my lap, crying or sleeping due to pain in her legs, it is just the opposite.  During those trying times, it is typically just the two of us as it was this weekend.  Those lonely moments happen far less than they did years ago.  Looking back, those nights were so frequent that they sadly became the norm.  I think back to those days now and how they all began.

Like it was yesterday, I recall Friday November 18, 2011.  My mom was off and watching my kids for the day.  When I left that morning, my two children were happy and healthy, though Kels did feel a little warm to me.  She had received her flu vaccine and nine month immunizations one week prior, so I did not think much of it.  I left my mom happily singing with the kids on my family room rug.  Neither one even noticed me leave.

I walked in the door after work to my mother in tears, Kelsey lethargic and red with warmth.  My mother could barely speak.  We locked eyes, both filled with pain, fear, and a stream of tears.  I remember the words she spoke, the few she could get out, “Something is wrong.”  I recall standing still and feeling frozen, fighting my own intuition because I just wanted everything to be right.

That night, my pediatrician assured me that Kelsey was just teething. “Advil will do the trick,” she said with a smile.  I did not believe a word of it, but I attempted to sell the teething story to my mom.  She did not believe it either.  I wanted it to be true.  However, when your child wakes with a 102.9 degree average temperature and red hot patches of skin on her body, you know in your heart that is not the case.

My mom’s words echoed in my mind almost every second of the day for the next week, “Something is wrong.”  I was a naive mom, and I was in denial.  I hoped that Advil would do the trick.  I just wanted everything to be right.  So a second visit to my pediatrician again suppressed my mommy instincts and assured me that it was just teething.  “Advil will do the trick,” she said and I embraced the thought.

But I knew that it wouldn’t.  What I did not know was how to say that I just knew that it was not just teething.  After all, I do not have any medical training.  I also did not have any idea what was actually starting to happen inside of my nine-month-old daughter’s body.  Instead, I just remember crying to the doctor that night.  It was the first time I cried about my daughter in front of a doctor.  My heart just knew what I did not have the courage to say.  That night, I knew that it was not just a feeling.  I had to find the strength to say it.

“Something is wrong,” I pleaded.  Somehow, I mumbled those three words through my tears, only to hear, “Advil will do the trick,” again.  That was the first of many times I lied to myself.  Instead of fighting for my child and advocating for what I knew was the truth, I fought back tears, attempted a smile, and gave my daughter more Advil.  I did not have a medical degree.  Yet, I still heard my mother’s words, “Something is wrong” and I knew that something was.  I just had to decide what to do about it.

Reflections can be altered through a lack or burst of light.  A cloudy day can turn sunny and picturesque in a moment’s notice.   I wish I could alter those November reflections so quickly.  Thinking about them helps me to see how far I have come, how much I have changed, and how much stronger I am because of them.   

I much prefer the reflections of the cloudy bay water and the smile I saw reflecting back at me.

Reflections