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.


The chill of January’s air captures the spirit of melancholy and angst I often feel during this dreary month.  It should be a month of renewal and a kick start to new and better things.  Though I try my very best to hold on to those signs of renewal and the feelings of bright beginnings, I am also deeply conflicted.

I think back to the woes that January has brought over the years and the new struggles of January present.  

Kelsey’s favorite doctor recently asked me how I was doing.  She really meant it, and her soft gaze opened the doors of honesty.  She really cared and we had a moment that was authentic and real.  

I am always prepared and ready for the Kelsey questions.  I answer them thoughtfully and carefully.  It was much harder to talk about me.  The truth is that every new pinch and pain from my daughter tears a little piece of happiness away from my day.   I know that we will get through this and this, too, shall pass.  I know that deep down, but this particular struggle began in July.  Every time I convince myself that we are on the upswing, we have a little detour and we start all over again.  It is exhausting.

It is taking a toll on the entire family.  Some sleep.  Some rage.  Some cry.  Some write.  We all emphasize the bright side, but perhaps we need to talk about some of the troublesome areas more, too.

A recent chat with NIH doctors confirmed that the daily injection would continue for a little while longer.  Very little is certain with this disease and doctors are figuring it out as we go.  The longer we go without those answers makes it harder to endure.  Hope springs eternal, and I hold on to it.

I believe that the cohort at the NIH will grow and that each new patient will help bring answers.  

This is a marathon, not a sprint.  I try to find solace in that.

The problem is, sprinting was one of my strengths as an athlete.  There is no personal trainer for this marathon and no rule book to follow.  Endurance is a gradual build up of mental strength and physical toughness.  It takes commitment and it takes a determined will.  

I picture how much I dreaded double sessions of soccer conditioning because I really despised that part of the training.  Running and running and running.

I just wanted to run quickly.  It seems I still want to run quickly, but I just don’t know where to go.

My lack of training is showing and frankly, I am fatigued.