Despacito Desconcertado, Embarrassed Slowly…

As a mother with two young children, I consider myself to have some wicked dance moves.  Though that may only be true in my mind, I love to get out on the dance-floor regardless.  It can be a release and gives me a sense of stress relief.

My son’s new favorite song is Despacito and I requested it for him at a family function this past weekend.  I heard the opening notes and awaited his presence on the dance floor.

I was lost in the beat and Kelsey’s lyrics when I looked up to see him in a far corner, grooving to the rhythm and beat with his cousin.  

I tried to get his attention.  I tried to show off some of my moves.  Nothing.  He stayed in the corner and did not even look my way.

Part of the parental struggle is knowing which battles to pick.  Though I could tell this was something more than met the eye, I waited to broach the subject until bedtime.

I slyly asked why he did not join me on the dance-floor for his favorite song.  His answer at eight-years-old was honest and a sobering dose of reality.

“The truth is that it is too embarrassing to dance with my mom in public.  I’m sorry.  I will still dance with you at home.  OK?”

“Did that just happen!?” I wondered in sheer and utter internal distress.

I thanked him for his honesty and sang him his lullaby.

Eight and embarrassed.  A battle among many others, that I cannot fight.

The following night at bedtime, he asked if we could dance to Despacito together.   Kelsey cued the music and I smiled.

I know he did that for me, and I’ll take it.

Why Me?

I was called in again to tame the fear of Mr. Needle and its lurking presence in the life of my daughter.  It is never easy, yet it has become part of a routine in many ways unfortunately.  As parents, we will do whatever we can to ease a bedtime woe.

Tonight’s conversation brought me to a full halt.  I would be lying if I said I have not picked up on similar questions in the past or awaited this very one from Kelsey herself.  Sometimes the reality of a situation is far different than we imagine it will be.  

This one had my put on all of the mom courage I could muster to get through the discussion before running out to have a long cry myself.  The reality of it all hit my like a ton of bricks.

Three simple words escaped my beautiful child’s mouth.  Three words you do not wish to hear from your baby: “Why me mom?”  

I have asked that question a great many times myself.  Through sleepless nights, hospital stays, and countless tests.  I have wondered.  I have prayed for answers.  I have prayed for strength to explain it to my child if she ever wanted to know.  There it was.

I was silent and tried to remain strong and steady to truly answer the question in a way that she deserved to hear.   

She continued in her wise little way,  “I’ve been wanting to ask you this for a while, Mom.  Why only me and not my brother.  How did he get lucky and I did not?’”

I tried to use visible signals that she could understand.  “You have blonde hair, he has brown, etc.”  She seemed to get it.  But to explain that deep inside, something so powerful, so life-altering, and so invisible was missing from her body that her brother was lucky enough to “get” and she was “not” was tough to say aloud.  

I did start filling up a bit with tears as I explained, but I think that is ok.  Our emotions make us human and as strong as I try to stay in her presence, she should know how deeply upset it makes me at times, too. She wiped my tear and told me not to feel upset by it.  “You cannot change it.  I know you would take it away if you could,” she said.  Wise beyond her years.

But oh Kelsey, if you only knew how hard your family, your doctors, and your unknown friends around the world are trying to change it for you.  Someday, I hope that you not only know, but you feel it when we figure out a way to cure you all.

Speaking of Friends and Wonderful People ~ Please SAVE THE DATE!

September 30, 2017 ~ Softball Tournament for A Cure!  Pennypack Park on the Delaware




This week, I was fortunate enough to attend a workshop entitled, Entitlementality.  I must admit, I judged a workshop by its title.  I was intrigued.

While I sat and listened to a discussion about the entitlement our society feels in 2017, I thought of all of the children growing up in this age of entitlement.  A world where we have the ability to respond to a text message in the middle of a face-to-face conversation, answer a phone call during a workshop, meeting, or class session, and immediately feel gratification with food anywhere, anytime.  Our technological addiction grows daily.  I once again thought of the children.

I realized that we can model for them all of the good we want to see in the world.  We just have to make a conscious effort to do it.  We can be thankful and kind.  We can make eye contact.  We can be present more often.  We can put down our phones and silence them!

One year ago, we began the conversation about Kelsey.  I was scared to do so.  Prior to the winter of 2011, I thought that I was entitled to a healthy child, a “normal” dose of parenting, and all of its wonders.  My largest dose of perspective and loss of faith in everything I believed up to that point in my life came to a state of denial and fear of the unknown in 2011.

Years passed without an answer and I still felt entitled to that same dream for myself and my family.  I held on to faith but stood in silence hoping that it would all pass.  

Here we are in the real world.  

We feel entitled to many things, and I still feel entitled to that right for my child.  My family’s support and fearless efforts to expand our fundraising efforts, explore new technology, and find a cure for patients who suffer from PAN and dada2 is unwavering.  We still fear the unknown, but we are also entitled to hope.

When you fail, you learn.  When life knocks you down, you can lie there in denial or get back on your feet and change the course.  

Thank you for helping me voice my fears, share my concerns, and address my hope for the desire I still feel entitled to have for my child.

To more research, more hope, and a cure…

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 .