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…