Tangible

When you can touch something it's real and reassuring.

Not everything is tangible, but it is nice when it is. 

Children who are in and out of the hospital with chronic illnesses only know their illness as a way of life.  What most of us know to be true is that illness is not "normal".

I struggle with explaining  to my "Christian" why he has hemophilia when he tells me he hates hemophilia.  There is not a good answer.  God didn't "give" him hemophilia, it wasn't bad luck, he wasn't a bad boy…..it just is.  And I continue to tell my beautiful son that he just wouldn't be "Christian" if he didn't have hemophilia and that I love him exactly the way he is.

I would love for him to not have the bleeding disorder, but it is my responsibility to help him have an empowered life, hemophilia or not.

A few years ago at our hospital (University of New Mexico Children's) they began to participate in the Beads of Courage program.  It is a program that is found in many hospitals across the country that gives children beads for every procedure, milestone and event in their medical history.  It provides a tangible piece to their journey.  The Beads of Courage program hosted a nationwide event on Saturday, September 20th and my son was looking forward to watching the glassblowers make the beads that he treasures.  He was even able to request his "dream bead"….a Lego bead. 

Since he was in the hospital during the event, I stopped by to pick up his bead. 

 

It was specially wrapped with his name and the name of the designer…Nan Charif of Tucson, Arizona.

Oh my goodness….for my son, who had an extremely rough week in the hospital to open a special package with his dream bead was just priceless!

 

This completely warmed my heart today.  Maybe the beads are more for me than my son.  I know that what my son deals with is more than most people will ever endure in a lifetime, and he is only eight years old.  Part of me hopes that he doesn't remember everything in as vivid of detail as I do.  But I want him to know that what he has endured has been beyond limits.  That he has a strength in him that many people only dream to have. 

 

He is one of the bravest people I know.