What The Painted Turtle offers for sick children

A friend’s child suffers with Crohn’s disease and it has been hard for him being ten, eleven and twelve and having to struggle with his condition—the discomfort, the doctors and the embarrassing and frequent trips to the bathroom.

But he recently returned from a summer camp experience that proved transformative.  Some readers may be familiar with The Painted Turtle (www.thepaintedturtle.org), but I was not.  It is a camp for children with serious illnesses, the sixth in a family of Hole in The Wall camps founded by Paul Newman and other philanthropists.  And while you have to apply and children are accepted in the order of applications received… the camp is completely free.

The Painted Turtle is beautiful and is very much a “normal” camp in terms of grounds and activities offered, however everything is set up to help children with life-threatening illnesses have a fun and healing experience.  My friend’s child, for example, found himself for the first time surrounded by kids with his same condition—kids, and even volunteer staff, with Crohn’s or Colitis. 

There is a clinic on site, called the Well Shell, and the camp understands and anticipates the special needs of the children that arrive for each session’s particular area of focus (i.e. liver transplant children, muscular dystrophy, primary immunodeficiency diseases, etc.).  My friend’s kid found himself running to the toilet with a staff member who also had Crohn’s, and who turned that “teachable moment” into a game of racing to the bathroom.  And at the bathroom this child found games and lots of things to read, as the staff well understood that these kids often spend a long time in the bathroom.

What this boy learned at Painted Turtle was that there are other kids out there just like him; and he was able to feel normal and observe how other kids cope with their illness, some of whom had even more severe conditions.  Having a successful camp experience can be growth enhancing for any child who is ready and wants to go; and if a child struggles with illness that threatens to cut their lives short and makes them feel apart from the group, this sort of unique experience seems laced with the potential to help change a child’s attitude toward their illness and their situation, which might very well contribute to their ability to heal (or to more fully enjoy life even if, sadly, they may not recover).  We all struggle, at some points, with something or other, and a sick kid anywhere is a serious concern for parents everywhere; what is essential is for us, and our children, not to be isolated in our suffering

I wanted to mention this in Privilege of Parenting’s blog for a couple of reasons.  Firstly, if you have a child with a serious illness, or know someone who has such a child, but who might be unaware of this camp, passing this info along might open an opportunity for fun and healing for that child.

But secondly, in a world where we are becoming more aware of, and sensitive to, a myriad of special needs from physical to emotional, it’s good for all of us to be aware of the Painted Turtle—to send love, to volunteer if we feel called to that, but mostly to recognize that these children, seen or not, truly are all of our children. 

Perhaps this sort of place will inspire more of us to step up, to notice what is needed and to enrich and grow ourselves by engaging in the care of the world—not as any sort of badge of honor, but as a pleasure and a privilege.  I’m sure we can all learn plenty from these children and from the examples of the generous staff who make it possible.

So, let’s dedicate this day to “volunteering” to really get it right with our kids today.  Maybe his or her “special need” is for patience, or limits or for an accurate assessment of a social, emotional or learning difference (see recent post on IEPs).  Maybe we parents are burning out and need some alone time, or some support ourselves—maybe our need is to acknowledge this and ask for (or compassionately just “take”) what we need.  And yet sometimes we simply cannot get what we need (at least not right now), and perhaps the whispered and unseen encouragement of other parents who care may find its way into your heart and give you strength and endurance.

Namaste, Bruce