Run, Sarah, Run

Every morning it takes great courage for me to put my daughter on the bus, waving to her as she departs off to school.

But this is nothing compared to the courage of my friend Sarah, who stands next to me at that bus stop waving to her seven-year-old son, too.

On the surface, Colton looks just like any other eager second grader.  He’s got a goofy smile, happy outlook, and always carrying his backpack on one shoulder while leaping on the bus with youthful enthusiasm. 

But Colton also has a debilitating genetic disorder called neurofibromatosis (NF).  NF causes tumors to grow all over the nervous system and can cause blindness, deafness, learning disabilities and severe chronic pain. These tumors can also become cancerous.  There is no treatment and no cure for NF.   

One of the most difficult parts for Sarah is telling people about Colton.  Currently, Colton has a large inoperable tumor in his upper leg and other small tumors he is managing with the help of his doctors.  But otherwise, Colton looks normal and healthy right now. 

For Sarah, this is both a blessing and a curse.  The blessing is that Colton’s condition has not yet developed into visible restrictions to his daily life.  Yet the curse is that the seriousness of his condition remains hidden from friends and family. 

They say that parenting feels like your heart is walking outside of your body.   Sarah’s heart is walking around, leaping on a bus every morning, with an incurable disease that can manifest further at any moment.  NF is a progressive disease, and there isn't much more Sarah can do other than watch and wait.  It leaves her feeling fearful, powerless and without any control.

I have immense and knee buckling respect for any mama that can live this way.

Two years ago while researching NF, Sarah learned about Cupid's Undie Run, which benefits the Children's Tumor Foundation.  They discovered this fundraiser for NF research to help find treatments and a cure. Can you imagine the amount of overwhelming research she did?  She told me, “That’s just what you do when you find out your child has an illness you have never heard of before his diagnosis.”

Sarah and her husband Nick knew that fundraising for critical research that may one day help Colton was something they couldn't ignore.  They wanted to get involved - and in a big way.  It is something - the only thing - they CAN do to try to make a difference, hopefully in Colton's lifetime.

That, my friends, is courage.

I will never know exactly what Sarah is going through.  But I do know what helps: Listening.  Learning.  Caring.

So I’m listening to her, learning about NF, and caring about Sarah.   She is the unsung hero in this story. 

Here in Minneapolis on Saturday, February 13th, the temperatures will be frigid, and Sarah will be running in Cupid’s Undie run.  But I’m certain Sarah has endured more than a run in the cold. 

I can imagine her running and thinking, “Is this all you got, winter?  Do you know I am stronger?  Do you know how far I would run in the cold for Colton?” 

Bring it, Minnesota.   She’s ready to run.

P.S.  You can help by donating to Sarah’s campaign or joining a team.  Together, we can be the difference in the lives of children and help #endNF.