A Magical Night at Camp

It’s time… time to sign up for SRNA family camp at the Center For Courageous Kids!  When I received the email today, I asked my 11-year-old daughter, Ireland, if she wanted to go to camp this year.  She looked at me in total disbelief for asking…”Of course!!!” she said.

My daughter has an auto­immune disease called Neuromyelitis Optica (NMO), which causes the body to attack itself in specific areas and form lesions.  She has had NMO since she was 6 years old and has had 4 major relapses.  During those relapses, lesions formed on her spine, her brain, and her optic nerves.  The attacks caused a lot of damage, but after starting a chemotherapy she recovered some of the functions she had lost, and the attacks have since stopped.

Ireland has wanted to go to camp for many years now, but we never felt comfortable sending her to a regular summer camp.  Last year, I found out about SRNA family camp after watching a video on YouTube.  I was fascinated by the fact that these kids did not feel limited at camp and were meeting other children who were experiencing the trials of the same exact disease!   I started researching as much as I could about SRNA camp….I wanted to make sure that this was a good idea before I got Ireland’s hopes up!  After filling out the paperwork, I was contacted by camp and SRNA who let me know that our application had been accepted, BUT the camp was very full and we would have to share a room with other girls and their mothers/grandmothers.  To be honest, I was very happy that Ireland had been accepted, but very disappointed to be sharing a room with people we didn’t know.  I wrote to Chitra at SRNA and let her know all the reasons why we couldn’t stay with other people (Ireland’s suppressed immune system due to chemo, etc, etc).  Shortly after that, I received an email from Sandy Siegel at SRNA.  He encouraged me to consider the good that would come from us staying in a room with other mothers and girls who had a disease like Ireland.  After reading the email, I first thought, “Who the heck is this Sandy guy?” and I started googling all the details I could about him.  I quickly found out that he is a very important guy at SRNA – he helped found SRNA.  I begrudgingly decided that I needed to get over my fears and just go to camp and share a room with these people that I didn’t know.

I’m writing about this today to let you know that it was one of the best decisions I ever made.  I almost didn’t take my daughter to SRNA camp because of my fear…..my fear of meeting new people and of having to be “social”, of having to talk over and over again about this stupid disease, and my fear of my daughter not being accepted by the other girls (because I’ve seen her get rejected because of this disease many times).  So I hid my fears behind our numerous medical excuses but I think Chitra and Sandy knew exactly what was going on.  We did end up going to SRNA family camp, and it was a wonderful experience.  We were 4 mothers and 4 daughters in our cabin, and right from the start we were all having a great time and got along very well.

SRNA Family camp is pretty amazing because there are so many fun things to do, but I have to tell you that something happened on the second night that we were there that made it even more great…maybe even magical.  The girls were all in bed, the lights were out, and one by one they started talking about their disease, their struggle with it, and their hurts.  Every girl shared something very deep.  All of us mothers didn’t say a word and I think a few of us were quietly crying in our beds…. we knew our daughters and granddaughters were telling their stories, some for the first time, and by sharing with each other they were beginning to heal.  It was a beautiful thing and whenever I think of SRNA family camp I will remember that magical night.  So, thank you Sandy and Chitra for encouraging me to let go of my fears.   I hope that if you are reading this, and fear is standing in your way, that you too will consider the good, and be encouraged!

Here is a video we made about camp. We look forward to meeting more families and making friends at camp!