The summer camp I go every year just celebrated it’s 25th birthday this year. The organizers keep asking me to tell or write what camp means to me. They want me to do it in a few sentences or paragraphs. I can’t. What I can do is tell you a little about how it feels.

This camp is for families with bleeding disorders. The first time we went my son was two years old. So was camp. Now, 24 years later my son is 25 also and he’s been to camp every year except one since his first time. 23 years of being a part of something. For me it’s been 22 because when he was 16 and had his license he asked me if he could go by himself. I agreed but it was awful. I’ll tell you why.

I met the first single mom of a bleeder at camp when my son was two. Until that time I felt like I would never be able to get it right, like being alone meant I wouldn’t be able to manage the care he needed. Until that time every family I had met had both parents to share the load of doctor visits, emergency room visits and bills. After meeting this mom and seeing how confident she was I thought just maybe I could do it too.

That was just the beginning. Camp taught me how to let him be a kid. It taught me that letting him play and get hurt was much better than never letting him play at all. I learned how to let go and trust other people to watch him. I got the confidence to say no to him even when he cried.

His medicine involves and IV. We learn when the kids are young how to do this so we don’t have to go the a doctor’s office or and ER every time they need treatment, which can be daily in some instances. At camp we teach them to do this for themselves so they can go stay at their friends or go away on school trips or even go on family vacations.

I’m an old timer now, seeing new families is like  like watching toddlers take their first steps. They come to us unsure and unsteady. The first steps are hesitant but we hold them up and encourage them until by the end of the week they’re as much a part of camp as any of us.

The same is true for self and home infusions. It can be terrifying to stick a needle into your child or for a young child to stick a needle in themselves. Think about this, you are going to do something that you know is going to hurt. You’re going to do it to a person you love more than anything or to yourself. But like toddlers after those first few stumbles we find out that it’s okay. We gain independence and with the love and support of others we become proficient.

The superstars of our camp are the kids and counselors that have grown up going to camp. The nurses are wonderful, patient and helpful but it’s that kid that is 15 showing the six year old how to infuse that is the super star. It’s the young adult that a camper looks up to that is the driving force to learning to self infuse as well as how to be a kind and loving person.

Thoes of us the live with bleeding disorders live in a special type of world. Our kids learn about needles, insurance, independence and supporting one another very young. We teach them to go to the doctor’s on their own as an early age because we may not always be with them to speak up. We try to teach them to be supportive and helpful to others. I don’t know if it carries over into the outside world, camp is  like this magical place in the woods that’s closed off from the rest of the world. I hope it does.

After 20+ plus year of going to camp here’s what I feel. Love. Support. Courage. My friend came to camp with us for a few years, she says we have shiny kids. I know that after watching so many of them grow up and become adults I agree. Spontaneous hugs, holding hands, putting our arms around each other. Those are the things that make us all feel a part of something. From a very young age I have watched generations learn to hug without feeling embarrassed, I’ve seen kids grow into mentors and I’ve watched our forefathers (and mothers) come back and get scooped up because we know that without them we would not have had footsteps to follow.

I can only hope I leave footsteps for people. I can only hope that one day I’ll be on the wall of pictures remembering years gone by. I can’t write this all down in a couple paragraphs.  You can’t write a feeling. I can be here as long as possible to help camp be for years to come. To me camp means a lifestyle. It’s who we are and how we teach our kids to be better people everywhere they go.


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