Camp Courage

Last week I accompanied Jack on his first over night Boy Scout camp.  If you know me AT ALL, my idea of camping is walking barefoot through a suite at the Marriott. It is just not my thing.  However, Jack had been talking about it for weeks and his buddies were going too so HE was going.  As we led up to the event, Beth and I thought it would be good for me to go along and make sure he was OK. Initially, I balked thinking he has been through so much that camp should be fine. I know a few other Dad’s were going with their kids but I didn’t want to be cramp his style.  In the end, we decided that I would go for a few days and then leave because our good friend Brian Riggins (who Jack loves and is a Scout Leader) was coming up mid-week.

The big talk of the camping trip was the white water rafting adventure.  On Day 4 we would head down the Nantahala River for some fun. For those of you who don’t know, the Boy Scouts of America (BSA) are deadly serious about safety and insuring that you’re all good to go.  Prior to the trip I needed to get 3 different medical forms and waivers filled out and one signed by my physician.  Jack did too.  We also had a waiver to fill out regarding the white water trip.  We did and no big deal.

Sunday afternoon I drove the 2 hours with Jack and his buddies to camp. It was hot.  About a mile outside of camp, I noticed LOTS of debris, leaves, branches, bigger limbs strewn all over the place.  It looked like one heck of a storm came through.  I thought to myself that I wouldn’t want to be in a damn tent through something like that!  We arrived to check in and lunch and I asked one of the counselors about the aforementioned debris field. “Oh, yeah, he says with a curious smile, we had a 138 mile winds come through camp last night.  Lost 68 trees!” “What?” I said.  “Yeah, it was scary but kinda cool”, as he nonchalantly walked away.

Shortly after that exchange we started to learn more about our week, where we would be camping (site 16) and our accommodations.  We were told that we would walk to camp, pick our tents and then get ready for the swim test.  The swim test would be held in the lake and in order to do any water activities you have to pass the test.  Cool.

So we get our daypacks and start walking to the site.  It is a little over a half-mile away but we are in the Georgia Mountains so it was up hill.  

One of the things most people do not realize is the toll NF can take on their core strength and endurance.  I remember visiting Jack’s geneticist many years back and he said that people who have NF can often struggle with many seemingly normal physical tasks and the reason for this is the lack of core strength.  He essentially told us that day that someone with NF is exerting SIX TIMES the energy of the person they are walking beside…just walking.

Well, didn’t that hit me like a ton of bricks in that moment?  We did our best to keep up with the pack but we fell a bit behind.  Despite that we kept moving.  “You good Jack?”  “Yea, Dad.”  We got to camp 16 and were assigned our accommodations.  Heavy, green, canvas tents with a 2 cots inside was where I would be sleeping.  3 or 4 HUGE daddy long leg spiders welcomed us immediately.  Nice. As we began to get our gear into my tent and then Jack’s into his tent, it was announced that we would now be walking to the lake for the swim test and we should suit up.

At the lakeside we are told that the swim test requires 3 25-yard laps of “forward stroke”.  You could use freestyle, breast, butterfly or side.  After those three laps you need to complete a 25-yard backstroke and then float for 1 minute on your back.   I don’t swim much but I didn’t think too much of it.  We got in 2 lines and Jack went one way with his buddies and I went the other.  I watched some other boys exit the lake after their test was completed.  Nothing really alarmed me too much.  Slowly but surely, some of the adults were not looking so hot coming out.  A couple of them walked by us and muttered, “good luck” or “that sucked”.   I was next.

As instructed, I jumped in and began my laps.  25 yards, no problem but I was more tired than I expected.  Next 25 and I couldn’t believe that I was feeling so gassed.  The entire time I was thinking about Jack and how he was doing and I started to panic.  If he needs to work SIX times as hard this has to be killing him.  Focus.

I’m now into the 3rd lap and I’ve resorted to the sidestroke so as to keep me alive.  I could not believe how hard this was.  The lake water felt like maple syrup.  I knew I needed to get on my back and mercifully I made it through the 75 yards and onto the last 25 on my back, praying I didn’t drown.  All the while I was wondering about Jack.  I floated and I finished and I began to exit the lake.  As I climbed the ladder and I walked to the beach to look for Jack.  I sat down next to him trying to understand why I thought my head would explode and asked him how he did.  My headache got worse.  He tried his hardest but did not pass.  I said I was so sorry.  The lifeguard then came over to high five Jack and let him know he could retest.  

Test over.  We walked back to camp to get ready for dinner. He wasn’t saying much. I still had the weird headache.  He was assigned waiter duty and we had our first meal.  The kids hung out at the trading post for a while and then we had opening ceremonies that went until about 10 PM.  We then walked back to camp in the dark through the woods.   What I clearly and quickly remembered is that in addition to the fatigue that NF gave Jack it also messes with his balance.  Walking through dimly lit woods does not help with that and all I could think about was how much he must have been struggling to keep up to his friends.  I was tired and I don’t have NF.  After a bit, he started to fall back near me as the boys kept moving forward to camp.  I walked with him and we started to talk about the day.  He grabbed my hand as we walked and I soon was overwhelmed.  Jack doesn’t hold my hand too much anymore.  If I try to hold his he often lets go right away.  Not this time.  We walked together.  I wasn’t sure who was holding whom. I thought he was so brave.

We got back and he was done.  The other boys were still excited about the day and were planning on staying up late.  He didn’t have the energy and he asked to stay with me because I was solo.  I complied and we began to go to sleep.  “Daddy, that swim test was hard but I think I want to try again.  Was it hard for you too?” I told Jack it almost killed me and he laughed having no idea how serious I was.  I said we would decide tomorrow because we had a few days until rafting.

Reveille blown on a trumpet at 6 AM sucks.  Not too much sleep but day 2 and the pursuit of merit badges began.  He went to his classes and I snuck in some emails.  I looked at his requirements for “Mountain Man” class and it said FIVE MILE HIKE!  Nope.  I went to the class and pulled the leader aside and explained what was up and those 5 miles wasn’t happening. He was cool about it and indicated Jack will do all the other requirements, etc.  At lunch he sat with the boys and I watched from a distance how much he was laughing and having fun with the kids.  It was really great.  Before afternoon classes I asked about the retest and he said maybe tomorrow he would try.  I reminded him that he didn’t have to do it and that I have an alternative plan other than rafting.  He told me he really wants to go.  

Day three came and he woke up saying he wanted to swim test again.  After classes we went down for the afternoon swim and tried to get him a retest.  Jack’s friend Jack Flynn was there and was thrilled that Jack was going to retest. “I really want you to go with us”, he said.  He stayed with me to cheer on Jack.  The lifeguard took Jack and asked that we stay put so as not to distract the process. I wanted to be IN THE WATER with him but I agreed to stay back.  He was about 50 yards away so I couldn’t see.  Jack Flynn kept asking what I thought and I said the longer he is in the water the better.  Shortly after, I saw the lifeguard help him out of the lake. He slowly walked over and said he didn’t pass.  Before I could respond, his friend Jack Flynn said that it was very brave of him to try again and he was sorry.  I was astounded by the comment and the empathy and thought to myself that my boy has really great friends.  Jack hid his sadness and his friend took off for the “deeper” part of the lake.  Jack was stuck with me and I was out of ideas.  I asked him to swim with me in the lake and said he didn’t want to.  I asked again and he obliged.  I asked him what happened.

The first test just two days ago he swam just the first 25 yards.  The second test he swam 65 yards but couldn’t do much more.  He thought he was going to drown. “Jack, I said, Let me tell you a secret.  If roles were reversed and I didn’t pass the test but you did I was never going to retest.  I was too scared and I was going to tell you that you would go with Mr. Riggins.” I told him how brave he was and that I wasn’t kidding.  I hugged him and said we have other plans for tomorrow.  We swam for a while and I thought how lucky I was to be his father.  He tries so hard to be one of the guys and tries harder than anyone I know.

Wednesday came and the troop went rafting.  I got Jack signed up for an additional merit badge and we went to the rifle range to shoot some guns.  He loved that and was a good sport all day.  I was happy for the extra time we got but hated the reason.  At one point we were sitting near another boy at the trading post.  Jack walked by him and I was out of earshot but could see the boy talking to Jack.  He and Jack engaged for a minute or two and I was anxious to know the conversation topic. I knew what it was before he told me.  I often ask myself how I would handle the stares and the whispers and the questions about my appearance when I was just 13 and I don’t know.  What I do know is that I hope that I would be as brave, open and honest as Jack is, but I doubt it.  Anyway, Jack told me that the boy asked about his eye and why it looked that way. He told the boy he had NF and that it was a tumor.  The boy said he was sorry and that he hoped he would get better.  “He told me his Dad has a tumor too, Dad and I felt bad.”  I told him he was the coolest kid on the planet and he looked at me and smirked.

Looming ahead was that he knew I was leaving that evening and I could sense that bothered him.  I think missing out on rafting and 3 days of rain and fatigue caught him.  He would never ask to leave with me but I needed to ask him.  I did. “I think I want to go home.”  I was so glad I asked.  If you asked me before camp what my response would have been it would have been the opposite.  Stupid thoughts like he needs to stay or suck it up would have likely prevailed.  I was happy I asked.

I told his troop leaders, who are great guys and who give so much of themselves, that Jack was going to leave. They understood. Keith Pry, the Scoutmaster, pulled Jack aside to tell him how proud he was of his efforts and that he was happy he came to camp.  We drove home with his buddy Drew arriving about 10 PM.  I asked Jack if he was tired and he said yes.  I asked if he was too tired to see Jurassic Park at 10:30 as a special treat.  “Really?  We can do that?”  I said, “Sure!”

It was the least I could do for a boy who taught me (again) how to be a better man, a better father and human.  Jack taught me more lessons in 3 days then any one else I have ever met and he is just 13.  I am lucky to have him and so is the world.  For almost 72 hours straight in innumerable ways, Jack showed me one of the greatest virtues anyone can ever have and that is COURAGE.

He will need to tap into that as his journey with NF continues.  Please stay with Jack folks.  Trust me, you get way more out of it than you can ever put in.

Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER.

Jake, Beth, Jack, Luke and Grace

 

HERE IS THE LINK BACK TO THE POST ABOUT HIS SURGERY:  http://www.curenfwithjack.com/content/his-shoes-0