Sunday, July 25, 2010

Stross Goes to Scout Camp: Day 1 (in a series)

As promised, I am inviting you to join me in an anxious week of Scout Camp, only it is one week after the fact. As such, I'll tell you now that this story will have a happy ending. And you, likely, are probably thinking: "Well, of course it does."

What I hope you discover is that such a thought doesn't come naturally for most parents or guardians of children with disabilities. We simply cannot lay down the anxiety and trust all will be well. We've navigated far too much to believe in such fairytales anymore. That isn't to say we don't believe in fairytales. Far from it. We get to live fairytales in real time and understand the hard work it takes to make dreams come true in the face of formidable odds.

The fairytale you'll get to see played out this week is a complete story with a charming protagonist (Stross), a daunting situation to overcome (navigating Boy Scout camp), evil forces (unhygienic facilities, thunderstorms, heat/humidity and rough trails), supporting characters (Scoutmaster Greg, Sister Jill, Scout Leader Dan) and a wonderfully incredible hero (Mark).

Best of all, you'll see what happens when powerful forces come together to make a young man's dream come true. May you enjoy the journey.


Boy Scout Camp – Day #1
Sunday, July 18, 2010

Sending Mark and Stross off to Camp Ingawanis - I cannot describe it. Mark’s words were: “I am scared to death.” (In fact, watch the vlog and see for yourself.) I am scared too but likely not as scared as Mark, for I am assured that Mark will be with Stross. Conversely, Mark is not assured to be the only person who knows how to care for Stross at camp this week. Our built in backup system – each other and/or a respite nurse – will be hours away should something happen to him. That’s likely why Mark is scared to death. The burden of this week is fully on him.

I have less to be afraid of because I have faith in Mark. Mark’s capacity to overcome is fierce – especially when powered by unconditional Stross-love. Mark will provide Stross’ accommodation physically when there is a need to lift him or move him from place to place. He will provide Stross’ accommodation educationally when there is a need to interpret instructions that fall outside Stross’ capacity to understand. He will accommodate Stross medically every four hours with no “turn” taken by anyone else (not even Stross) in less than ideal circumstances. (A clean bathroom at camp? Ha!) Mark will also look out for Stross nutritionally (can you say severely lactose intolerant?) for at least three meals a day plus snacks. And (this is a big one) he will provide Stross with emotional and social support when it is obvious things aren’t clicking for the man-boy in the wheelchair who is quite a bit different from the rest.

It was relatively easy for me to wipe my tears and park my worries in our driveway as they pulled out today, for less than one hour after they left, I had to be dressed and ready to perform a musical number in a fine arts fundraiser at our local high school. (A Broadway show-tune is always a wonderful distraction!)

So while Mark and Stross drove to camp, checked in, pitched tent, passed a swimming test and ate supper, I typed my lyrics, curled my hair, stepped into a semi-formal, grabbed my bag, and jumped in the car of the friend who was my ride. Then, hours later – after a sound check, the event, and the fund-raising dinner – I caught a ride home with Mark’s sister, Iris, and her family who coincidentally were attending a volleyball clinic in the gym.

That’s why Stross called at suppertime. He knew we would all be having pizza together. So when the excited call came, we moved the pizza boxes to the side and gathered around our speakerphone. (Stross actually requested that his call be on speakerphone so all of us could ask him questions.)

I tried to catch Stross’ emotion on the vlog. I hope you can hear his jubilation. I’m not sure if you can also hear Mark’s lingering fear in the background. I can.

And when Mark called me even later – without Stross around. I could hear it even more. There are things he isn’t sharing with me. There are words he cannot bring himself to tell me. I have to be careful what I ask. If I ask too well, he might not call back as much as I hope he will. I have to figure out this long distance dance. I want to know things. But I don’t want to alienate my best source of information. What is he telling me, but not telling me? Are things working out well or not? Should I be worried or not? How much encouragement does Mark need? Is over-the-top encouragement going to alienate me?

I’m tired. I need sleep, and I can actually crawl in bed before midnight tonight if I want. Stross isn’t home for midnight cares, and I don’t feel the need to stay awake with Mark as company. I wonder what care schedule they are on now. When do the four-hour segments hit? I wonder if not knowing the new routine will help me not automatically wake up.

For now I know this: Stross is deliriously happy. He’ll sleep well tonight. I just wonder how well 6’ 2” Mark will sleep on his 6’ 5” cot.

And, wow … I wonder if I can sleep 8 hours straight?

I wonder how Mark really is.

Next: Stross Goes to Scout Camp: Day 2 (in a series)


Anonymous said...

Oh Joy, I can't believe Stross is going to/went to BSA camp. We have friends who were there last week with their son. And in a few years that will be us with our oldest. Can't wait to read the rest of the week. By the way, is that the same El Camino in the garage that Mark drove when I was at Waldorf? Love to you and your family....Mandy Gleissner

Joy said...

Thanks, Mandy!

Yep ... that's the one, the only El Camino.

Thanks for joining in the journey!

James S Johnson said...

I will follow.
Sometimes I think, that as parents now, we still have those hard parts of letting go, letting grow no matter what we said when we were young. Especially when as parents we are there to witness those moments. It does sound like day one went well...the toll on his parents? As always, seems more real even if imagined...

Open mind, open heart.
- James

Joy said...

Cool! Thanks, James. Great to have you on the journey, too! In fact, been enjoying seeing a bit of your own. Punk rock on!