Tuesday, June 23, 2009

MDA Camp Canceled / The Story "Maybe"

For those keeping up here rather than elsewhere, we received our next rude jolt from the Universe Friday evening.

We were sitting at the pool with friends while our kids splashed about when at 7 P.M., my wife's phone and my phone began ringing in sequence with numbers we didn't recognize. Checking the voicemail, it was the Muscular Dystrophy Association (MDA) office in Maryland. My wife returned the call and relayed the message to me:

"Camp is canceled."

... that is, the MDA Summer Camp, our son's first, the one that was to start on Sunday.

Muscular dystrophy patients, particularly the older ones, are prone to respiratory problems as the cardio-pulmonary muscles deteriorate. The Swine Flu epidemic, we were told, had already affected several of the camps that had occurred across the nation, sending campers to the hospital for care. The MDA made the call to cancel the remaining camps to avoid endangering additional campers.

We were all devastated.

We only received my son's diagnosis just under two years ago. Naturally, we knew something was off, but to us he was normal. We moved through the first year of sadness like rocks through a tumbler, somewhat damaged, somewhat polished; yet, as his life increasingly deviates in form from that of other boys his age, we see forward a bit beyond his focus.

We were invited to apply last year to the MDA Summer Camp program, but declined. With him still very active and with us having some cash in hand, we wanted the time together---there would be time for the camps later. This year, though, the choice was harder. My son has only a few peer friends and his physical activities are increasingly limited; he reaches out for more contact and play, and loves the different activities associated with any camping adventure...

... but, was I ready to give my son such a glimpse into his own future?

It does not take a Zen master's insight to see the error in my thinking, but this issue is very real---and very common---to parents, and simply knowing this truth is not enough to clear the apprehension.

Unemployed for far too long, money and insurance are issues to us. The application itself was a bit overwhelming. What we would have to accomplish before the deadline seemed insurmountable at the eleventh hour. The stress even in considering it given every other issue was terrible. We put off one or two calls from the MDA, which was waiting for our decision. We were initially wait-listed, so this was something we did not have to consider---fate made the choice---but then the slot opened and we had to decide on our own. My wife handed me her phone one morning; the MDA representative was on the line... I took the call, ostensibly to tell her that we would decline, but ended up to agreeing to send our son.

The MDA knows our fears; after all, they have been working with parents in our position for many, many years. She told me very clearly what I already knew beneath my fear: in my words, the child does not yet suffer from the parent's disease; he does not see himself as handicapped. He knows he has limitations, of course, and he knows that he is different, but he does not handicap himself. Just as importantly, though, the MDA Camps and counsellors have broad experience in handling these situations, the parents and the kids.

We did the paperwork, engaging MDA and Children's Hospital in DC for their help, and we were approved for the camp---and we gave my son the celebratory news! He made a paper chain, tearing one link away each day in the countdown, and chatted incessantly about the coming adventure with everyone. We attended a "meet the counselors" event, and met wonderful people and fellow campers. The excitement continued to build: there would be horseback riding, Harley Davidson sidecar rides, swimming, arts & crafts, dancing, firehouses competing for the best meal made for the kids, ... Anyone would be envious!

As our own submission was delayed, so to was the notice of our application's acceptance---as well as the camp packing list. The free camp would not be entirely free to us... The packing list for a full week away is quite extensive. We lacked several items and had delayed buying new things while money is short. We scrambled to decide what was really necessary, to find the money, and to make some purchases...

... and then we received the news.

... and now we're trying to have a fun week with the boy at home.

These roller coasters are emotionally trying and exhausting, creating all sorts of friction when people are most vulnerable. Through it all, though, there is something to learn: What is the source of all of the feelings of elation and devastation?

There is an old story found in the Zen tradition known by some as "Maybe."

There was an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. “Such bad luck,” they said sympathetically.

“Maybe,” the farmer replied.

The next morning the horse returned, bringing with it three other wild horses. “How wonderful,” the neighbors exclaimed.

“Maybe,” replied the old man.

The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune.

“Maybe,” answered the farmer.

The day after, military officials came to the village to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.

“Maybe,” said the farmer.


The story, of course, has no end.

Why do things unfold as they do? It is, of course, a mystery. How such an unfolding affects us, though, is where our work lies.

[The "Maybe" story has variants; the edition above was found here: http://www.renegadezen.com/zen-stories/maybe.]


Andrea said...

This is a great, and very sad post. I am also a blogger, and am interning with MDA this summer in the Washington DC metro area. I am so sorry about camp; I know I was looking forward to going and I am sure your son's excitement was tripled that. I hope your family finds comfort this week and finds some fun as well. I loved the farmer's story "Maybe" you posted as well.

Ordinary Joe said...

Thank you, Andrea :-)

It should not be a terrible surprise that we, the parents, are the one's who are dealing with residual impact, much more so than my son. While his devastation was very honest and very real, he was just as thoroughly excited about joining my wife and me for lunch at Chick-fil-A today and just as much looking forward to a trip to the pool.

Undoubtedly, it'll always be the parents worrying about what the kids are worrying about until we understand clearly how to see things through their eyes. The roller coaster is more of our ride than his ;-)

Ordinary Joe said...

By the way, Andrea, congratulations on your decision to intern with MDA! All of the MDA representatives and counselors we have met have truly impressed me with their compassion and their want to help us. I don't know where we would be now without them!

[We were going to be camping with the Maryland group, but have met several of the crew from DC Metro through our clinic visits to Children's Hospital in DC.]