Hemophilia age 21

No Guarantees, No Refunds, Just Life

I went on my annual white water rafting trip to Maine this past weekend. Our outfitters are CrabApple, a family owned business in the Forks, Maine, that does a great time of giving you a thrill of a lifetime. If you haven’t tried white water rafting, make it a goal for the coming year. It’s a great family experience, as well as personal adventure.

It was a scheduled dam release, with huge 25 foot waves, and class IV rapids, and the dam spewing 8,000 cubic square feet of roiling water into the Kennebec gorge. People often gage adventure sports by their risk level. Many people are afraid to try rafting; if they listened to the safety lecture about potential risks, you might see why. Our guide Jason told us one family scheduled for the weekend had quit at the last minute, changing their minds about the risk level.

“They had a bad experience last year, and decided not to risk it again,” he said.

What was the bad experience? we asked. A broken nose from a wayward oar? A near-drowning? Vertigo (which I got last year; very bad, lasted two weeks)?

“They fell out,” he replied.

Fell out? Yes, they fell out and were caught in the cold churning water. No doubt this can be a shocker, but pretty much everyone who falls out is brought back in again, and then you have a dynamite story to tell the rest of your life. This family was brought back in by their guide, safely, though I am sure they had a quick moving swim and swallowed and choked on a bit of water.

When you sign up for rafting, you are shown a video of what the trip will be like; you are given an in depth-safety lecture. You are taught what to do should you fall out. All very humorously related by Wade, who had us in fits of laughter. Of course white water rafting is no joke. You have to pay attention and battle some high water, rushing toward you, slamming you in some cases, rapid after rapid. You work in unison, following your guides commands: “All back!” “All ahead!” And you are with about 12 other rafts in your outfitters, and then can see many more rafts from other outfitters. You are never alone.

What I didn’t quite get is what that family expected. When you go rafting on raging waters, there is always a chance you could take a spill, get knocked over, flip the raft. You are blasting through rapids, after all, and this is not a gentle sailing trip. Not to expect this is foolish and unrealistic. Of course, nobody in particular wants to get “dumptrucked,” as the guides say, but it can happen. I’ve gone five years now and we’ve never had it happen. And on this trip, Wade himself, the guide, in another raft, got flipped like a pancake right off the back of the raft and had to swim like mad to get back to it, all of it caught on video which we watched and roared at later. Of course Wade got totally razzed from the rafters and the other guides.

So when you accept the reservation to go rafting, you must include the possibility, however remote, that you could go for a wild swim. In fact, I think that’s a huge part of why people go: to see what will happen. To see how they will face the unexpected, the unknown. To see what life offers them. To see what they are made of.

We all accept risks when we decide to have children. And there are so many more risks than those in rafting. Hemophilia, an incredibly rare disorder, is one of those risks. So rare, you couldn’t ever imagine that it would happen to your child. But there you are: a child with a life long, obscure bleeding disorder. I didn’t want this, but I couldn’t cancel this trip. Couldn’t return for a refund or exchange. I had to take what I got and deal with it somehow. And we did. We had ups and downs, we got slammed around a few times. We made mistakes, didn’t follow the rules, couldn’t control the river of events, and realized we didn’t have a guide all the time. But we made it. With learning as we go, a lot of teamwork, we made it.

All of parenting is a grand risk, and all of life is a grand risk, and you must take what comes, with no guarantee on the outcome and no refunds or cancellations. A rapid is a rapid, and hemophilia is hemophilia: something that catches your breath, can make you scream, is a wild ride, often out of control, but at the end, you’ve done something amazing, you’ve mastered something others fear.

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