Friday, July 30, 2010

Stross Goes to Scout Camp: Day 6 (in a series)

Boy Scout Camp – Day #6
Nighttime, Friday, July 23, 2010

Today I got to see and experience a little bit of what camp was like for Stross and Mark this week. But only a little bit.

I am fully aware that everything that has happened for Stross this week absolutely could not have happened without Mark. My contributions pale in comparison, as do those of the Scout leaders and camp counselors. Sure, we could say it took us all working together. But, really, without Mark, nothing else could have happened as easily or with the focus on what really mattered: making Stross’ dream of attending a real Boy Scout Camp come true.

Mark and Stross were up at 6:20 a.m. and on the road back to camp by 7 a.m. Mark slept soundly last night even after taking two fairly lengthy afternoon naps. He was beyond tired yesterday, but his time of respite had him rejuvenated enough to head out the door in plenty of time for Stross to get to his first session. In fact, those at camp worked with Stross today to help him catch up on what he missed yesterday, so by the time Skye and I arrived at camp, courtesy of a ride from my sister, Jill, Stross had everything punched on his card: a rewarding accomplishment. But, again, it didn’t happen easily and not without a great deal of support for Stross’ brand of independence.

A day is coming – sooner than Mark and I care to admit – when we will need to broaden our circle of support even wider, entrusting others to help us keep making Stross’ dreams come true. Soon we will need to do what all parents do – facilitate launching both of our sons into situations that will allow them to be as independent as possible, according to their respective abilities. Where Stross is concerned, that means expanding our team of respite nurses and supported community living supervisors to also include an organization with resources – personnel and medical – beyond what we can provide for him. And we will have to do it, because we cannot always be here to keep doing these things for him.

I am not sure if those of you who are reading this fully connect with what you have been experiencing. Lurking under all of the anxiety-ridden and problem-solving experiences, and even infused in the joyful and peace-filled moments of accomplishment, there is an undercurrent of mortality. Mark and I faced our deaths this week.

Who will do this for Stross when we are not here? Who will help make his dreams come true?

We don’t have answers to those questions yet. We have ideas. We have some contingency plans. But we don’t have sufficient answers to our life’s most important questions. I wonder if parents with children who have disabilities ever feel that they do. I also wonder if they too hope to outlive their child for their child’s sake.

We are not worried about Skye’s future.

We are deathly afraid about Stross’.

During the span of his two decades of life, we have lived conflicting dynamics. We know how much things cost, and we know the types of things insurers label over-and-above. We know what we want Stross to have according to our definition of quality of life. We know there are people who believe that if you cannot afford healthcare, you should figure out how to live without it – or not live, I guess. We also know there are people who fight extremely hard to fashion laws regarding situations they have never personally faced.

There were many who fought hard against the Americans with Disabilities Act (ADA) 20 years ago for economic and principled reasons, yet we cannot imagine what our son’s life would be like today without the provisions of that law, even as poorly enforced or followed as it sometimes is. Same for the door-opening education legislation passed in the 1970s known as the Individuals with Disabilities Education Act (IDEA) and others like it. People fought against those laws before they were enacted too – again for economic and principled reasons. And, again, I cannot imagine what Stross’ life would have been like without them.

Separate might seem easier for some who live in our shared society, but separate is not equal. And those who cannot navigate life normally need a way in.

Could Stross have gone to a camp for special needs kids this summer? Sure. Would it have been painful for us? Yes, but in fully different ways – and one very significant way: It would not have fulfilled his dream.

For now, for as long as we possibly are able, we can help do that for our son. We will stand by and with Stross for as long as he needs us, even after we launch him into a version of supported independence that we cannot fully fathom today. We will know when the time is right. We will know when the organization or system we’ve put in place is right. If we cannot determine that, we will not have done right by him.

I hope you have time to sit back and enjoy the 9:58 minutes of this Family Night video. Will you be able to see what happened this week through Stross’ eyes? I can, and I love the privilege of seeing life through him. I love how he continues to usher in moment after moment of involuntary joy. It’s a lot of pain. It’s a lot of work. But I cannot imagine what my life would be like today without him.

Thanks for traveling this journey with us.

Next: Stross Goes to Scout Camp: The Complete Series


CathyO said...

Lovely writing, Joy. And so full of good things. I will ponder all these ideas as I pack up these boxes and disrupt my children's lives. Independence is difficult.

Kevin Harris said...

Enjoyed the tour of camp! Beyond words to see Stross so into camp and all that it is, brings back memories.

Belynda said...

How blessed Stross is to have parents who pave the roads for him. Thanks for taking us on this camp journey. Mark had a big job, making camp accessible and safe. You guys are wonderful parents.