Stross Goes to Scout Camp: The Complete Series

There are about 800 copies of Involuntary Joy in circulation. Those of you who have read it know that it tells the story of my first five years of motherhood. But it is not only a mommy memoir. It recounts how Mark and I met and how we forged the earliest years of our marriage. It also shares what happened to us individually as we navigated the perfect storm that Stross' birth set in motion, and how we learned to grieve things that we couldn't fully understand we had lost. Perhaps it also shows how we - somehow - have managed to stay together.

My motivation for writing Involuntary Joy was simply to tell a story that life had not yet allowed us to share. I sensed there were countless other families in the same situation - wanting people to know what had happened to our lives because of a child with extraordinary needs. I was simply willing to bare it all. To write things that people sometimes fear to say aloud.

It struck me that I did that again this week by sharing my day-by-day account of what it took for us to get Stross through Boy Scout Camp. These blogs have come the closest to me writing the sequel to Involuntary Joy that I sometimes get asked about. And unlike a book, you get the videos too, so you can see and hear Stross for yourself.

Maybe there will be a real sequel to Involuntary Joy one day. I don't know. I guess I would first have to know that people would really want to read it. But please know this. I am deeply thankful to those of you who traveled our Boy Scout experience with us. You dared to share in our vulnerabilities, and I trust that you - in some way - felt it worth your time.

I believe it is too easy to look, smile, and then either say or think something like: "I don't know how you do it." Or, "God never gives you more than you can handle, does he?" Or, "I admire you. I sure couldn't do what you do." Or even, "Such a blessing. God knew what he was doing when he gave Stross to you."

When I mentally prepare my response, I always - always - resist the urge to rebuff. I know that the person who is sharing the statement intends it as a compliment. I know that. I do. But it always feels like Mark's and my experiences have been lessened in someway - edited to a manageable Hallmark After School Special.

What I hope to accomplish whenever I write about Stross is to invite others to really share the stuff of our lives. It's my way of saying:

• Do you really want to know how I do it?

• Have you ever taken the time to really consider what you would do, the choices you would make, how you would live your life differently because many things you took for granted are no more?

• Do you want to know what I think about your notion of a providential God?

• What is your idea of a blessing? Let's compare notes and allow me to show you how far down the rabbit hole goes.

So, thank you, again, for taking the time to share in our lives this past week as we lived through the range of emotions and experiences of Boy Scout Camp. I am strengthened by your companionship on our family's journey.

When I get the chance to speak to students, educators or medical professionals, I try to explain what it means to live as if life is ready to swirl into a perfect storm. It may seem cliche, but it remains the best metaphor I have for sharing the turmoil of life with a child who has disabilities. Finances, marriage, employment, friends & family, faith - it all regularly gets thrown into turmoil around some issue that places your child in the eye of the storm.

If you know of a family who is also moving through life amid a perfect storm, please share this series with them. It might renew their hope in the future as it has for me. Or it might, simply, let them know they are not alone. And, if you are able to share with them any new insights it has provided you about how they might be moving through life, your words will come as a valued gift. Remember to use these words: "Is that how you might feel too? I guess I haven't known."

I don't know when I'll have such a series to share again, but I will continue to regularly post about our everyday lives. I look forward to "seeing" you whenever you come.


Stross Goes to Scout Camp: Day 1

Stross Goes to Scout Camp: Day 2

Stross Goes to Scout Camp: Day 3

Stross Goes to Scout Camp: Day 4

Stross Goes to Scout Camp: Day 5

Stross Goes to Scout Camp: Day 6
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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.


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Next: Stross Goes to Scout Camp: The Complete Series

Stross Goes to Scout Camp: Day 5 (in a series)

Boy Scout Camp – Day #5
Evening, Thursday, July 22, 2010

Before I could even think about checking in with Mark and Stross (what did parents do before cell phones?), I got a text from Stross: I am coming home

Coming home? This warranted a call to Mark. Yes, they were coming home after breakfast. It had stormed all night and the weather forecast said it was going to rain all day. That doesn’t work well for transporting the wheelchair from place to place, even when covered with a tarp in the back of the Gator. Also, getting back into their tent, the place Mark had determined as the best location to manage Stross’ medical cares, was messy in those rainy conditions. So, they were coming home for the day and night.


The weather was a bit of bad timing, in a way, for Mark and Stross finally seemed to have hit their stride yesterday. They had found a pattern of being, a way of existing at camp that was working. Stross had even conquered making a camp gadget, a project that would help him earn his way toward some badge or level that he wanted to attain.

But now weather was bringing them home. Them and the camp gadget. (Yes, that is the gadget in the photos.)

This video shows what happened after they pulled into the drive almost exactly at noon today. God, I was happy to see them. I knew Mark needed a good night’s sleep – heck, a good afternoon’s sleep too. And I knew it would be good to hear, in Stross’ words, all that he had been doing. His enthusiasm would be the affirmation I needed, reassuring me that all of this has been worth it.

And, as you’ll see and hear from Stross, the week is not over simply because they have to spend a dry Thursday night in their comfortable beds. No, the plan is to get back to camp early tomorrow. He is not going to miss Friday – especially Family Night and all that means.





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

Stross Goes to Scout Camp: Day 4 (in a series)

Boy Scout Camp – Day #4
10 p.m., Wednesday, July 21, 2010

The weather brought most of the state rain last night, so I began today checking in with Mark via text: Did you get sleep? His response: Yes, rain was quite soothing. I feel rested … a couple heavy moments, but nothing drastic.

I sure hope they are taking photos and remembering things to share when they get home. I haven’t really had time to learn details about all that Stross (with Mark) has been doing. I know he swam the perimeter of the pool; I know he earned his Totin’ Chip card granting him the right to carry and use wood tools; I know he has been learning to tie some knots; and I know he did something with a canoe, because when I texted Mark yesterday afternoon with a How r u today? I got back a one-word response: canoe. All those things sound so very Boy Scout; therefore, I am certain Stross is deliriously happy.

You see, Stross is a bit like Walter Mitty, the main character of a James Thurber story who escapes his dull-drum life by living amazing fantasies through his imagination. The difference with Stross is that he takes on a fantasy life that might be within his reach, if only. Or he lives in a fantasy life long enough to find parallels to his own. Fortunately for him, he experienced high school in the era of High School Musical. It is how he looked forward to and navigated things like prom. Then, whenever there actually was a musical being performed in high school, Stross tracked down a recording of whatever had been selected that year – Wizard of Oz, Oliver, Les Miserables, and Oklahoma – and then watched or listened to it over and over and over. By opening night, he knew nearly every lyric of every song and likely enjoyed performing on stage as a member of the chorus more than any other student in the cast.

Boy Scout Camp is proving to be no different. In the weeks – actually months – prior to camp, Stross began re-watching all the Disney movies about camp plus a few others. In fact, in the week just prior to camp, having exhausted all others, he watched Troop Beverly Hills (1989) starring Shelly Long multiple times. Somehow sensing that might not be regarded as something “cool” for a 19-year-old male to do, he watched it secretly using only his iPod. But I knew. And Mark knew. And Skye knew. We all know Stross pretty well.

I am thrilled that Stross is living his own cinema spectacular this week, but I wonder how close to his fantasy the week is turning out to be.

I am also grateful that this week has afforded me some Skye time. He has forever grown up in the muted darkness of Stross’ long and sometimes oppressive shadow. I could write a great deal about that. But not today.

Today, I’ll write that Skye and I walked downtown for a pancake breakfast at a local diner, something he usually does with Mark. And we truly enjoyed our time together. Makes me wish I hadn’t pulled away from our walk home to accomplish an errand. That side-trip resulted in an impromptu meeting. (Well, impromptu on my part. I am pretty sure the person who asked to talk with me had an agenda in mind.) That piece of spontaneity has pretty much ruined the balance of my day. Just when I was coming to a sense of peace about Scout camp, and just before Stross' call to tell me about the 5-mile hike he took today.

Me: “Wonderful, did you use the Gator or your wheelchair?”
Stross: “I walked.”
Me: Oh ... (thinking … “What?” … I’ll investigate that when he gets home.)

I would have loved to have fully enjoyed the call – to have listened longer to his news about smelling chocolate in the air of Waverly (courtesy of the Nestle/Carnation plant) and his plans for lunch at McDonalds (the reward at the end of his hike which, ironically, might be better for his diet than the lactose-laden fare of camp); for he sounded positively buoyant, even after expending 5-miles worth of energy on an early morning hike.

Unfortunately, his call came in the middle of that caught-me-by-surprise meeting. So I ended up apologizing, taking the call, and then answering, listening and experiencing the emotions of the moment in front of the other person. I had not wanted to taint the purity of the moments I would have with Stross on the phone, but I had not wanted to miss his call, either.

I guess it wasn’t all bad, for Stross’ joy – ever so briefly – offset the angst I was experiencing because of the meeting. The kind of angst that – if plotted on a pleasure continuum – would exist at the polar opposite of the pleasure I heard in Stross’ voice.

And you know what? Stross read my voice as well as I read his. For within minutes I got a text from Mark: Are u ok? Stross said you sounded like you might have been crying.

What an incredible son. What an incredible husband.

My text back: Long story. I’ll call soon to fill you in. Please don’t worry.

Mark might be experiencing a sense of peace today too; I don't want to be what ruins that even at a distance. But physical distance simply cannot dissolve emotional presence, can it? At least not during this week of Boy Scout Camp. At least not in our family.

Two short hours later our doorbell rang. It was a floral delivery person with a beautiful bouquet of yellow roses, burgundy mums, white Stargazer lilies, and some exotic green foliage I had never seen before. It seems there “ain’t no wilderness hike long enough, to keep them from getting to me, Babe!”

I am blessed, indeed.

Now, if the thunderstorms forecast for tonight would only dissipate – along with my lingering, frustrated anger leftover from that meeting today. But that’s not the way life works, is it? Storms thunder, rain pours, lightning strikes, and the best you hope for is a safe place to ride it out.

Just one more text to Mark before I go to bed: Don’t mess with lightning. Get to the van when u c or hear it.

Mark’s response: K, I love u.

I know.

Next: Stross Goes to Scout Camp: Day 5 (in a series) 

Stross Goes to Scout Camp: Day 3 (in a series)

Boy Scout Camp – Day #3
8 a.m., Tuesday, July 20, 2010
Staying awake until 2 a.m. sort of worked. The goal was to force myself to be so weary that I wouldn't worry anymore. Previous to Mark’s call last night, my mind was winding down from a day filled with homework for my masters level classes. My brain was weary. My body was tired. But after Mark’s call, everything in me began planning, organizing, looking for ways to help him out the best I could even from long distance.

Last night, I worked through my initial frustrations via a phone call to a good friend who knows how to listen. She doesn’t attempt to offer answers – or if she does, she apologizes with the disclaimer: “I know I don’t understand.” That is helpful. She also doesn’t get offended when I disagree with something she says about Stross or Mark. For example, when she tried to be encouraging – “You know that Stross is having the time of his life” – I felt comfortable suggesting an adjustment to her perception. It came by way of my response: “Without a doubt, but that doesn’t make it any easier on Mark. In fact, in many ways it makes it harder. That’s why Mark will stay there until the last medical supply is gone, the wheelchair is non-repairable, one of them becomes ill, or he simply cannot lift Stross any more.”

Damn it. That’s what makes Mark, Mark. That’s why Stross has room to dream. But why does it have to be so hard?

I know how it works. I know that Stross’ incessant, optimistic chatter about all things Boy Scouts will both grate on Mark and be the energy he needs to keep on going. It is a paradoxical existence that only those who dare to love Stross can understand. I’m not talking the casual “I love ice cream; I love Stross” kind of love. I’m talking full out agape, I’ll-go-wherever-Stross’-journey-is-heading kind of love. It isn’t for the weak of heart. And this week the journey goes straight through Boy Scout Camp.

Last night I also called my sister, Jill, to talk through plans for her to get me to family night on Friday. I can’t tell if it feels like it’s coming too soon or if it will never get here. For Mark’s sake, I’d love for family night to be tomorrow – tonight even. For my sake – selfishly – I’d love for it to linger in the distance. I need time to reconcile what is happening.

My intentionally timed conversation with Jill (i.e., calling while I was upset) was extra productive because her husband, Greg, is Stross’ Scoutmaster. It is why we decided it was worth it to drive him to another town for the meetings. We have a family member in the system who is able to help advocate too. Trouble is, sometimes we have a way of making things look so easy, that even family isn’t aware when accommodations are needed. So, I poured out my frustrations to Jill, who corresponded with Greg, who vowed to talk to Mark sometime this morning, and then help the camp’s directors better understand what might still need to be done.

Within an hour I got three texts back from her last night– each one providing a bit more breathing room. The first said Greg will address the shower issue today, the second offered the name of a friend who lived near the camp who could play courier should more medical supplies need to be delivered, and the third was an encouragement to:

Take a deep breath. Camp has a learning curve but Greg will help the process. Mark had told him of base [ostomy] issue, but not shower. Boy with CP may appreciate modified shower too.

You know, we get really tired of facilitating others’ learning curves. It has been two decades since I was one of the people who didn’t “get it.” I – Mark too – am getting weary of speaking up to help others understand what we need. It’s a delicate dance where you have to avoid resembling an overprotective parent or an angry, assertive advocate. That is not always easy through the pain.

But I shouldn’t complain too much. When we figured out the need for a Gator and how that would help Mark get Stross quickly around the huge camp while sparing his wheelchair from needless wear and tear, Scout Leader Dan volunteered to drive it over and back for us. He took time off from work to meet Mark at the rental place and fully took care of the Gator’s transportation for us. What a gift. The luxury of the Gator has been worth every dime of the more than $300 we spent. I can already tell that if camp becomes a regular occurrence, we just might need to make a Gator our second car.

There are more texts from Jill already this morning: one saying she reminded Greg to ask Mark if he needed him to run to town for Lactaid, one encouraging me to “hang in there and have faith,” and another stating: “Greg said Stross is having a great time & that other campers very accepting.”

Hmmm ... that last one is likely a matter of perspective that looks far different with a parent’s eyes.

I’m so conflicted about this week. Unlike Mark, I’m getting glimpses of what it’s like to not have Stross in the house. It is quiet. It is … open. My schedule isn’t dictated by the need to be near a bathroom that must be accessed at least every four hours.

But Mark is not getting that experience in negative portions. For all the freedom I’m feeling, he is experiencing two-fold oppression. He is Stross’ go-to guy 24-7 and in conditions that make grown men and women cringe and squirm simply from inconvenience. What Mark is doing to facilitate Stross’ participation means he must overcome inconvenience. It requires intentional ingenuity to overcome sometimes seemingly insurmountable situations. Like the time we – Mark and I – insisted on getting Stross down to a ruin at Mesa Verde National Park on his 13th birthday. Sure there were “accessible” ones on the surface of the mesa. But those aren’t the ones you see in photos. And we were on the vacation of a lifetime, courtesy of Mark’s mom and dad, so we needed the experience to be one that would last Stross’ lifetime.

We picked Spruce Tree House knowing there would be steps to navigate and paths that we technically weren’t advised to go on with a wheelchair because of the rate of incline and narrow passage. But we did it. And Stross got to see and be in a “real” Anasazi cliff dwelling. One that is actually in a cliff. And he had his photo taken with a Native American national park ranger (who was very surprised to see him there). And the ranger gave him a national park souvenir badge for his birthday, May 5th (a holy day for me). So, we did it. We made it happen for him – together: Mark, me, Skye, and even a grandpa and a grandma who likely thought we were crazy but quietly supported us anyway. And we all have wonderful memories because of it.

But Mark is alone with Stross at camp this week. There are others there. But no one who really knows or understands. And I feel so helpless. Very few understand like a parent does. Very few have the capacity to comprehend the selfless existence required. It’s an intense, angry, frustrated version of selflessness that informs you of how selfish you really are. But, damn it, you do it anyway because – in the end – you know that is what matters most. Your ability to facilitate your child’s happiness.


But it truly might be what kills you. Selflessness is stressful business.

That is why – even after keeping my mind busy until 2 a.m. last night – I cried after I crawled into bed. I thought I was done with tears, but I couldn’t stop thinking about Mark. In fact, as I type this in the first hours of a new day, I am crying again. God, I love him. I love them both. But I am loving Mark so much now that it hurts. It hurts to not be there to help be part of what might make things better.

He’s watching his son not be like the other boys.
He’s watching his son not understand like the other boys.
He’s watching the other boys stare at his Stross, perhaps even wondering why he came.
He’s realizing – again – how others cannot fully understand.
He’s feeling what it’s like when others are incapable of comprehending the magnitude of what must happen every single moment in order to make something close to “normal” happen for somebody else.

I know. I get it. But I am not there.

And I also know Mark doesn’t want to call and worry me. I know he wants me to enjoy my week of as-near-normalcy-as-possible. He would hate it that I stayed up until 2 a.m. last night and that I got up at 7:30 a.m. this morning just because I couldn’t make myself stay in bed any longer. I tried. But I kept thinking. So I decided to start typing instead.

I am looking forward to hearing how their day went today. Surely much, much better than yesterday. Greg will be talking to Mark. They will be problem-solving. The weather is fairly decent. Stross is getting to experience Scout camp. Surely the next time I hear from them I’ll learn about new knots tied or fires built or how the canoe trip they are to be on today went. All will be well. Yes?

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

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Boy Scout Camp – Morning Day #2
8:30 a.m., Monday, July 19, 2010

Evidently I can sleep 7 hours fairly well. I made myself stay in bed for another hour or two – just because.

I got a morning text from Mark. A response to my question about how things went last night.

Good night. We have owls at our campsite. They began swacking at each other at 3 a.m. Scared me to death. Stross slept straight through. We got up at 6 a.m., had pancakes. We are now learning how to tie knots.

I bet the pancakes are buttermilk. I hope the Lactaid works better at camp than it does at home when Stross sneaks a taste of buttermilk pancakes.

And did you notice? Mark used the term “scared to death” again. That makes me scared a bit too.

My response text: Sounds like scout camp to me.

And what about our scout? Stross, who has watched the entire civil war series Blue and the Gray many times and never missed greeting any military recruiter who visited his high school, had to be positively jubilant about waking up to the camp’s sound of reveille.

Go get, ‘em, Stross!


Boy Scout Camp – Night Day #2
9:30 p.m., Monday, July 19, 2010

There is a brand of grief that grabs you by the throat as if to say: “Not so fast. Your life will never be the same. Have you forgotten?”

I heard it in Mark’s voice tonight when he called at about 8:15 p.m. to … well … to hear my voice mostly, I think. He felt alone, and for the duration of our call, we had each other, and we were in that place again. A place we only get to through and because of Stross.

There was a practical reason for his call from Scout Camp. He thought he had left the extra boxes of Lactaid and extra boxes of ostomy wafers at home. He had. But I had noticed he had left them before they pulled out of the garage. Without Mark knowing, I had grabbed a purple canvas bag and tucked the stray supplies in there along with extra urine collection cups he had left out and two extra bottles of irrigation saline I wanted him to have – just in case.

And now here it was – only the second evening of their week away from home – and he needed the extras. While we were on the phone, he went back to our van and found them in the purple bag where I had put them. Mark must not have thought they were anything for camp since he didn’t remember putting that bag in the car.

On his way to the van, Mark told me he was “trying not to panic.” That if he could just find the extra supplies he needed, he thought that he (actually they – he and Stross) could make it through the rest of the week. But we both understand that the two-day pace they are setting with medical supplies needs to stop. Humidity, rain, water activities, and special dietary needs (lactose intolerance) are not kind to an ostomy. It won’t matter how many extra supplies you have. At some point, you won’t have extra skin, and at some point, you may begin to entertain extra germs. By then, the only way to fix the problem is to eliminate the conditions that are causing the problem. In this case: Boy Scout Camp. And that would break Stross' heart.

(Note: An ostomy is an opening for passage of stool created by affixing the end of the colon in the wall of a person’s abdomen, near his or her waistline. Stross has had one since the day of his birth because he was born with no anal opening. We have kept it rather than having doctors create an anus because it helps manage his incontinence.)

I wish I could be there to help, even if Mark would fight against my brand of helping: avoidance. Unlike Mark, I would not hesitate to explain to Stross why something might not be possible – in the kindest of terms. That’s not always how I do it. My other brand of helping finds me at my best while others might perceive that I am acting at my worst, for I can become a fierce accommodation advocate and insist that everyone make an accommodation happen that they might not believe necessary – or possible. In contrast, Mark’s version of accommodation advocacy finds him single-handedly obliterating all obstacles that might be in the way (including people sometimes by his tone of voice). He either makes something happen or goes down trying. He is a rock; he is an island.

Come to think of it, I guess we are more alike as advocates than I realized. I might go down in the process, too. I will just do it by alienating those who perceive me to be steamrolling over them. But, hey, Stross’ happiness is at stake.

Oh, Mark. Oh, me.

Mark cried on the phone tonight; God, I felt helpless. Other than when he spoke his marriage vows to me, the only times I remember seeing Mark cry have been connected to Stross either directly, like tonight, or indirectly, like when he pushes himself to the edge of physical depression by forcing life to be as “not special” as possible. A person can only obliterate obstacles single-handedly for so long before it wears him down. Then he can cry and begin to take on the world again, reassured I’m still by his side. He can’t get rid of me that easy.

We connected on an intangible level tonight, even long distance, like we have done so many times before – Mark grieving in intense portions, proportionate to the difficult physical and emotional demands of Stross’ life at camp, and me grieving in muted response to Mark’s pain. I knew I needed to be his stalwart support even if it meant I would need to call a friend later and pour out my heart in sad frustration mixed with chronic loneliness.

Loneliness. Mark and I know it well. This existence we live as parents others regard as “special,” as in “special needs.” Only the term “special” is such a misnomer, for this brand of special means “set apart,” yes, but not in any good way. Extraordinary? Yes. That one applies if it means “extra ordinary.” Being Stross’ parent means extra work, extra money, extra physical demands, extra stress, extra pain and extra heartache. That’s a lot of extra ordinary stuff. How extraordinary, huh.

Many people – others who do not intimately know this special existence – like to think that the blessings that come from such a special existence outweigh all the extra … crap. And, when you are at your extra best as an extra special parent, it does. It really does. But that level of spiritual awareness is difficult work. Painful work. It’s a working through with fear and trembling, even anger and despair. And you get to God know in a way that is so intimate, you don’t recognize God the way others present God anymore. When they talk about God, you wonder how they can be talking about the same God.

Divinity – in all its messy, dynamic, peace-filled, miraculousness – is real. But God doesn’t hand out passes that allow you to skip to life’s bonus spaces. Extra-ordinary living requires a conscious choice to be your best version of yourself for all the right reasons. It is a constant self-assessment: I am doing this, but for what?

This week, for Mark, it is so Stross can be a Boy Scout. To feel what it is like to do things that a Boy Scout can do – and if not all the things, as many things as possible. Yes, there are camps – special camps – that you can send special children to. And it is a bit easier for the parents there because everything is so specially different that you swallow the grief of your extra-ordinariness in one big pill rather than over and over and over again in small, excruciating doses.

Hmmmmmm…

I have an idea. I have things to do tonight. I think I can help long-distance. First thing, I have to text Mark before he tries to fall asleep. The pain I heard most strongly had little to do with medical supplies. It had to do with Stross, our boy/man, not being like the other scouts and the other scouts not knowing how to talk to or interact with Stross. Yes, that is a “normal” part of boys being boys. But it isn’t normal in our realm of existence. There is no way to accommodate for that. You cannot steamroll children into interacting with your child. You just have to pray that one or more of them – eventually – gets it.

Mark needs printed words that he can look at more than once – whenever he might need them. He needs a text message. Or maybe I need to send one.

I don’t think the grief will ever go away for good. So sorry u are in the thick of it – being reminded of all that is different about our lives. I hope u can keep seeing it thru Stross. He’s got it going on. I love u so much it hurts. Sleep well. 

Next: Stross Goes to Scout Camp: Day 3  (in a series) 

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)

Stay tuned . . . A Boy Scout special: "Helplessness"

I have decided the way I am going to deal with my feelings of helplessness - as they relate to Boy Scout Camp - is to write my way through it. That means next week you can choose to live my daily angst - if you want to.

In fact, I even have a preview for you - an excerpt of what is to come, if you will.

'... Mark will stay there until the last medical supply is gone, the wheelchair is non-repairable, one of them becomes ill, or he simply cannot lift Stross any more.'

Damn it. That’s what makes Mark, Mark. That’s why Stross has room to dream. But why does it have to be so hard?

I know how it works. I know that Stross’ incessant, optimistic chatter about all things Boy Scouts will both grate on Mark and be the energy he needs to keep on going. It’s a paradoxical existence that only those who dare to love Stross can understand. I’m not talking the casual “I love ice cream; I love Stross” kind of love. I’m talking full out agape, I’ll-go-wherever-Stross’-journey-is-heading kind of love. It isn’t for the weak of heart. And this week the journey goes straight through Boy Scout Camp.

Agh! It's one of those times again. Can you tell? A working in, through, out and over all things seemingly insurmountable. A spiritual shaping that requires blocking out those who don't get it while laser focusing on One who does. And the happiest kid (excuse me) - 19-year-old man - wearing a Boy Scout uniform is the most capable of leading the way.

So that is what I will be what I blogging about this week but posting next week if all goes as planned - or probably even if it doesn't.

Dear God ... maybe if Mark can get Stross through a week of camp, our family can get Stross to Europe one day.

Woah ... Where did that come from? That was wayyy to big to think about right now.

I've gotta go sing some Broadway tunes or something.