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?
