Monday, July 26, 2010

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

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.


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) 


Kathy Douglass said...

Hi - This is Kathy Douglass, we met during the Hilary campaign. I recently found your blog through a mutual facebook friend, Yvonne Nutting. I am finding your tales from scout camp extremely moving and exciting. I don't want them to end. It's almost like reading a novel. I see from your introduction that was your intention and you have achieved it very well. Thanks for all your sharing. It brings me to tears.

Joy said...

Kathy! Of course, I remember you! Very glad Yvonne got you to the blog. Did she tell you there actually is a book? ;-) It is called "Involuntary Joy."

Thanks for letting me know that you are following along. It makes the sharing and airing of our family "yuck" worth it.