May 9, 2014
The Mile Run…and Longer Distance Events
Charlotte has qualified to do the mile-run race at the high school track. All kids who ran the mile in under ten minutes will be bussed from the elementary to the high school in a few weeks. The top six girls in each grade will get an award. Charlotte wanted her father to come to the track and see how fast she could run it.
I have been her running partner for months now. It was windy as we stretched and warmed up at the track, Charlotte bouncing the soles of her brand-new shoes on the spongy red of the track. Our hair whipped around our heads, both of us having forgotten hair ties. Daniel held the stopwatch, James gave the enthusiastic order to go, and we were off!
She took off strong, as she always does. By the third lap, she was flagging pretty bad.
“I don’t want to do this. I’m stopping,” she whined.
“I’m quitting,” she huffed, breathless.
“Whatever you do, don’t walk. You can run slow, but then why not run fast?”
She sped up, whimpering all the way. By the last lap, she was openly crying.
“I have a cramp! I’m stopping.”
“Whatever it is, Charlotte, we can fix it when we’re done.”
“How??” Her breath was coming fast and ragged.
“Don’t worry, what’s the difference between now and a half lap? Just keep running. We’ll fix it!”
She kept running. She beat her time by one second at 9 minutes 29 seconds. She flopped on the grass.
“What about my cramp? You said you’d fix it.” She was all smiles.
“Yeah. Lie there. That’s fixing it. See? Easy peasy.”
We guzzled water and her mood lifted to giddy heights, her tears and cramp not even a
memory. Never happened.
James ambled over, tottering on the uneven grass clumps of the field inside the track.
“I wan to wun dee my-ooh.”
“Are you sure, James? A whole mile?”
We explained to him that it was four whole laps. Big laps. He said he wanted to do it. Daniel and I met eyes, both of us realizing that this could take a really long time. And it could turn into an ordeal. We did stretches; he taught me a few new ones he has learned at PT. Then we stood on the starting line, the great big “1” bigger than both our heads put together. Thank God for large fonts wherever we may find them.
Daniel hit the stopwatch and we set off. I held his hand, a human shock absorber (and training wheel) to absorb the teetering and swaying of his gait. He nearly fell several times, but I held fast. He recovered and didn’t breathe a word of discouragement. Just got right back on track. We rounded the end of the first lap and he gave it a boost for the last few strides.
Daniel and Charlotte congratulated him – “under 14 minutes! That’s fast!”
He was elated. He hit the water bottle with gusto. I had heard some rasping in his breathing. Maybe he was coming down with a cold.
“Are we done, James?” I half-hoped he would think one lap (one-quarter mile) was enough.
“No, I wan to teep doh-een.”
“OK, you can keep going. One down, three laps to go.”
Daniel and Charlotte left early as we took off on our second lap. He didn’t falter this time. Our pace was slow enough that I had time to notice all the worms on the track that had fried in the sun. Hundreds of them every few yards, now that I noticed. James kept on.
We finished our second lap. Drank water and lay in the sun.
“Tot a doo duh duh.”
“Tot a doo duh duh.”
Sigh. “What?” I spent the next two or three minutes mystified by what he could be saying.
“You know, wight on duh fawm…”
He was waking me up for lap three. We hit the track and his marionette body flopped on around the oval, never seeming to tire too much. Each lap was about 14 minutes. We celebrated every time. Before the last one, I could tell he was worn out, his cheeks flushed and hair stuck high with sweat. Was he sure he wanted to do it?
“(Sigh) Whah not?” was his simple reply.
When he finished the mile, the first thing he wanted to do was call his father. We did, telling him and Charlotte that he did each lap in 16 minutes. His sister whooped with joy over his accomplishment and so did his dad.
That night, Charlotte agreed to sleep in James’s bed. This is an unusual honor for James—he’d sleep with her every night if he could, he adores her so. It was a school night but, for some reason, I decided to let it go. They were so cuddly and happy together.
Charlotte beckoned me with a finger to get very close so James couldn’t hear.
“I’m so proud of James for running the mile laps in 16 minutes.”
“Well, why don’t you tell him that?”
“I can’t. If I do, I’ll start to cry.”
She wanted to talk to me privately, so we sat on the bed in the quiet of my room, locking the door so James wouldn’t disturb us.
“Mommy, I’m scared of something.”
This is not unusual. I just waited to hear what the fear was this time.
“Is James gonna die?”
Her face went red and her tears were little streams finding new valleys in her soft skin as she buried her face in her hands.
I thought back to a conversation Daniel and I had had in the car earlier on the way to the track. A well-meaning man had told Daniel about a boy he knew with Downs who was not supposed to live past 13 but was now in his 50s.
“I don’t worry about that stuff anymore,” is what Daniel told me he had said to the man.
Charlotte had probably heard every word.
I didn’t feel I could lie to her. At some point, we have to be honest. James has a probable diagnosis of mitochondrial disease, which can carry a shorter life expectancy.
“We don’t know what James has, honey. The doctors just don’t know.”
She whimpered, curling into a corner of my bedspread.
“Well, sometimes the doctors tell us diseases that kids have, diseases they think James might have, and sometimes those kids get sick.”
She collapsed with anguish, rolling onto her side as new tears rolled down her neck.
“Oh, now I’ve made it worse.” I regrouped.
“Listen, the doctors tell us this—whenever they see James, they say they’re so happy to see him because he is not really getting much worse. They are so used to seeing really sick kids at that hospital, with tubes in their bodies for feeding and kids who can’t breathe well or even walk. And every time they see James he gets better at using his body.”
She was curled in on herself now, rocking back and forth on her knees, listening.
“I mean, his vision has gotten a little worse and his hearing…”
“So he is doing great and the doctors are so happy about that. But more importantly, Charlotte, you are the best sister to him. Not only are you sweet and kind but you also call him names and slam the door in his face and say he’s annoying. That’s what real sisters do! Half the time you hate him, half the time you love him.”
She ventured to look up at me, her hands wet with tears.
“And you know…he adores you. You know that, right? Even when he’s mad and screaming at you, he still adores you, whether he knows it or not.”
Charlotte broke into a smile, her dimples deep, her eyes shining with forgotten tears.
“You know what’s funny?” she said. “He’ll scream at me, ‘I’m never playing with you again, Charlotte!’ And all I have to say is, ‘James, want to play a game?’ And right away, he goes, ‘Yeah.’”
She bubbled with the sweet mischief of it, of taking advantage of his complete lack of guile to trick him. Of course she wouldn’t play the game with him at that moment. That’s not something a real sister would do.
In the next moment, she was crying again.
“What is it now?” I asked, stunned at the rapid mood shift.
“I’m afraid I’m gonna kill my guinea pig because—“ she choked through sobs, “I don’t always take care of him.”
I tried to console her but she was not to be consoled.
“I killed a guinea pig already. Buster!”
I had forgotten about that. Years ago, we had been watching some guinea pigs for Daniel’s class and the babysitter had seen her shake the animal hard—too hard? She wasn’t sure—and then the animal was limp. We have told her before the animal was probably sick but she never bought it.
I crawled across the bed and wrapped an arm around her. She was older now.
“Charlotte, even if you did kill it, you have to forgive yourself for that. You will do much worse things in your life and you’ll have to forgive yourself for those things too.”
I didn’t realize it at the time, but now I do. Deep down, I know she wasn’t crying about the guinea pig that went limp in her hands. She was crying about the brother she shared a womb with. It’s about knowing she was born healthy, with all the working limbs and organs and he was not. She runs the mile in under ten minutes and his PE teacher didn’t even ask James to try. She is the survivor and he may very well not survive. She carries that with her and she is growing old enough to realize the huge implications of disease and to fear a future without him.
I can’t lie to her about this—it is only speculation but it is our reality as a family. The irony is, he will be the last to know because he has not grasped enough to ask the question that she did. That is just as well. He runs slower and I see all the flattened worms that sizzled on the track at seven this morning. He didn’t see the worms at all. He saw the finish line, that great big fantastic “1” in font large enough for God himself to see from on high. I would like to train myself to hold my head high, as high as he does, and not see the worms scattering under the soles of our feet.
“It is not a race!,” I yell to James over and over again when he tries to beat his sister to the door or the car. Life is not a race or a contest and just because you finish early in this life doesn’t mean you finish last. It’s how you play the game. Take a break in between laps. Whatever’s wrong, lying down in the grass and waiting just might fix it. Tell each other how proud you are. Forgive yourself. Easy peasy.