Monday, March 7, 2016

Sleeping Beauty

Tanner's been sleeping. A lot.

For a few months now, Tan has been sleeping 18 to 20 hours a day, all hours of the day, day or night. Sleeping Beauty we're calling him. And if he's waiting on his princess in shining armor, Siri has apparently steered her in the wrong direction, because she hasn't arrived to wake him.

Sure wish she would. Because this big sleep has cost Tanner a lot.

Two weeks ago, I had the conversation I'd been dreading with Tanner's guidance counselor at school. The weeks and weeks of absences have become too long, and together with the missed credits of past semesters, there's no way he can begin to garner enough credit to finish high school this semester. We have to delay Tan's graduation until fall, with the hope that he'll have the energy to do summer school and take some additional courses online in the fall so he can graduate with a diploma.

Mike and I had worried we might be facing this eventuality so we began talking with Tanner a few months ago about the possibility of a delayed graduation, and how in the grand scheme, a few months extra of high school would eventually be just a blip on the radar. We discussed it with Tan a couple times and got him used to the idea, so if the decision came down he wouldn't be blindsided. I'm glad we took that approach because he wasn't blindsided. He was level headed and pragmatic and sought to reassure us that it was fine, it was no big deal, he understood.

I don't understand.

I don't understand why my sweet boy, who has been through so much and struggled so hard and overcome so many things, now has yet one more reminder of the cost of having chronic kidney disease. The cost of his body struggling to keep his kidneys functioning, at the expense of all other systems. Like the system, for instance, that supports consciousness.

Hyperfiltration is likely the culprit here. Tanner's docs believe he's probably been in hyperfiltration for at least a few years now. Simply put, his kidneys are sprinting, and they have been for a long time. When kidneys are diseased, sometimes they go into this overdrive state. You and I, who presumably have normally functioning kidneys, move along at a steady pace for most our lives, with our kidneys humming along at an equally steady pace that allows them to last the 80 or so years that the average American lives these days. Tan's kidneys, on the other hand, have been engaged in a breakneck sprint for a long time just to support basic functions like filtering his blood, his urine and every other substance that finds its way to these workhorse organs.

But we all know that sprinting can't be sustained for long. Think of the Olympic sprinter vs. the distance runner. Sprinters go all out for 100, 200 hundred yards then collapse; distance runners go for miles. Tan's kidneys have been sprinting for miles and miles and miles, for years.

And his body is tired.

His body is putting its energies toward keeping his kidneys functioning properly, and thankfully, they are. They're doing their job, for now. But with time, it seems, his body has gotten to the point that it's now saying, "OK, I can focus on Tan's kidneys, but that means there are other things I can't get to. Like sending energy to his limbs, keeping his blood pressure in check, and propping his eyes open. I can only do so much; and for now, his kidneys need me. Now back off and let me get back to work."

I understand this is the work his body has to do, and I'm grateful it's rallying to the degree it is. Very grateful.

But, I'm also so tired of the cost.

I'm tired of all that this disease has cost Tanner. Early on, Tanner had to let go of football and P.E. He'd just started wrestling when he had to undergo immunosuppressive treatment that wiped out his immune system, so he couldn't be in such close, sweaty contact or lose weight. When the steroid treatments caused muscle wasting, he couldn't climb stairs, let alone lift weights. In April, he was to perform at Carnegie Hall.  Carnegie Hall. Now, he won't. He has lost out on time with friends; countless family and social functions; and normal, regular, day-to-day living. For years.

We've been lucky to have so many wonderful teachers, administrators, friends and family on our side these past 8 years. People have known Tan's story and supported him and us.  It was alarming, therefore, to encounter a teacher recently who was speaking pretty flippantly and contemptuously about Tan in front of her class. Those who know me know I'm not an unreasonable person; I'm pretty even keeled. So I stayed kind and even keeled when I talked with the teacher. I tried to help her better understand Tan's condition; the fact that when he's not down for the count, he can look pretty darn healthy, so it's understandable she might be confused by looking at him to realize just how tenuous his situation can be at times.

She called into question a photo she'd seen of him with friends, because she hadn't seen him in school. I have a mother who worked for school districts for decades, so I absolutely understand and respect that such a scenario can raise eyebrows, what with all the hooky playing that goes on and whatnot.  I explained to the teacher the circumstances surrounding that photo: Tanner had gone to school on a Thursday morning, though he didn't feel well at all. He made it half a day, then he came home and went to bed, where he slept through until early Friday evening. He awoke, he ate and went back to bed until Saturday evening; ditto on Sunday. Come 5p on Sunday, he woke up, showered, went to a friend's house for an hour so he could be there when she opened a letter telling her where she would serve a volunteer mission for her church; a picture was snapped; he came home and went back to bed. And slept through till Monday evening.  The picture the teacher called out in front of the class represented one hour in a four day period that Tanner left our home.

To the degree I explained above, I get it. (I'm not too hot on the fact that she was discussing it with the whole class, but we'll just put a pin in that for now.)  She didn't know much of Tanner's back story. And, when Tan is well enough to go to school, or parties, or church, or friends' houses, he puts a great face on it. He has a fantastic attitude, doesn't talk about his situation much, and is generally, for lack of a better word, normal.  He doesn't always look like he's been hit by a truck. Thankfully, he doesn't always feel that way either. But a lot of the time he does.

Tan doesn't complain much to others, and he doesn't complain much to us. Which is why recently it broke my heart a little when he said kinda shamefacedly, "I know this might sound weird, but sometimes it sucks that I don't always look sick, because I think people who haven't known me as long kind of wonder."  And then he apologized, and said he didn't mean to sound like he was complaining.

Let me insert a note right here to say that Tanner is a real kid, and I'm a real mom, and we have plenty of real moments of typical, boneheaded behavior on both our parts. I'm not glorifying Tan; I want to flick him on the forehead plenty of times. But I'm telling you, on this count -- this huge count that has so much impact on so many facets of his life -- he is something else. He doesn't rage and he doesn't whine about his plight. I'd be fine if he did occasionally, but he doesn't.

And, normally, I don't carry on and whine about it, either. I do count my blessings. I am filled with gratitude that he's still here and in so many ways is doing so well. I do know that we have been abundantly blessed over and over again, and I continue to be sincerely grateful. I'm practical, I don't borrow trouble, I don't wallow.

But there are times when it just causes my heart to hurt. To physically, painfully, ache. Because my beautiful 18-year-old son is still sleeping while there is so much of life to be lived. And I want more for him than that. I want him to fall into bed exhausted because he stayed out way too late or played way too hard.  I want him to sleep too late on a Saturday because he's a lazy teenager, then I can get irritated because I need him to get his hiney out of bed to do chores.   I want life to tire him out, not a disease his body is fighting valiantly against.

I want him to get to be 18 -- outside, during the day, with friends, at school. I want him to not have to put on a brave face, be a great sport, reassure worried moms that he's ok.

Tomorrow I'll put my own brave face back on, and I'll put gratitude before sorrow. And instead of counting the cost, I'll again count our many, many blessings.

But for tonight, I'll brush the brow of my slumbering child, then climb into bed and again pray for a cure.

Sleep tight, Sleeping Beauty.

Dammit, Siri, get it together.

Love from the city,

1 comment:

  1. It has been a long hard road for Tanner and you all as well. I have always admired how you all have dwell with his disease. A teacher should always have their facts, before they react! Love you all always!!!