A Standing O

Posted on August 20, 2015

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Every once in a while I’ll deviate from my usual posts on either publishing, writing (mostly poetry) and politics, and write in a more purely personal vein. This is one of those deviations.

Most people have a pet cause, if not several (or many). Most of the times these causes are rooted in something deeply personal: a mother’s cancer, a spouse’s abuse, a sibling’s addiction, etc. Or from deeply held beliefs. There are thousands and thousands of causes — if not millions. All are worthy of being given what we can: time, money, effort. It helps define us as one of the few species that inhabit the Earth who will do things for others without having to garner individual gain. But then it makes us feel good to help others. Altruism, a noble concept. For others.

In this case, the others are my son and those who also suffer from an auto-immune condition called IgA nephropathy. In a nutshell, for a few people an antigen called IgA can damage the kidneys. For some of the people with IgAN this damage ultimately results in kidney failure and those people end up needing dialysis or a transplant. Our son was suspected to have this condition, but the prognosis was fairly rosy: it was highly unlikely that his IgAN would progress to end stage renal disease. However, that all changed this summer. The occasional bouts of gross hematuria (where there’s enough blood in the urine to color it dark or reddish), combined with increased protein in his urine and elevated blood pressure made a kidney biopsy imperative. Only through a biopsy could a diagnosis be definitive and a biopsy would reveal how damaged his kidneys are. His biopsy confirmed the IgAN diagnosis and revealed that his kidneys were starting to show signs of damage and scarring. At this point I need to note that IgAN has no cure. There are treatments that can put it into a sort of remission. The most common one is to prescribe hypertension meds to bring down blood pressure, and a regimen of prednisone, a steroid. So our son started steroids while in the hospital recovering from the biopsy. He had three massive doses of prednisone via IV over three days, and then started an oral course that normally should go for 6 weeks and then be tapered off. However, prednisone has some ugly side effects and our son started displaying them: heightened and erratic moods, greatly exaggerated anger, feelings of irreality, depression, insomnia and incredibly amplified appetite. His pediatric nephrologist decided that the benefits were not going to outweigh the side effects and started to wean him off the prednisone way early. In just about a week he’ll be off the steroids completely — ready (well, in his case, he’s never really ready) to start school. Luckily, the shortened course of steroids (and starting hypertension meds) seems to have had some good effects: his blood pressure is more normal, the color of his urine more normal, and it looks like there’s less protein in his urine. All signs point to a remission of sorts. I say of sorts because there’s no rhyme or reason with IgAN. He could have another flare up in three weeks, or three months, or three years, or fifteen years. The flareup could be worse, or less severe, than what he experienced this summer. There’s no definite predictor. And as we’ve learned there’s no cure. Right now his pediatric nephrologist wants him to see an adult nephrologist to see if there might be alternative treatments to steroids that he can be given when it flares up again. So we’ll wait on word on that.

When the tentative diagnosis was given about five years ago, he wasn’t happy about having to travel an hour each way to his pediatric nephrologist in Hartford once or twice a year. It was an inconvenience and since he felt ok and since he wasn’t feeling like he was dying, he felt it was a great imposition. When it became clear this summer that things were no longer quite right and this could be a serious threat to his health, his initial reaction was incredibly negative. In the face of weekly visits to Hartford, many blood and urine tests, a surgical biopsy, and what seemed like tons and tons of meds, he freaked. Even if all this helped him, he would not cooperate. But slowly after the initial shock wore off, he started coming round. He started to take an active interest in his health. He started to show strength.

Way back in September 2001, I stood over our son’s crib on the night of the 11th day that month before I went to bed, after a restless and relentlessly disturbing day, and did the closest this atheist could do to pray. I fervently wished that my two-year-old (at that time) would be safe all through his life, that violence of any sort should not touch him. A fervent wish for him to be safe. Now I jump ahead nigh 14 years to the present and know that safety is illusory. The violence that is touching our son comes from within his own body, and I am powerless to stop it. It’s not easy living knowing that you are essentially powerless, and it’s incredibly frightening. On one level, it’s a true miracle that we all can get up every morning and go our way in the face of so much that can go wrong, so much that can rise up against us — how illusory safety, and knowledge, are.

And here’s where my fear turns to respect and pride. Our son has not had the easiest ride on this planet so far. Oh, yes, there are children with far, far worse fates than his. But on the whole, there are many who are far, far more unscathed. The kids our son walks among are in the latter group. From day one, I think, he’s had to ask, “Why me?” Our son is adopted. From the time we got him, we never made that a secret. For his mom and I, a secret is something someone is ashamed about. And we are not ashamed about our son, and we are not ashamed he is in our lives. We wanted our son to know that we respected him enough to give him the truth. (Although he will throw this back in our faces about the terrible lies we told him about Santa Claus and the Easter Bunny.) But while secrets can be hard to live with, and even harder to live with once discovered, the truth is no picnic either. It’s never been easy for our son to live with the fact that his birth mother abandoned him in a hospital when he was a month old. He has no clue why, and that leads to wild speculation, and to feeling some sort of guilt. No matter how many times we tell him that his abandonment had really nothing to do with him, he still has that “unknown” staring him in the face. I know it’s not easy for him to live with not knowing why. I can see when that uncertainty engulfs him, and I am powerless in the face of it. All I can do is make sure he knows that the life-line is out there, that he just try to grab it before the flood carries him away.

I know that that very fact separates him from most of the rest of us — most of us who know where, and who, we came from. It’s a privilege having that information regardless of how heinous our birth families, or places, might be. But I am so proud of each day that he lives with that uncertainty, without knowing, and with knowing his difference.

But that’s not all that’s stacked against him. Here, we point back to his body. Our son also has ADHD, and dyslexia. Growing up in rural Western Massachusetts, in our town the elementary school had only enough kids for one class per grade. It was easy for our son to stand out: he was the one who could not keep still, could not keep on task, did not think before opening his mouth or doing something — the noisy one, the one everyone pointed their fingers at. Couple his energy with a learning disability that made deciphering symbols (whether alphabetical or mathematical) difficult made him feel like the schooling system was rigged for other kids to succeed, but not him. For him, it meant not focusing on the thrill and joy of learning, but on trying to shed the pair of eyes assigned to shadow him. School never felt like a safe, welcoming space. For him, his body (and mind) were failing him.

And now, with the IgAN, there’s a new way his body is failing him. Coming back to this theme, it boggles my mind about how many things can go wrong, and by how much. How complex our bodies are and how many ways our bodies can fail us. How complex the social world is and how many ways things can get fucked up. How complex life is and what can go wrong — from an errant cosmic ray to a driver in the opposite lane falling asleep to a mad terrorist of any ilk. All of us are brave in keeping on. And some of us get a clearer picture of what can go wrong, how unsafe things can be.

And it’s unfair that our son has had to deal with things that many kids don’t have to deal with. But that’s life, and he’s coming to understand that. How to live with uncertainty, with what we don’t know, with our peril dancing in front of us. For that, I honor and respect our son for what he has faced in his short life, and what he will face. He has already had our love from day one. He strives to be normal knowing there is no normal. Yes, he can screw up like any other teenager. He’s not immune to being boneheaded. I will always have high expectations for him, and he knows that I get angry the most with him when he does not live up to expectations. But he is living up to expectations where it matters most — that he does not abandon himself, that he does not give up on himself. For that, I stand and applaud him.

And so back to our pet causes. My first cause is my family. And in my family my son. Right now there is no cure for IgAN, but if you want, consider a gift to these organizations that are working for a cure, or at least better treatments:

National Kidney Foundation
https://www.kidney.org/

IgA Nephropathy Foundation of America
http://www.iganephropathy.org/home.aspx

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