Mama Said Archives
Phineas was months old when that first weepy eczemic rash started creeping across his left cheek. After shunning the pediatrician’s recommendation of hydrocortisone cream, I put myself on a dairy-free, wheat-free, soy-free diet. I drank pure water, ate organic rice and heaping plates of salad in an effort to keep my breast milk allergen-free. Yet the rash continued to crawl across my son's beautiful face, cheek to cheek, chin to neck, taunting me, daring me, pushing me further in search of the ingested thing, the alternative literature claimed might be the cause.
For two years Phinny slept poorly and scratched consistently. Our only respite came in the moist summer months when his skin calmed down and we could, too. That is until the summer before his third birthday. The memory of it still steals my breath.
I don’t know if it was the pollen, the heat, or some lethal combination, but by the end of May we had a child with burning red cheeks and a body covered in raised blisters, bloody scratches and dry abraded white patches. And while eczema is not fatal, just a hard-to-solve allergy-based condition, it felt like it was killing me.
When I took him out to the playground he got stares and I got comments. Look at those rosy cheeks or is that a little sunburn? And instead of apologizing for my son’s skin, I wish now that I’d said things like, actually, he has a big bad horrible rash. When I’m not looking, he rubs his cheeks on the carpet until they turn bloody. All night he scratches even in his sleep, which means my husband and I don’t sleep, which means I really hate you for even bringing it up, you idiot. And speaking of skin problems, what’s that on your nose?
One night my husband went out and bought a tube of hydrocortisone. He threw it on the kitchen table, the proverbial gauntlet. But it felt to me like we’d be repressing something that needed to heal. I’d delivered him drug-free into the hands of birth center midwives. I’d breastfed him for two years and was raising him on whole foods. He hadn’t yet been vaccinated because I couldn’t bear to tinker with his perfect little immune system that had been visibly failing him since birth. So no way was I smearing that toxic cream on his face. I guess I won, if you call more stress and sleeplessness a victory.
When every other night it was my turn to sleep next to Phineas and hold his hands so he didn’t scratch, I used to get crazy exhausted in those late hours. I think that of all of the military’s inventive torture tactics, sleep deprivation has to be one of the most effective. Come four in the morning, I would blurt out my country’s secrets for a few uninterrupted hours of sleep. Hell, yeah. But often on those nights my mind would go to stranger places like creating the hierarchy of chronic childhood problems. There were severe things like Autism and Cerebral Palsy, and I knew parents who were struggling badly with both of those. No, thank you. I also had a friend in her thirties who on weekends was the sole caregiver of her brother with Downs Syndrome. At 29, he couldn’t shower, feed or even wipe himself. That seemed a category unto itself. Another friend I knew had a two-year-old daughter with a hemangioma, a bulbous blue-red birthmark that disfigured her nose. So let’s see, I’d think. Phinny’s skin looks almost as bad as that girl’s nose, but her problem is only skin deep and will be treated with laser surgery when she’s four. On the other hand, Phinny’s problem relates to allergies, could lead to asthma, so I guess we’re worse off, except that he isn’t actually disfigured. So maybe we’re somewhere between mild autism and a bad hemangioma.
On tough nights, I’d make deals with the Catholic God I knew growing up but had only turned to in recent years as a stopgap for other techniques. If you take away my son’s eczema, I’d tell God, I will spend all my free hours for the rest of my life doing volunteer work. Oh, and sorry about missing church for the last twenty-one years.
On the hellish nights, I had to keep myself from hurting my son, from holding his wrists just that much too tightly or slapping his hands when, for the 250th time, he turned and thrashed into me and tore at his neck, his cheeks, his feet, his knees, his torso. In the middle of a particularly sleepless cycle, I couldn’t take it anymore. I picked up his little body and tossed him hard to the other side of the bed. He woke up startled, crying, “Mama, What happened?” That’s when I realized I hated myself more than his skin.
When a god did appear that summer, he came in the form of a naturopathic doctor who heals with vitamins, herbs, diet. He would turn out to be a false god, but I didn’t know that then. Rather I took his protocol of primrose oil, vitamin E, flax oil, glutamine powder and a limited diet-- pretty much eliminating all the foods Phinny ate--for gospel. Phinny was two-and-a-half then and had never tasted fish or meat. We’d been a vegetarian household for five years. I’d been a vegan for twice that many. That night I went home and cooked a chicken.
Everything the doctor said confirmed my instinct. He agreed we were smart not to administer steroidal creams, because the disease needed to come out, and if, repressed, it would affect another organ in the body, most likely the lungs or liver. Furthermore, periods of heavy and prolonged steroidal use can cause thinning of the skin and possibly more severe problems like muscle weakness and retarded bone growth. He also saw the skin as the safest organ of expulsion. In other words, better this outside of the body than inside in the lungs.
After two months on the diet with the eczema sometimes waning, but mostly waxing, Phinny’s poor skin looked as raw as ever. We were going on three years of sleep deprivation, and our marriage was strained to the extent that it could shatter irreparably. We were so tired and so fragile that I finally capitulated as best I knew how. I dug through the medicine cabinet for that tube of hydrocortisone. I remember my tears falling on Phinny’s thin arm as I administered the cream to the seemingly countless patches assaulting his body. I remember pretending to reassure him as I whispered, “This will help, honey. You’re going to be okay. We’re going to be okay.”
But by then the joke was on us. Phinny’s skin was so out-of-control that the medicine couldn’t touch it. When we saw an allergist, and tried a 2.5% cortisone cream, it still did next to nothing. At most, it would ameliorate it for a day, but then a patch of eczema would appear on any nearby clear skin. A super-strength steroidal cream helped clear the eczema, but our celebration was short-lived. Phinny soon started wheezing, coughing. The pediatrician discussed treating him for asthma, and I still remember the ensuing argument with my husband. I insisted on stopping the steroids, but my husband wasn’t sure. We yelled, we cried and finally I screamed, “If you think it’s bad staying up all night with an itchy kid then try staying up with one that can’t breathe.” We tossed the cream to eliminate temptation, and the following weeks were wretched.
The eczema worsened to the point that we couldn’t put our boy in shorts or he’d take every chance to pick up plastic toys or handfuls of sand and rub them on his legs until they bled relief. The patches at his knees and elbows were thick and hard like rubber tires and when I bathed him, I would start weeping. Here was this beautiful, charming, even happy child with skin so unsightly that it hurt to look at it.
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I remember one afternoon when the heat and my frustration conspired to drive me over the brink and I brought Phinny to the town swimming-hole for some relief. He hadn’t been swimming all summer because the water dried his skin so badly, but the trip was as much for me as him. I tried to get him to keep his tee shirt on in the water, but he refused, pulling it off and baring a back and chest so replete with red, pimply bumps that almost every parent in sight found a reason to pull their child out of the water, obviously fearing that some dread disease was floating their way.
When a thoughtful-looking mother started to approach me, I turned away, swallowed back tears and joined Phinny in the water where we played by ourselves. Of course I didn’t blame the parents. A few years earlier, I would have done the same thing. In fact, I still might. But I secretly resented them because a trip to the swimming pond was just their good, summer fun, something they took for granted. They didn’t have to spend the whole time on scratch patrol, knowing the real fallout would come at night when, with extra-dry skin from soaking in the water, my boy’s maybe six crappy hours of sleep would dwindle to four. I resented them because their children had clear skin and they had no idea what it was like to look at a child’s afflicted body and just want to hit something.
On Sunday nights, my friend Lisa who didn’t have children would come over and sleep with Phinny to give us a break. My husband and I would go down in the basement and collapse on a musty futon while she stayed upstairs in our bed with our scratching son. It was the one night of the week I slept in the same bed as my husband. It didn’t even matter that many of those nights I would wake up sick with worry and not get back to sleep for hours. It was still one of the kindest things anyone has ever done for me.
If there was a wit’s end, we were at it. We’d tried oatmeal baths, we filed his nails to stubs, we dressed him in overpriced organic cotton, changed laundry detergents a dozen times, stopped using detergent altogether and still, always, the kid’s skin was a mess.
And even though that summer a new non-steroidal eczema cream had just been FDA approved, it came with many warnings, was known to have a burning effect in several cases, and scared me just as badly as the strong steroids. It was still an agent of repression rather than healing. My husband wanted to try it, but I held my ground. The doctor gave us a prescription—in case we changed our minds—and it stayed tacked to the kitchen bulletin board until the edges curled. I looked at it every day, sometimes fingered it for its promises and once actually carried it to CVS. When I tried to have it filled, the pharmacist told me the prescription had expired the week before and I’d have to get a new one from the doctor. I took it as a sign and went home instead with People Magazine and a candy bar.
They say the darkest hour is just before dawn and by the end of summer I think we were pretty much bumping around in pitch black. Then in October, the dawn came.
A friend had given me the name of a homeopath that had cured her daughter’s chronic ear infections. We had tried homeopathy a year earlier with a very well-known doctor, but it was costly and ultimately ineffective. The same went for acupuncture and Chinese herbs. But in those situations, we didn’t have Dr. Dan.
I came across his name and number in my desk, dialed in careless desperation and ending up having an unexpected twenty-minute conversation with him on the phone. A week later in his office, he did an extensive intake—three hours in our case—and sent us home with a chosen remedy in the form of sugary white pills. Phinny took them every day but his skin got worse. Although homeopathy is known to make some skin problems worse before they get better, Dr. Dan determined that this wasn’t the good kind of worse. He asked a lot more questions, gave us another remedy and within 24-hours, I was actually watching Phinny’s skin start to clear. As in before my eyes, I saw the red patches lighten.
I still remember how my breathing relaxed from discovering that tiny air pocket inside the suffocating experience of parenting a child with a chronic illness. And for the first time in months, I stopped shaking inside.
Phinny’s skin did not heal completely, but within a few weeks he was different, happier, so much less itchy. My husband and I were different, too. We got some sleep. We went on a date and laughed at the idea that we were laughing.
while I could tell there would be a day when the severity of the problem
at its worse would be something we almost couldn’t remember. Almost. I
still got scared. When I bathed my son, I marveled at the clear stretch of
torso and his soft strong hands, trying hard not to see any tiny bumps
that my eyes were trained to find. I would tell myself that whatever I
feared might be lurking beneath the surface just might just stay there.
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