At breakfast the other day my 5-year-old came to the table with one of his books about outer space tucked under his arm and asked if we could all move to the moon for a week. And I looked at the dark circles under his eyes and the sores on his skin that never go away and, for a moment, I let myself wonder. If we lived on the moon, would things be different for him? Would he stop scratching his body at night until it bled? Could I stop slathering him in steroids that could permanently thin his skin to near translucence if I don’t stop using them?
When my husband noticed how flared our son’s skin was that morning he turned to me, panicked. I met my husband’s eyes, but I had nothing left to say.
Of course I know how it should be. My son shouldn’t have eczema, asthma and allergies. His body should fight to keep him safe. His skin should protect him. After all, skin is the center of touch; it helps us communicate our love. But from the beginning, his skin wasn’t silky smooth like other babies'; it bothered him and kept him up nights. By 4 months old he was managing to scratch at it so much that it cracked and grew staph. That’s when our pediatrician diagnosed him with eczema, also known as Atopic Dermatitis.
I did not want to medicate our new baby or put any chemicals on his skin. We had gotten through his older sister’s babyhood with only one course of antibiotics and a few baby aspirin. But because the usual baby lotions stung our son and the homeopathically formulated oils and tinctures I tried turned him bright red and bumpy, we had to settle on one of those viscous petroleum-based ointments. But, even with generous coatings of the gooey stuff, his eczema persisted.
And there was no pattern to it. Without warning his body, like an unstable solar system, would blaze into a meteor shower of bumps and splotches and scabs. From out of nowhere, bright pink welts would sear across his skin like burning asteroids. We never knew when or why a flare-up would occur.
I was a nursing mom and had already removed all foods with dairy and soy from my diet way back when he was a newborn because we had discovered the proteins in them chafed at his intestines and left blood in his diaper. He was so sensitive that at 4 weeks of age even trace amounts of dairy protein caused him to wince and double over in our arms.
At 9 months with his worsening eczema and recurring ear infections we turned again to food. After a blood draw and more than a dozen needles in his back for skin prick testing, his allergy assessment revealed that along with the soy and dairy, I also needed to eliminate wheat, eggs and nuts from my diet so he wouldn’t get them in my milk. It took me a moment to grasp all of this, but once I caught my breath, I dove in.
I gave away all of our wheat products and banished nuts and nut butters from my kitchen. I bought rice pasta in bulk and I served up pale gummy piles of it, bowl after bowl. I stocked up on Spelt flour and egg replacer and began converting every soy- and dairy-free recipe I had mastered into soy-dairy-wheat-egg-and-nut-free. Because there was so little my son and I could eat, we never left the house, even to go to a Gymboree class, without gobs of allergen-free food; I always had snacks and a full thermos packed up in the car — just in case. And I interrogated friends and restaurant chefs about every last ingredient like it was my job. I was on a mission.
It was a lot of work, but by the time he was a year, I had a system. And in a way, I was proud. I had seen my son suffering and had done whatever I needed to do to help him. I had taken his health into my hands and, finally, I was figuring it out. This, I believed, would heal his skin until it was silky and unbroken. It would stop all his ear infections and allow him to sleep at night. It would transform him into a regular baby.
It wasn’t until he was 18 months old that I found him listless and lying in his crib, gasping to inhale. His chest rose and fell sharply and the usually unnoticeable dip of his clavicle turned into a deep chasm as he struggled for breath. I picked him up and raced down the steps. My head was spinning. He had never had trouble breathing before. I buckled him into his car seat and as I drove, I ran down the list of everything I had fed him, of what he might have touched, of what anybody who had handled him that day might have touched, of what he could be having a reaction to.
When we got to the clinic the nurse whisked us to an exam room where the doctor placed a mask on his face and turned on a nebulizer. In that place where you know things before you know them, I had an inkling of what we were dealing with. But I didn’t say a word. In an effort to take up less space in that small room, to save all available air for my son, I was hardly breathing myself.
It was only when my son’s chest calmed and his clavicle returned to its normal shallow hollow that, in my smallest voice, I was able to ask, “Is this asthma?” His doctor looked at me and she paused before she answered. “Not necessarily,” she said. “Only if it happens several more times. Wait and see.”
None of the doctors we saw for help along the way -- the dermatologist, the allergist, the half-dozen naturopaths or our pediatrician -- actually alerted me that with my son’s eczema profile he had a 50 percent chance of developing asthma. And that’s what was happening. We had two more attacks that same summer before he turned 2 and then the asthma piece officially became true.
I still think about that. All these doctors knew it might be coming for us but didn’t tell me. Would I have wanted to know that about my baby or would it have unhinged me? Didn’t I at least deserve a warning, or were they granting me what peace they could for as long as they could out of kindness? And probably because they could see I was already losing some of my marbles.
But it didn’t really matter; I could not stop the train. It had gathered momentum when I wasn’t looking and was rumbling toward us, threatening to demolish what predictability I had achieved.
So what did I do? I decided to outrun it. I knew if I tried hard enough, if we saw enough different doctors, I could get everything right and stop my son’s body from hurting him. I tracked down studies, I pored over the Internet for information, and any time I met parents with kids like mine I asked questions and got physician referrals.
A new naturopath I booked my son an appointment with prescribed supplements to fortify his stomach lining, which she said would help heal his worsening skin. She also ordered another allergy test. When she got the results, she asked us to eliminate all gluten, beans, citrus and rice on top of the soy, dairy, wheat, eggs and nuts we’d already removed. I wasn’t sure what there was left for him to eat, especially if I took away rice. He was consuming his weight in it every week what with all the rice pasta, rice cakes, rice cereal, rice milk and just plain rice I fed him. He was pretty much made of rice by that point. But, I agreed to the plan. If this would heal him, of course I would try it.
I ditched all the rice products and the beans and stocked up on oat and corn. From then on our family drank oat milk and, for snacks, I baked homemade oat crackers. I transformed every dessert recipe I could get my hands on into gluten-dairy-soy-rice-egg-and-nut-free concoctions that sometimes were even good. I boiled up bags and bags of corn pasta, so electric yellow it hurt my eyes to look at it. Since we were sure he could eat meat and chicken, I cooked it up for almost all his meals. Now I never left the house without dual thermoses: one filled to its brim with corn pasta, the other piled high with meat.
But his skin still flared.
A friend of mine had sworn by a naturopath who did something called NAET. NAET therapy was supposed to help free the energy fields being blocked by the foods my son was allergic to. Each half-hour session the naturopath asked me to keep my 2 and a half year old still. With her eyes closed in concentration, so she could better receive messages from a higher power, she tapped tiny bottles of various food essences near his hips and head.
This did not work.
When our son was almost 3 years old we packed up the whole family and traveled to a hospital in Denver. He was the youngest kid in the outpatient eczema program. At least twice a day for nine days under a personal nurse’s guidance, we soaked him in hospital baths and coated him with steroid ointments and “wet wraps” which are wet pajamas covered by dry ones. On the easier days we got to go to asthma and eczema care classes while he went to art therapy or played chase with the big kids up and down the hall. On the tougher days we cuddled him through allergy tests, holding him as he underwent more blood draws and skin prick tests.
During our final three days there we held our breath through his eight food challenges. Remarkably, after the two-plus years I had spent removing things from his diet, he got the official all clear for everything formerly verboten except eggs and some nuts. I nearly collapsed with relief: It wasn’t the food. That night our whole family celebrated with a regular pasta dinner and regular ice cream. We were free!
We came home from Denver with a tricked-out medicine cabinet full of new ointments, new sleeping aids, a variety of fruit-flavored antihistamine syrups and a sense of hope. We had a top-of-the-line treatment plan and we had all the skills we needed. We knew when to soak him in bleach baths. How to choose the right steroid for each part of his body based on his skin breakdown and how to seal him up first in wet pajamas and then dry ones so his skin could heal while he slept. To keep him from scratching his body up at night we knew to shove his arms and legs into wet tube socks followed by dry ones. When he got big enough to be able to pull all the socks off, my husband and I had to duct tape them on.
I don’t want to give you the wrong idea; it wasn’t terrible all the time. Some days were better than others. Especially because when our son is in the right mood he can tell us about a hundred jokes from his Jokelpedia while we put his medicines on. Especially because he has so much to give. After all we ask of him he still jumps into my arms when he’s ready for bed and tells me he loves me more than all the atoms in all the planets in all the galaxies.
But it has never done our hearts good to yank wet pajamas onto our small bleach-scented kid as he shivers and bawls in our ear. Particularly because even after all the baths and so many medicines, his skin continued to break down.
Exhausted and worn out, my husband and I called a timeout from almost all of it. Our family needed to rest.
I am grateful to the surgeon who will patch up the hole in our son’s eardrum from all his infections, the doctors who check his lungs, and the hospital who nebulizes him when he can’t breathe, but I have no answers anymore.
Sometimes, in that irrationally hopeful way you check your pocket one more time for something you’ve lost even though you know it’s not there, we have our son give the gluten- and dairy-free diet a whirl. Or throw his arms and legs in wet socks again in the hopes it will stop him from scratching himself raw and crying for us at night.
Sure, we have all the tools, but now I see that nothing is going to improve anything for long. That is one of the hardest parts of all this: understanding that I don’t know how to fix this. That doing my best cannot actually change things for my son. For us, there is only treatment, and treatment is temporary.
Still, we have made it this far. Even when it hurts to look at him. Even when on a wet pajama night I’m tucking his warm blankets higher under his chin and he says, "Mom?" And just before he drifts off to sleep he asks, “Are you sorry I was born?” I can’t swallow past the rock in my throat. I wipe my tears and I gather him in my arms and I hold him. When I can speak I tell him how much I love him: more than all the atoms in all the stars and all the planets and all the dwarf planets in all the galaxies in the entire universe. I lay his head back down on his pillow and brush his hair off his forehead. "You're going to be OK,” I tell him.
I have learned to take what I can. To me happiness is when the skin on his back is smooth, when he hasn’t been to the doctor in a month. When he asks me to make him a paper airplane and I actually get it to fly and he says, “Good job, Mom” and hugs me before racing after it. When he can hardly finish the “aren’t you glad I didn’t say orange?” knock-knock joke because he’s laughing at it too hard himself. When he sleeps through the night.
And I have learned to be grateful for the calm. Even if that makes me like a predictable cartoon animal who keeps forgetting that at any moment a boulder could come whistling down from a great height and flatten me. What choice do I have, to go creeping along, cringing in fear of the next flare-up? What kind of life is that? I have to take the quiet moments when I can. These are the things I have been given.
But even on the hard days when I stare back at my husband with weary eyes because I feel like I’ve seen it all, there is a part of me, not too far from the surface, that is still trying to figure out what I can do to save my son from living like this, to protect him from all of it.
Even though I say I’m done believing, I am still holding out hope. I am still searching for the answer. And that will never go away.
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