Tuesday, May 14, 2013

Healing Naomi

When we moved in with Matt's parents in the summer of 2009, our family's diet went downhill right along with my morale. There were enough stresses with losing our jobs, losing our house, finishing a dissertation, and moving in with the in-laws, that cooking healthy meals for the family was honestly the last of my worries. When we lived at Cono, we ate two (relatively healthy) meals a day in the dining hall.  But starting the summer that we moved our diet became loaded with boxed mac and cheese, frozen pizzas, hamburger helper, chicken nuggets, and the like--if it was quick and cheap we ate it for over a year. What I didn't correlate at the time was how Naomi's health declined in perfect parallel with our diet.

Her social skills (which had always been a struggle) took a nose dive, she had a sudden spike in horrific temper tantrums, she had trouble at school and needed constant discipline at home. She had a lot of stomach aches. Nine months later she began to be plagued by joint pain and headaches. In September of 2010 Naomi was diagnosed with Celiac disease and we pulled all gluten from her diet. We also pulled dairy in the hopes that it would help as well. Naomi improved in many ways after these changes: the stomach aches lessened and her energy rebounded. But in many ways she grew worse.

The tantrums grew so severe that dealing with the hour-long fits of rage multiple times a day nearly consumed us. She would scream with such force that she burst tiny blood vessels in her face, she would spit and foam at the mouth, she would break items--all this even though we had never, ever, given into a tantrum in her life. We consistently and firmly disciplined the behavior, but it did no good. Her first grade teacher was at a loss. Naomi was brilliantly smart and enrolled in their high-achievment classes, but she refused to participate. She caused disruptions in the classroom by constantly kicking her legs into desks while she worked, not cooperating with transitions between subjects, and even physically fighting with other kids. Matt and I were told that we might have to sign a release for Naomi to be physically restrained if she posed a danger to herself or others.

I felt like we were losing her. She had two completely opposite sides to her: the very sweet, very bright, very eager to please side--which we were seeing less and less of; and the other scary girl who would suddenly take over her body and seemingly cause behaviors beyond her control. When the scary child would finally fade away I would find myself staring into the face of a six year old girl with dark circles under her eyes, bright reds specks from burst blood vessels all over her face, and eyes full of weariness and remorse. She never could remember much of what had happened, only that she hated it as much as we did, but she was powerless to stop it.

In January of 2011 when we moved into our own house, we pulled Naomi from public school and began to homeschool her. This was an incredible relief to Naomi and brought much behavior improvement, but the joint pains and headaches became nearly debilitating. She cried daily in pain, avoided the stairs, avoided active play, and buried herself in books. In May 2011 her formerly benign heart murmur worsened and her mitral valve began leaking. What I didn't know then was that Naomi showed many signs of chronic inflammation. But I did finally draw the connection between birthday parties and an intense worsening of all of Naomi's symptoms. The cakes were already gluten and dairy free, so I pinpointed the culprit as the huge amounts of food dyes in the frosting. When we pulled all food dyes from Naomi's diet (strawberry Nesquick and "fruit" snacks were two big sources) the headaches and joint pain disappeared almost completely within two days. It felt like a miracle. But even more miraculously the temper tantrums vanished as well.

Within two days of pulling food dyes our daughter returned to us: attentive, affectionate, eager to please. Two years later I can still affirm: if we keep her diet free of gluten, dairy, food dyes (and other foods with high phenol content), and most preservatives, she remains a "healthy" eight-year-old girl. And if she accidentally gets a dose of any of these things, we can tell almost immediately.

Now here is more wonderful news for Naomi, just in from the cardiologist this morning: remember that heart valve that had begun leaking? It's not leaking anymore! He can't say why it started leaking. "The leaflets of the valves look normal," he had told me. And he can't say why it stopped leaking, just that it's good news and we don't need to see him anymore. I think I can tell you why though: chronic inflammation can cause heart valve damage, and resolving that inflammation can allow the valve to heal. Here's a link to a Wall Street Journal article that is a great read on this subject.

Why do I blog about this? Because I want you to celebrate with me. Naomi is healing! She will not heal from her kidney and liver disease, which is caused by a genetic mutation, but she is healing from all the assaults of her environment that have added insult to injury in her young body. But I also want you to share this information: there are many, many children who, for whatever reason are very sensitive to the foods they eat.

Do you know other parents who are struggling with children who have chronic pain and wild tantrums? Tell them that diet changes can help. Many parents of children with ADHD, Autism, and other psychiatric diagnoses swear that diet changes resolve symptoms. Lastly, if you see a child throwing wild, out of control tantrums in public, who is far beyond the normal age for tantrums, please don't assume you are witnessing the results of bad parenting. Sadly, it is more and more common now for children to have physiological, neurological breakdowns due to food toxicity, and it is safest for you to assume you are witnessing this kind of meltdown. Be informed, be part of the solution. Kids are what they eat. Some just show us in a more obvious way.

Today I feel encouraged: it's worth it. All the months of special diet shopping, and special diet planning, and special diet cooking are worth it. Naomi is pain free, she is pleasant, and beautiful, and her heart doesn't leak anymore. It's worth it.

Thursday, May 2, 2013

Fresh Air

The fatigue had crept over me so subtly I hadn't realized how bad it had become, only that I longed to sit at my computer, and that it was taking more and more coffee just to get me through each day's basic chores. Sometimes when you have been tired for so long you forget what tired feels like, you forget how to shut down, relax, take a nap, or smell a flower, but you don't realize that you've forgotten. I began coaching myself on, bribing myself, "Come on, Kathy! Get up and do one load of laundry and then you can sit down again with a cup of coffee." I was secretly happy that the winter weather hung on so long, because I felt exhausted just thinking about spring time. How in the world could I handle taking the kids swimming and biking and to all the other outdoor activities that warm weather required when I was barely keeping it together sitting in the house day after day? Then there came a point where the coaching and the coaxing couldn't make this body go any longer, when I was just done.

I haven't blogged in a month because I've been so busy, but it has been a very different kind of busy than the previous year--I have been busy healing. This month I have been busy having surgery to remove an inflamed gallbladder with gallstones, and healing from the surgery. But even more, I have been busy reassessing my life--my daily habits, my priorities, my goals. I have been busy letting other people take care of me, remembering how to relax and renew my spirit, remembering the joys and the goals and the passions I had before I had five children, and trying to find ways to incorporate all these into my life now. Thanks to the generosity of my parents, my husband, my neighbors, and my friends, I have been taking naps, visiting coffee shops, reading good books, shopping for new clothes (yay for Goodwill!), going for long walks outside by myself, and even going on a few dates with Matt.

People have been asking how I've been doing. The first week after surgery was really rough. The pain was not so much a problem as the nausea and the burden of wondering if I had done the right thing. But slowly I began to feel better, the nausea left and I told people, "At least I'm not any worse than before surgery."

Two weeks after surgery I had a few days where I felt like I might have some extra energy, but they were always followed by more tired days. The chest pains and nausea finally stopped completely. I dared to hope then that I was on the right path.

Now, just over three weeks from surgery I can announce (knock on wood here) that I am feeling much better! If I get nine consecutive hours of sleep per night (and it has to be nine, eight doesn't cut it yet) I can actually wake up feeling well rested--a feeling I had almost forgotten entirely. I feel ambitious, like I want to paint the ugly back door, and clean the minivan, and scrub the shower, and cut Toby's hair all before lunch. Of course, making breakfast, getting a shower, and keeping Elijah from killing himself is usually more than enough to fill the morning, but at least I finally feel energetic doing those things. I have actually had mornings where I got all those things done and then realized I hadn't even thought about drinking coffee.

Two days ago, when the warm weather swept in. I spent the morning removing storm windows and putting up screens. I took the window insert out of our back storm door and fastened the ghetto screen insert in place. I duct taped the loose edges and the holes to move it from the "ghetto" category to "redneck"quality and felt pretty good about my achievements as the warm breeze swept in through the few remaining porous surfaces. But yesterday I got even more ambitious. Matt offered to clean up from dinner and put the kids to bed! (!!!) So I ripped that screen door back off the frame, and I got out my hammer, pliers, screwdrivers, wallet, and car keys. Two trips to Menards later, I had all the supplies I needed to improve that screen door ("fix"would probably too generous a word for what I did). I spent three hours plying all the tack strips off the edges of the frame, ripping up the old screen, pulling out at least fifty tiny rusty nails, stretching the new screen, and tacking everything back in place, but by 10:30pm our screen door had been promoted from "redneck" to "country-bumpkin," a category with which I am much more comfortable. And it felt good. It felt good to be outside, to be productive, and to use my mind and my hands for more than the daily grind of keeping everyone alive.

Today I feel bright and ambitious again. I made a huge pot of baked beans, put a roast and potatoes in the crock-pot, cleaned the kitchen, and kept Elijah off the kitchen table for an entire morning (with the last of those being by far the most challenging). I have big plans to cut the boys' hair, mow the lawn, finish switching out the fall to spring wardrobes and maybe even paint that country-bumpkin back door.

I have plans for this summer now too. I felt more excitement than dread when I went this week to sign the girls up for swimming lessons. I picked up a brochure at the Park and Rec office about local nature trails and took the kids for three long nature walks. We studied the signs of spring that we saw and wrote a poem about them, and I can't wait to go back again--after hair-cuts and lawn-mowing and painting, of course.

It feels wonderful to feel much more like myself again. I can't say for sure how much of my recovery is due to gallbladder surgery and how much is due to the generosity of people around me who have helped to shoulder the burden for awhile and allow me to rest and re-prioritize. Whatever the case, I have a really long list of things I look forward to getting done today, and I can't wait to get out from behind this computer and get going. If you've prayed for me, thought of me, or helped me out this past month, thank you! Maybe I'll eventually have the energy to return the favor.