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Eat, Fly

By Maralise Petersen

My two and a half year-old “baby” doesn’t eat, at least not enough.

My son’s doctors diagnosed him with failure to thrive as an infant and since then with reflux, eosinophilic esophagitis, and now celiac. I grew up next to a family whose son was a failure to thrive baby. His name was Johnny and he died when he was six years old.

I almost daily sort the differences between Johnny’s situation and ours. I convince myself that medical technology is more advanced, that my son’s more recent diagnosis has to be the answer and “final” solution. But, sometimes, as I lie on the plateau of wakefulness before diving into sleep, I agonize that Johnny’s mom never knew why he wouldn’t eat, why he died. I torture myself with empathy for her failure, her sadness, her ineptness. And most of all, I hope that her fate is not mine.

I will never forget the day that my pediatrician told me my youngest was failing. I carried him out of the room in tears, wanting to protect his tiny frame, knowing that the diagnosis was a catch-all for any number of life-altering conditions. I looked at my husband in desparation. And now, two years later we’re still running on the same treadmill of doctor’s appointments and forced feedings, desperately trying to turn him around in his car seat, and now trying to beef up his 22 pound body.

Johnny’s family fades in and out of my consciousness as we move forward with life after chronic illness. Sometimes I think of Johnny’s mother patiently trying to get him to drink a bottle for hours on end. Sometimes I think of the physical loss they must have felt, and more hauntingly, of the emotional one. I try to turn those scary thoughts into the positive things that I KNOW about my son and his future. But it’s hard when every morning, noon, and eve I fight to get him to eat. I find answers. I find doctors. I find more problems. And although I have hope for my son’s continued growth, Johnny’s ghost is ever-present at our dinner table.

My mom only uses one expression to describe Johnny: bird-like. I often check my son for resemblance to that description. And you know what? Maybe bird-like isn’t so bad after all. Because if we lose our struggle, at least he can fly.

About Maralise Petersen

(Emerita)

14 thoughts on “Eat, Fly”

  1. Is going through this easier or harder because of Johnny? Would being in the dark be better? Or does having that experience in the bank help you through this one?

    I know I can't speak with authority because I don't know this kind of pain. I only know you've been in my prayers, and I know the Lord is aware of you.

    Sometimes rationality just doesn't pan out. Sometimes it makes things worse. Sometimes coming from emotion and feeling are all that are sustainable. Grab what you need and keep moving. Much love.

    Reply
  2. Sniff. Sigh.

    Little Grey is so darling.

    I remember holding him on my hip and thinking that he felt nearly weightless. Thomas on my lap right now weighs 22 lbs.

    I remember Grey searching for a glimpse of you through the front window. He loves you so much. You have fed him well.

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  3. Adversity is a funny thing. You tend to think of it as a discreet event, something that happens, something you grit your teeth and get through, and then it's over, and you can bear your testimony on Fast Sunday about how it changed you.

    Or–

    It can be an ongoing struggle that you live with, day in and day out, a spectre that follows you. Sometimes it almost feels like a companion, a faithful dog that you can almost forget about. And then it taps you on the shoulder and you have to face it again and you think, 'Oh, you again. Shouldn't you have left by now?' There is no way that things like this are not wearing to the soul, and situations like this give an all new meaning to endurance.

    So we endure, and you pick out things you think your bird will eat, because you have no other choice. And because you love him more than you ever thought possible. And because mothers take care of their children, no matter what.

    And you pray for the best and hope that you are strong enough to accept God's will.

    Your son is sure lucky to have a mom like you.

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  4. Justine–Ahhh…ignorance is bliss, yes? This would be much easier if I didn't wonder so often about Johnny. My logical brain can reason that times are different, medical help is different, but there is a part of me that wonders why I had this contact. Was it preparation? Or coincidence? That's one of the reasons why I'm haunted by him.

    "Sometimes coming from emotion and feeling are all that are sustainable." Yes. That feels like what I'm doing.

    Kathy–motherly "feeding" is a concept I wanted to explore in this essay. How do we feed our children? And in absence of the physical, is there a replacement for that very real, life-sustaining support? There is so much about being a mom that revolves around actually feeding our children. So much identity ingrained in that one act. It's hard to figure out where our identity lies without it.

    Heather O.– On adversity: "It can be an ongoing struggle that you live with, day in and day out, a spectre that follows you. Sometimes it almost feels like a companion, a faithful dog that you can almost forget about. And then it taps you on the shoulder and you have to face it again and you think, ‘Oh, you again. Shouldn’t you have left by now?’" I love this description Heather. This wondering/waiting sadness has become a part of me, so much so that I can't imagine myself without it. It's something that I filter my life through. It has changed my perspective for good and bad, and for that, I am grateful and sad, all at the same time.

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  5. I have a friend recently diagnosed with Celiac. She was angry, she grieved, and now she just eats the diet, with her gluten free cracker sitting on the sacrament tray in a cup next to all the bread.

    So I have learned a lot about Celiac, and what you can and can't eat, and we have cooked often for her. A diagnosis of celiac can feel like the end of the world, but truly it's not, once the adjustment is made. And it is lifesaving that they can diagnose it, since people used to eat all the time, and literally waste away, and nobody knew why. It makes ward parties a pain, though. 8)

    I don't know where you live, but several chain restaurants now offer gluten free alternatives. P.F.Changs, Chili's, and McDonald's are among them.

    Mcdonald's fries are gluten free, and most kids like them! Not the healthiest of choices, I know, but calories are calories. Also M&M Mcflurries, and Wendy's frosties. The rotisserie chickens at Costco are gluten free, and after you eat the chicken, the bones work well to make stock for soup.

    Also, I'm sure you've taken advantage of the websites out there for Celiac, and if you email companies, they will tell you if their products are gluten free (MCCormick spices are, Kraft products are good at knowing and telling you) Some companies won't guarantee it, just for liability issues, some will.

    Amy's frozen dinners are great, and label clearly, but I don't know if they appeal to a 2 and 1/2 year old.

    Good luck to you. The diet takes effect pretty quickly, so I hopw you see some serious growing soon.

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  6. I struggled with similar feelings when Don got sick, because the lyme attacked his digestive system early on. He isn't even a child, but it was so hard to see him loosing weight and to be not to be able to prepare him comfort foods. I hope the diet works and you are able to find those new ways to feed and comfort Grey.

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  7. Yes, we feed in so many ways. Always trying to give our children what they need. The challenge, of course, is that feeding takes two (unless the kid has an NG tube).

    I wondered for years why I got so ANGRY at my kids for having picky tastes and appetites (a completely benign ballgame, compared to yours, but here's my point–) I realized that offering food was so fundamental to my self-concept as a mother that I felt personally rejected when they rejected my food-offerings.

    I can only imagine the desperation when you can't cajole a child into accepting nourishment that he needs to stay alive. My heart goes out to you.

    I've often wished for a spiritual tube up my kids' noses–I could squirt anything I wanted up there.

    I could use it for spinach too.

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  8. Kathy–Often, it does feel personal, or more accurately, I make it personal.

    And, I'm sure that this only gets more difficult as they get older. More choices, more ways for us to feel guilty about our involvement in those choices. And although I don't feel like that's a healthy mind-set to have, I wonder if it's one all of us need "get over." Food is a beginning step to letting go of them, getting over our need to control, and instead, just let them be. Obviously, Grey's case is a bit different, but the principle applies to so many things.

    The Wiz–I'm so often tempted to just write "Wiz" but then it sounds like I'm referring to a bodily function. I'm sure you're so glad to have that out in cyber-space. Ugg..sorry. ANYWAY, thank you so much for the encouragement and ideas. I had heard about the McDonald's fries but not about the frozen dinners and the other gluten free restaurants/products. I don't feel like I need to reinvent the wheel, but it does seem that I need to know an overwhelming amount of information. So, any suggestions/insider tricks are welcome!

    Angie–I do feel that the "feeding" role applies not only to our children but also our hubbies. And yet, we have even less of an illusion of control with them…

    Reply
  9. I love the idea of a spiritual feeding tube, that's great.

    Well, since you said tips were OK, I have a few more. If your whole family is not going gluten free, buy star stickers (or circle stickers, or whatever you like). As you unload your groceries, stick a sticker on the ones that are gluten free. (like some cereals are, some are not. Dora stars cereal is. Your son might like that) That way, as you are going to cook dinner, or give him a snack, you don't have to remember which chips are gluten free, which ones aren't(Pringles are not, the Lays chips that look like Pringles are gluten free). You just have to look for the sticker.

    If you haven't been there – http://www.glutenfreemall.com
    http://www.glutenfreegirl.blogspot.com

    Also, to be clear, not all Amy's meals are gluten free, but many of them are, and they are very clearly labeled.

    Reply
  10. Maralise your essay brings up some very poignant thoughts. We mothers would rather do anything than see our children suffer. Our children are like our tenderest extremities, and their pain is ours.

    And no, I don't think your knowing Johnny was coincidence. Neal A Maxwell speaks of the "intertwinings" of our lives as God's design, not coincidence.

    And as for celiac,
    My husband's brother was a dying four-year-old when he got his diagnosis of celiac. The family was living in a foreign country and returned to the US to help him live. The diet did wonders. He is now a 36, a macho man and an FBI agent, still on the diet. He has four kids, all just fine.

    Their sister (age 30) also has celiac and is doing okay, although she is extremely thin and so far unable to have children.

    I extend my hope and prayers that your little boy will "eat" rather than "fly". Keep us posted.

    Reply
  11. The act of feeding feels like such a fundamental job of being a mom that when I can't feed my toddler (who also has EE) due to dietary restrictions or preparations for another invasive test, I feel like a failure.

    I love Heather O's description of adversity. We live with adversity from day to day so we can put it on the back-burner and almost forget until there's a hiccup. When those hiccups happen, I wonder what progress I have made because I feel like I'm right back where I started.

    Johnny's story is haunting. I've thought about him every week since you told me his story. I do think medical care has come a long way since then, but it's still hard when we go to the doctor's and they can't give me any sort of prognosis or statistics because this disease is so new.

    Is Grey on an amino acid formula? I credit Asher's formula with getting him out of the failure to thrive diagnosis.

    Grey's lucky to have such a diligent mom. My prayers are with you and your family as your work to figure things out.

    Reply
  12. EmilyCC– He is not on the amino acid formula, yet. We haven't started the elimination diet either. Right now, we're treating with steroids and keeping him away from foods that he is more traditionally allergic to (eggs, gluten). We actually just got (on Friday) a long-hoped-for letter informing us that our insurance company will pay for feeding therapy again. We will go to therapy twice a week and they will help guide us through the elimination diet process and hopefully help us get him out of the failure to thrive category. At what point did they put Asher on the formula? Is he on steroids as well or are you simply doing the diet? What are his triggers, if you know? Do you know any other EE patients that have celiac as well? (my doctors have not seen this combination before) Thanks for the encouragement and info…it's so nice to know there are other parents out there.

    Reply
  13. Asher went on formula as soon as he was diagnosed as failure to thrive (he was 13 months old), and he's been on ever since. It's a nice crutch for those days he refuses to eat, and it's gotten him to 10% for weight. He's off chicken and the "Big 8" food allergens, except for wheat–we got that back about 3 months ago. I think I have heard of some people with celiac and EE. We have a nice little support group here (although I find it a mixed blessing–most of the kids are on formula only diets), and I also find the yahoo group helpful: http://health.groups.yahoo.com/group/eosinophilgastro.

    Good luck with the feeding therapy! I'm glad you got the insurance approval. Since this is such a new disease, I find I have to fight insurance for everything.

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  14. EmilyCC–I am going to ask about that formula. I'm so glad that Asher is getting foods back! I am also going to sign up to the yahoo group. I knew it was out there but I hadn't looked for it, so the link was very helpful.

    The feeding therapy situation was paid for, and then not, and then denied by appeal, and then accepted with the second set of appeals. Got that?

    Should we post about the trials of insurance covering/not covering treatment? Let's not. I could lose my cool and that is not pretty. Thanks again for all of the information.

    Reply

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