Fighting the Fight

I have shared with all of you before that my youngest daughter has had a lot of medical issues in her life.  She has a condition called Eosinophillic Esophagitis.  Because of this she developed severe food aversions as an infant, and these food aversions continue today even though she is now 11 years old. This means that her diet is extremely limited.  When I tell people this, they often don’t really get the severity of it.  I am not talking about your typical picky kid. I’m not even talking about those few extremely picky kids.  I am talking about a severe fear of food.  I am talking about the knock down, drag out, tantrum throwing, crying, gagging, and vomiting type of severe food aversion.  She has spent about 5 years in feeding therapy in order to get her to eat anything besides yogurt and applesauce, which is what she ate for every single meal until she was 4 years old.  I am not exaggerating.  That is literally all she ate.  

Here is the list of things that she will eat for meals now just so you can get an idea of the severity:

  1. Hot Dog-no bun, no condiments, no ends
  2. Pasta-plain, no trace of anything other than butter on in (oh and butter is a fairly new addition), and only eats about ¼ cup
  3. Peanut Butter or Sun Butter Sandwich -no crust, no jelly, and only eats ½ of a sandwich
  4. Chicken Nuggets-only from McDonalds, Chick-fil-a (only the center after she has picked every piece of breading off), or Perdue Simple Lightly Breaded (which I can no longer find), 
  5. Pork Chop-only cooked by me, only cooked in the crock pot, and no seasoning, only eats about ¼ of one pork chop
  6. Chicken-only cooked by me, only boiled, no seasoning, only eats ¼ of chicken breast 
  7. Hamburger-will eat if forced to at a restaurant but picks apart, no bun, no edges, no condiments, only eats about ¼ of patty
  8. Pancakes-only Eggo mini’s, no syrup, will eat from Cracker Barrel or IHop, will only dip in a little syrup at Cracker Barrel
  9. Waffles-only Eggo, no syrup, occasionally with peanut butter
  10. Yogurt-only one specific brand, only vanilla

Fruits:

  1. Apples
  2. Bananas
  3. Grapes (recently has not been eating)
  4. Applesauce (recently has not been eating)-only cinnamon flavored and only one brand

Vegetables:

  1. Green beans-only cooked by me, only 4-5 beans
  2. Red pepper-raw only
  3. Potato-only baked, no butter, only salt

That is the extent of what she will eat at meals besides things like fries, chips, and snack type foods.  It took many years, a lot of tears, and a lot of therapy to get just these few foods. As you can imagine, this makes going out to a restaurant extremely difficult. If they do not have pasta that she can get plain, a hot dog, or a hamburger, we cannot go there because she will not eat.  I pack her lunch every single day of the week for school.  She has a special 504 Plan through the school that allows her to use a microwave at school so that she can heat up whatever I send her.  This limited diet also makes things very difficult for her to go over to a friend’s house.  Up until one weekend a few weeks ago, she had only ever spent the night with one particular friend (or really gone over to any other friends house besides that one) because her mom understood the circumstance and had a shelf in her pantry of just my daughter’s foods.  I knew that whenever she went over there, this mom would fix her something that she could eat.  This past summer, my daughter wanted to go to a sleep-away camp, but I couldn’t let her because I knew that she wouldn’t eat and there was no way for the camp to accommodate her foods.  We are headed to Orlando soon for her cheer competition.  Her team is doing a team dinner one night with a fixed menu. I have to prepare my daughter for several days ahead of time about what the options are (none of which she will eat) trying to talk her into eating that night. My husband and I already know that we will likely have to feed her later that night. This is a daily battle.  It is a battle I have fought every single day since she was born.  Making sure that she has food to eat and that she is eating enough is a full time job. It is always in the back of my mind. It’s exhausting. We no longer send her to feeding therapy because we had made no progress in over a year with getting her to even try new foods.  We basically gave up.  Therapy was causing too much stress and resentment, and we felt like it was not worth it.  I have had to resign myself to the fact that this is who she is and that we aren’t going to be able to force her.  It’s not something that she is going to grow out of like many people and doctors have said to me.  It won’t do any good to just “let her starve because she will eat if she is hungry enough” as so many have told me. Trust me, we’ve tried it. She would rather starve to death than to eat new foods. We now just monitor her weight very carefully.  She has been labeled as failure to thrive because she doesn’t grow and gain weight like she should.  Doctors have threatened her with a feeding tube if she doesn’t gain enough weight. A recent bone test reveled that her bones are a full year behind in growth. I honestly don’t know how she even survives and thrives at all with as little as she consumes in a day.  Last week she had a chorus concert with other 5th grade classes from other schools in the area.  Seeing her standing there among her same age peers was saddening.  She is extremely small compared to every other kid her age. Most people don’t believe that she is 11 because she is so small.  

I know that there are many other moms out there who have children that have feeding issues or something similar.  I know how exhausting it can be.  I know how stressful it is.  I know how many nights you lie awake wondering what else you could have done to prevent this. You worry about your child’s health. You worry about her growth.  You wonder why? Why me? Why my kid? I know how it feels when other moms shame you. I know how it feels to listen to everyone else’s version of what you should do. I know you worry about how others treat your child.  I also know that, like me, you will keep fighting the fight. You will keep moving forward despite all the setbacks.  That’s what we as moms do.  We have to. It’s our job. If not us, than who? Well, I am here to tell you that we’ve got this! We can do hard things.  They only make us stronger.  They make our kids stronger.  I encourage you to not be discouraged. Don’t listen to everyone else. Do what you think is right. Don’t give up. Keep fighting the fight.  I am on your side, and we can do this crazy little thing called motherhood. 

Anchored, 

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