They're just apples!

THE PREDICAMENT

Last week I had my first real experience of being judged by another mom for food choices I have to make for my son with EoE.  I have read so many other versions of this experience by other mom’s sharing their stories on FaceBook and blogs.  I knew it was bound to happen eventually.

It’s that moment when the other person realizes that something might be different with my child and then I’m faced with the predicament… to explain or not to explain.   Should I go into some elevator speech (that I have not quite perfected) about how my son has many food allergies, has a rare disease called Eosinophilic Esophagitus, and that he has a feeding tube to supply most of his caloric needs?  Or just let it go, simply say he can’t eat that, and quickly move on? 

Inevitably, if I go down the elevator speech route, the person will look at me or my son with that “poor you” look and TRY to sympathize, even though they don’t have a clue as to what we go through everyday of our lives, nor do they really want to.  Or, they will try to almost physically remove themselves from the little “situation” they have gotten themselves into by having to listen to a mom with a child with special needs drone on and on and on about their woes.  It’s on the rare occasion that someone outside of my normal social circle will truly try to get it and truly listen and truly try to understand.  It’s on these occasions that I feel a sort of triumph that someone listened and may help me raise awareness and not get all “judge-y” on me.  

FIELD OF DREAMS

About a month ago, my husband and I were overjoyed with our first foray into a life resembling normalcy when we signed our five year old son up for t-ball.  This was Brady’s first time being on any sort of team activity and his first crack at trying out baseball.  The first day of practice I may have gone overboard by making Brady pose for entirely way too many pictures before he and Coach Daddy headed off to the baseball diamond. 



Brady's first t-ball practice

Brady's "mean" face

Sweet Brady boy

My husband and I were simply elated that Brady was getting a chance to do something “normal” that didn’t have anything to do with food and he could escape to his field of dreams, and ours for that matter.  He loved his first practice!  Brady was quite impressed with his new baseball cleats and making “smoke” in the dirt of the field.  He was also quite impressive at picking up sticks and drawing in the infield while his teammates took their turn at bat.  Classic.  The baseball diamond is also right beside a railroad track and Brady (and the rest of his teammates) were quite ecstatic with each passing train sending practice into a halt until the train completely passed by.  Welcome to t-ball practice for kids between the ages of 4 and 5.  I loved every minute of it.



Brady making "smoke" running to home base



SNACK TIME

Once the team had practiced a few times, the coach handed out a sign-up sheet for each parent to bring snacks for each game.  Uh oh.  So much for our food-free activity.  However, I didn’t get upset.  This is just a part of life that we have to deal with that looks a little different for our son.  Most kids are so excited for snack time to arrive.  I know, because my daughter is one of them.  Snack time for Brady?  Well, he hates it.  It means he has to stop what he is doing to sit down and watch other kids eat their snack.  Not only does Brady have EoE, but he has a severe feeding sensory disorder that has only grown worse since having a feeding tube put in a year ago.  Brady would rather have his calories go through his “tubie” than eat.  We don’t even know what his “safe foods” are because we can’t get him to each much of anything. 

So, we do the best we can most days by encouraging him to eat the foods he is willing to put in his mouth.  Right now, we have about 3 foods that he is willing to eat including Goldfish, fries, and cheese crackers.  Technically, most of these foods have ingredients that Brady is allergic to but because he eats so little, we are able to get by without EoE flares due to the med regime Brady is on.



Brady in uniform before his first game



Batter up!

Go, Brady, Go!

THEY’RE JUST APPLES!

Last week, I had a first when a mom got all “judge-y” on me.  It was after Brady’s t-ball game when the mom began passing out snacks to all of the kids.  She had brought apple slices and apple juice.  Brady refuses to try either, even though we have relentlessly tried.  Brady will only drink water and apples are still a scary food for him. 

So, then I was faced with the predicament – to explain or not to explain.  It was busy, I was tired, it was hot, and I was ready to pack up and go home.  I decided to go with the not to explain option.  When she began to hand Brady the apples and apple juice, I politely told her he can’t have those.  Technically, he probably could have them (we don’t know if they are safe or not since Brady won’t try them), but he could have tried. 

My sister was nearby and overheard the conversation.  When the mom looked at me like I had grown three heads after I said, “he can’t have those” the mom then looked at me completely disgusted and retorted, with a bit of an attitude, “They’re just apples!”  My sister then intervened and said again, “Sorry, he can’t have those”.  It was a good thing that she jumped in when she did because I was in a state of shock.  It was a simple statement on her part, but I felt so hurt and embarrassed and angry.  I felt attacked.  I felt judged.  I then went to a dark place.

It was the anger that quickly took hold of me as we left the ball field that night.  Anger at the other mom for being so judgmental.  Anger at myself for not trying to explain better.  And pure anger at EoE and this world that we live in.

What I wouldn’t give for those apples, to be “just apples”.  Those apples are the epitome of our existence.  We’ve been down this long road over and over again fighting for and against food to keep our son alive and as healthy as possible.  This daily struggle with fighting the good fight for my son to try, just try, something new has become exhausting and overwhelming. 

For some kids with EoE and allergies to apples, consuming those “just apples” would be the start of something horrible and unimaginable to parents with kids that don’t have EoE.  The flares, the vomiting, the diarrhea, the stomach cramps, the sleeping, the joint pains, the refusal of food after the flare, hospitalization…  could all be the result of eating “just apples”.

In her defense, I’m sure she didn’t mean anything by her comment.  Trust me, I thought all night and the next few days about what she said which prompted me to write this blog.  I’ve got to think that from her point of view, she thought she was providing a healthy snack to all the kids and my refusal of that snack for my son may have been insulting to her… or something.  I’m not sure.  I just wish she would have left her judgment and attitude home that day.  I don’t need that in my life.  So there, “Judge-y Mom”, how do ya like them apples?

It’s gonna get easier, I know this.  I will get better at reacting.  I will hopefully be able to let the anger go after incidences such as this.  I will perfect my elevator speech.  I will be more mature. 

Brady will start to eat foods someday.  Brady will overcome.  Brady will learn and be willing to partake in snack time. And who knows, maybe he will grow to like apples. 

Oh, how I would love them apples.