EoE: Emotions of Diagnosis

We don’t eat out at restaurants.  We don’t go through drive-thru’s.  We don’t cook with cheese, milk, soy sauce, egg, or cream of whatever soups.  We don’t cook freezer meals or boxed meals.  We don’t buy granola bars or pop tarts or many boxed, prepared foods.  Not because we’re attempting to save money, save the earth, or be super healthy but because we can’t…or at least our son can’t.  Our youngest son, has multiple severe food allergies…the kind that can kill him.

Dealing with food allergies to dairy, soy, egg, peanut, tree nut, legumes, green pea, cats, dogs, and hemp has not been the easiest road to travel.  The months of not knowing what was wrong was an incredibly stressful time for all of us.  As was finally finding out what was wrong.  The emotions that one goes through when they’re told that there is something medically wrong (at times fatal) with their child is definitely the most difficult situation I have faced.  Denial, guilt, anger, despair, depression, anger, and self pity are all feelings that are not just dealt with in the beginning…but in each and every time there is a reaction, a feeling of your child being treated differently, of dealing with allergy ignorant people.

Adjusting our lifestyle has been a long tedious process that I finally have mastered.  I cook almost every single meal from scratch.  We don’t leave the house without a cooler of food, two epi-pens, and a packet of chewable benadryl.  I can easily walk through a grocery store and pick out all the allergy free (for us) options in a matter of minutes.  I know which substitutes will work in recipes, and not others.  I have learned how to educate people so that they’ll listen…  However, what I was not fully prepared for was another medical “issue”.

The “issue” is EoE (Eosinaphilic Esophagitis).  Somehow I had convinced myself that food allergies was the setback, the “thing” we had to deal with in life.  We live a pretty incredible life.  I am very, very blessed in so many ways.  I guess I figured that God, the Universe, or whoever you feel is “responsible” for us, gave us food allergies to even out the scale.  Apparently he/she/it is not done dishing out the setbacks.  Or maybe, as I type this, it’s just that my emotions are still in the process of recovery going through the anger, self-pity, depression…  Because really?  How much can one little boy take?  When is the friggin scale even?  When will I ever finally stop worrying???

Yes, yes, yes, I am often reminded that many other people have it worse.  But my son is not many other people.  This is my child, his life, our life….this is what WE deal with.  I know at some point in the future I will also have conquered my feelings about EoE just like I have with food allergies.  It will just be part of our “normal”.  But for right now dammit, I’m mad.  I’m hurt.  I’m feeling sorry for myself, my son, my family.  Because it’s not fair.  Because I would give up many parts of my wonderful, blessed life for the health of my child in an instant.  Because I’m sick of being strong.

But I will continue.  I will continue, even if it means he can no longer have wheat.  Even if it means he can no longer have beef.  Even if it means he can no longer eat food.  Even if it means he needs a feeding tube.  I will just deal with it.  I will deal with it and anything else he/she/it throws at me.  But it doesn’t mean I need to like it.  No, because right now I’m still too damn angry.