Monday, November 26, 2012

Expectations- It's a Grey Area

My honey and I had an interesting conversation recently about how we expect, yes I typed correctly expect, people in our children's lives to deal with our children's allergies. 

He seems to understand people's doubt and minimizing our explanation of our boys life threatening allergies.  I, on the other hand, am completely intolerant of it.  There, I said it.  When it comes to my children and their ability breathe or not- yes, I am completely intolerant of people's lack of understanding and unwillingness to get educated.

My hisband says he recalls ten years ago when our niece was diagnosed with celiac disease.  He says he remembers my sister in law fretting over every morsel our niece put in her mouth, he remembers her dictating where we could or could not eat, and how it controlled her every thought.  He said honestly, "I was young and uneducated and I just did not get it.  I thought she was just being overprotective and exaggerating the seriousness of it because she is an overprotective mother."  Poor cutie he married me, a fun loving girl who then became a complete overprotective tigress of a mother... the children's life threatening allergies only exacerbate this tendency in me- they honestly did not cause it.

Contrastingly, when my niece was diagnosed I remember researching everything I could about celiac disease.  I got myself completely educated on what it was and how it would impact her life.  I even searched for recipes to share with my mother in law so she could create safe dishes for her.  So, I guess it stands to reason that I expect everyone to do the same thing for us.  I will be completely naked with my heart right now- when people do not understand, it hurts me deeply.  It makes me angry.  It makes me feel that because they do not understand, then they do not love my children enough.  Perhaps this is wrong, but regardless of right or wrong, it is how I feel. Please understand I do not refer to strangers on the street, people I work with... I mean family and close friends.  I would go out of my way for them, for a perfect stranger in need I would go out of my way, so I feel if they loved me and my children, they would reciprocate. 

He says it is wrong to have such high expectations of others.  Perhaps he is right, but this is my children's LIVES, and I cannot seem to control that this is how I feel with conviction- period.

When people bend over backwards for my children it makes me feel they get the gravity of the situation. I am literally moved to tears when a restaurant works hard to make everything safe.  I recently had a close friend ensure a safe environment for our boys at Halloween.  ALL of the candy was safe for the boys at the party.  Everything!  Words cannot explain the gratitude.  But, when people put the boys in harms way, words cannot explain the deep anger, the fear, the anxiety, and the hurt.

My oldest is pretty good at knowing what is safe, and what is not.  My beautiful little man remembers his last anaphylatic reaction clearly.  He is honestly petrified of it happening again.  Sadly, at such a young age he understands life and death decisions.  He has even said that sometimes epi pens are not given fast enough.  I worry about him.  A LOT.  He still is under the impression that he can run from ants when he sees them, not understanding that they can get inside your pants legs before you even knew they were there....but, the fact that he has a healthy fear of another reaction makes me feel I can trust him a little more at gatherings/parties.

Our little Bee, however has absolutely no understanding of the life and death decisions involved in his food choices.  He was 18 months the last time he had something with eggs in it and thankfully does not remember it.  "B" LOVES to eat too.  So, it is typical of him to try to eat something from someones plate, the table, or the counter.  I am petrified of going to parties/gatherings with "B" and I usually stay there and smile and try to carry on conversations while fighting the internal urge to rip them away from the party to keep them both safe.

The below are a few pictures to hopefully educate others.  We actually took pictures to keep me calm- I took pictures and then would look back every 30 seconds at past pictures to see if he had gotten worse.  It helped me decide if it was my imagination or fact. 

My beautiful little man playing.  Below is the exact same day.
He has nothing in this mouth- he is just that swollen.  Can you see how his right eye is swelling shut?  And his right side of his face is so swollen?!?

Bee after one bite of sauce with eggs in it that he spit out & did not swallow.  You cannot make out the hundreds of hives on his body from this poor quality picture.  He had hives all over him, his tongue and throat were burned from the brief contact with eggs, and you can see his eyes are almost swollen shut and his face is comepletly altered.  He was on his neubulizer machine for days afterwards and it completely wiped him out for days afterwards too- below is him falling aleep from exhaustion caused by his reaction.  Thanksfully, he never lost consciousness.

No, he has nothing in his mouth- he's swollen from the reaction.


What is your opinion on other people's understanding and accommodating your babies life threatening needs?  I would love to hear your point of view.


  1. It is very hard to endure this. But I understand fully your feelings about. Not only that, but I feel the same way. We just went to a picnic where my brother in law cooked and he actually thought of my daughter and cooked a meal she could have. For everybody...She felt really touched and I felt loved. He's the first person to do that in almost 4 stressful months...Nobody else has. Instead most of our families/relatives actually avoid us now or seemed bothered by it :(

    1. Norma,
      I relied earlier, but being new to blogging, i am not sure if the way I replied would let you know I responded. You mentioned it has only been 4 months. Please let me know how I can help.

  2. Norma- I love to hear about those beautiful moments when a family member or a beloved friend just "gets it!" Our society is created around memories of food- holidays, birthdays, almost any social event. It is no wonder that we associate being loved or unloved around people's attempts to create a safe environment/meal for our children. I promise to keep writing with all the truth in my heart, I hope it will pave an easier path for others that are living in this same lifestyle. I have shared about three different posts with certain family members as I was hoping their words, which mimicked my heart's cry, would help other's understand. I hope you keep reading. Please let me know if there is anything you need or want written. I want to be there for all of my readers. We, Allergy Parents and our "babies" are in this together :)

  3. I love this post. I've been a little shocked at the lack of understanding around allergies my son's Wheat, Egg and Peanut allergies. They simply just don't consider it and I'm terrified of what could happen. I'm seriously considering making a shirt that says, "Please don't feed me w/out asking my could kill me". Is that too harsh? My 3 year old knows to ask "mom can Owen eat this" before he gives it to him, but some of the grandparents still need training.

    1. Tatum- I sadly think it is what people seem to need! I wish the doctors had created a more clinical sounding name for food allergies. People think "allergies" and associate it with running noses and itchy eyes. A more clinical sounding diagnosis such as "anaphylatic protien disease" sounds much more scary and I honestly feel would be treated more seriously. Many people hear me say Branden has celiac disease and react more strongly to that than the allergies that could immediately cost him his life.

      I think the "Please Don't Feed Me, You Could Kill Me" T-shirts bussiness is a great idea :) You could soften the bluntness with a cute little character smiling innocently back at the possible offender, excuse me, person ....

      I am sorry to hear your family struggles in this food allergy world as well, but I'm happy we can share in it together.