Monday, November 12, 2012
A Crazy Weekend Filled with Too Much Reality
This past week was a very busy one for my little men. While living with children with life threatening (anaphylactic): environmental allergies, insect stinging allergies, and food allergies poses daily threats and much planning, this past week has been especially draining.
On Mondays, our oldest (6 years old) goes to co-op classes with other homeschooling children. We have emphasized repeatedly to the teachers that our son has anaphylactic reactions to food, environmental allergies, and fire ant allergies. It seemingly has fallen on deaf ears. They simply are not understanding that our son could fall to the ground and gasp for air in a matter of moments when exposed to "poison". This Monday, he came home from his classes and animatedly told us stories about eating blue candy that made his mouth and tongue turn the color of a blueberry. Then he excitedly told us about all of the bugs they saw in his "A Bug's Life" class when they walked around outside looking for insects with their magnifying glass. It is in that moment the inner conflict takes hold of my gut. I smile through clenched teeth and try to remain calm while he happily laughs about the events of his day. "Umm... Who gave you the blue candy?" He proudly says, "I asked her to make sure it was safe. She read the ingredients and said it did not contain eggs." I replied "Good job asking." Inside I am screaming!!! We said no shared food. We emphasized severe reactions, cross contamination issues, and often needing to call manufacturers to be sure it was safe. Does this person assuring my son that this candy is safe know that the ingredient labeled albumin is another name for eggs?!? But instead I smile and say, "Oh, I see. Did you remember your epipen and benadryl when you went to look for bugs outside?" He nonchalantly answered with, "No mommy they said we had to leave our stuff inside, but I was smart and told everyone to yell when they saw an ant and I would need to run away." I said, "Oh, well, I think in the future your epipen should remain on your body, baby." But inside, I silently wept for the what-could-have-happened scenarios running through my head. Later, I told my wonderful husband about what happened. We both sighed with relief that he was okay, stressed over the constant worry, and resigned to the fight to come with people who fail to comprehend the gravity of the situation.
Thankfully, the rest of the week went by status quo. Then Saturday came. Saturdays are usually filled with soccer games and swim meets. I love to watch our little man play! This week was the last week of the season. I had prepared a little goodie bag just in case and emailed the coach asking for a head's up on any events afterwards. I heard nothing. Sadly, no communication is typical, so I showed up with the goodie bad just in case. We went to get their medals and celebrate one last time as a team. Surprise!!! Fast food children's meals and egg filled cupcakes. Children are literally squealing with excitement and laughing with joy. My son has experienced exclusion several times in the past despite my wildest attempts to protect him. He has always looked at me with sad eyes and said, "It is okay Mommy. I am not hungry anyways. Can we just stay and play?" So I was anticipating this same kind of reaction followed by overwhelming guilt that I could not protect him from disappointment in an already disappointing world. I was ready to also play my part of smiling and saying sure, baby we can play and promising an egg free alternative of the exact same thing once we got home. Instead my little trooper turned to me and cried. He buried his head into my stomach and lost control and just bawled. I honestly did not know what to say or do. I could not make this right. I could not make this go away. I tried to take him to the side so we would not be in the center of all eyes. He was rooted to his spot and years of fear, worry, anger, and anguish was being released. After what felt like an eternity he looked at me and said, Why Mommy? Why! Why does everything have to have eggs in it? Why does everything have to be unsafe for ME? It's not fair!" I looked at him with tears streaming down my face and said, "You're right baby, it is not fair. It is completely not fair that this world is filled with things you are allergic to. It is completely not fair that you are excluded because other people fail to communicate when foods will be present. And it is not fair that I cannot make this right, right away." He nodded and cried again. I held him tight. Once he was calm again, I was able to tell him a funny inside joke and he went of to sit with his friends.
I went to the children's fast food meals, grabbed the toy inside and placed it in an empty box so he could feel a little more included. Then I held my breath and tried not to hover as my child that is anaphylactic to fire ants sat on the ground with the rest of his team. I let him stay a few minutes and then tried to calmly prompt him to leave right after another child was bit twice by fire ants. Sadly, he sees right through me every time. He stood up, swallowed the lump in his throat and quietly followed me to the car.
On the drive home, I promised a fast food treat (a rarity) and his very own sweet tea (something I have never done). Guilt is a beautiful thing- if your six and reaping the benefits. As we pulled into the driveway, My big boy told me matter-of-factly, "Mommy you cannot always protect me, you know? Sometimes, you just can't. Sometimes, you may not be there." How do you respond to that? How do you assure him you can, when life is unpredictable? How do I reassure him, when every moment of everyday I hypervigilantly try to keep them safe and know that I cannot always be there. I answered the only way I knew how, "I will protect you, darling with everything I can until my last breath". He just put his little hand in mine and we walked to the front door together. Thankfully, for today, despite the situation, he was physically safe while I tried with my everything to keep him emotionally safe as well.
Our crazy Sunday to follow tomorrow, I promise.