BEN ON MY MIND

I just got a call from Ben's doctor who is referring him to Riley Children's Hospital. He will have extensive tests to get to the bottom of what is going on. To those who might not know- Ben is severely allergic to peanuts, but is also being put through therapy for pollen allergies. He caught some virus over spring break this year for which he has not fully recovered He is now dealing with stomach problems which are hindering his ability to eat as well as some other issues. So needless to say, this has been on my mind today, I am kind of at a breaking point with all of this.
As parents, we are all advocates for our children weather it be in school or on the local playground. I have found, we as parents are our children's best teachers, best coaches and best friends. No where and with no one will they feel 100% safe all of the time except in the shelter of a loving home surrounded by people that love them unconditionally. This has been on my mind a lot lately as I struggle to educate people about Ben's life threatening peanut allergy. It doesn't get easier to manage so I feel the only step I can take is to educate.
As a parent of a child with an allergy, I have come to dread most activities that other parents look forward to. I dread most birthday parties, vacations, school, family get togethers, and pot lucks. I constantly have to worry about offending people or making the event uncomfortable. I WANT to trust those people, I know they love Ben but lack of education means mistakes are made more often than anyone can imagine. I am so grateful for the people who try so diligently for Ben but I live in constant fear of the people who don't care who think we are over reacting or that Ben's allergy can't be as bad as we say or, simply forget to check, or read a label.
Ben has to turn down all the treats other children enjoy daily no baked goods, limited eating in restaurants, etc. I do not like to have to leave an event because the parent didn't care enough or worse, not being invited because they didn't want to be "responsible" for him. Most parents without a allergic child assume nut free simply means no visible nuts. They do not understand we have to read EVERY label EVERY time or that even a plain chocolate bar could still be cross contaminated and unlike, other food allergies it only takes a very small amount to trigger a reaction.
People often say "Ben hasn't had a anaphylactic reaction so why worry so much" But that is so far from the truth. EVERY reaction, no matter what form makes the next reaction worse so the only way to keep Ben safe is complete avoidance. If he vomited today that does not mean it will be vomit only the next time. Ben's RAST test results are Class 5 Which is strongly positive His peanut IgE is 90.4 Strongly positive is a range of 50.1-100.0.
You would be absolutely amazed at what people say to us about why their child can not go an hour, a day, or a weekend without peanut butter or peanut candy,etc. These are the very blunt comments I wish I could say to those parents.
How would you feel about having your child watch another child die in front of them?
What are you teaching your child? That their choice of food in more important than another child's life. These comments may seem harsh, but they are our reality.
I am hurting a lot about this lately. I can sometimes go a long time without letting it consume me, but then something happens and it starts again. Every year it is a new struggle and a new set of bargains as he goes through school and life.
Have I been over the top? You bet! I have learned it is up to me to be Ben's advocate, to be PROACTIVE and alert. I am not what some may call an alarmist. I am a mother who loves her child and will do whatever it takes to protect him. I think we all, as parents, would not ever want to compromise our children's lives, I have that on my mind every single day. Today a little more than most days1