Sunday, July 24, 2011

Are we working against each other?

My sister told me a story today.  She was at a social event a met a mother, and a vibrant young 7 year old who reminded her so much of my Gabriel.  In talking, my sister learned that not only did she have  a similar vibrant spirit,  this little girl suffered from allergies and anaphylaxis like my Gabriel, as well.

My sister was so excited to find a friend for me.  Someone to share recipes with.  Someone to ask for advice, or recommendations about doctors, meds, or diet.  Someone to share 'safe' place to go in public.  Someone to share my fears with, and most importantly, another child for Gabriel to relate to.
As my sister told me about the family she met, she sounded excited.  She was happy for me, and sincerely thought that this could be great.

As she continued, I was quickly disappointed, but not surprised....
It sounded so much like the conversations I often have.
In public, I might mention "Oh I'm sorry, he can't (have, touch, go).  Gabriel is allergic."
More often then not, the response I get from the stranger at the store, park, or event that we are at is "oh, yea, my (nephew, sister, dad,..) has allergies, really bad, though."
Typically, I nod and smile and say "wow Im so sorry"
The response that I hear most often? "Oh Yea.  (he, she) is allergic to EVERYTHING.  (he, she) has an inhaler,  and stuff. Yea, its really bad, like really bad."

My sister continued to tell me about the family she met. My sister was so excited to have a common ground for this mother and I, that she shared "my nephew, he has eosinophillic esophagitis, you should talk to me sister."
The answer she got?  "oh, well, we got Lucky.  We have the total package.  She also has asthma and eczema."
And again, my sister was so excited to share "You should read my sisters blog!  She shares recipes, tips,...it would be great for you to be in touch"

I will not quote the final comment, but I can tell you that it was a bit negative.

I am not, by any means, intending to mock anyone.  I agree, allergies can be very bad, and more often then not it can feel like we are allergic to everything.  I don't care what foods are worse to be allergic to, and I will never care who is allergic to more.  Listing diseases and symptoms will never be something I try to do, and competing for the worst case is never ever something I care to be a part of.  Why, so often, does it feel like other are competing?

I write to educate, and spread awareness.  Like cancer, Alzheimers, or PID, awareness and education is key.  The more people aware, the more research, the more research, the more solutions.  Education and public awareness also come with public sensitivity, options, and more safety for our children.  I am not ashamed to share about Gabriel's health, because I'd like to spread awareness.  I am happy to write all that I've learned through my own trials and mistakes, to help educate.  I get excited when I meet another mother that I could possibly share recipes, safe babysitters, and great doctors with.

If you or someone you know has allergies, or asthma, guess what?  We are on the same team.  I empathize for you, and I care about your child's health and safety.  I want to hear about your experiences, and I will listen to your fears.  We are on the same team.  Only when we feel like we are, will we begin to make significant progress in awareness and public education.

Then, maybe someday, will the airlines finally stop serving peanuts.

3 comments:

  1. This sounded like she was competing for which child was 'sicker'. How ignorant can one person be? That is not something that I would EVER one up someone on. Some people are just sick... and plain out STUPID!

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  2. And this is Amber (Bronzed Moments) ^^ For some reason it will not let me log on in order to leave my name

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  3. Having 2 anaphylactic children and issues myself and within immediate family I hear you. What makes me really mad (and saddened) is when allergies are discussed with another 'allergic' family and then I discover that they do not mean an immune-system allergic response with uticaria(hives), respiratory distress, cardiac distress, severe vomitting and loss of bowel control .... they mean a behavioural change. My children have life threatening responses, as does yours, to foods that require major medical intervention and lifestyle considerations in everything we/they do eg schooling, daycare, eating out, travelling, sleepovers at friends houses, parties...... Food reactivity(as I like to refer to these sorts of reactions)and the associated behavioural/emotional issues like ADHD etc are an intolerance or sensitivity and are in no way an "allergy". Having said this I by no means want to denigrate these reactions and the distress these children and families go through but it is not the same as food potentially being fatal.

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