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Monday, March 5, 2012

Thank You Up and Down and All Over the Place





I just want to take the time to thank all of the people in our lives who have gone out of their way to participate in our battle against food allergies.  By this, I mean, those who have put themselves in our shoes and taken special consideration to reduce Elena’s risk of exposure and exclusion.  

First, what does this mean?  Exposure and exclusion are the two things we fight against the most.  Obviously, we go to extremes to ensure that Elena will not come in contact with any food containing one of her allergens each and every day. The other struggle we face daily is fighting to avoid exclusion due to Elena’s allergies.  Every time a new and unfamiliar situation arises, my first inclination is to avoid attending.  I never know what the food will be like and how I will make Elena feel included in the event if she is not able to enjoy the treats that every other child around her is having.  We have so many friends and family members who have thought about this for us in advance and made sure Elena would be included.  We are so lucky to have such caring and considerate people in our lives and I think they can serve as a great example to other people who have friends dealing with food allergies.  

I’m going to avoid using names because so many people have done these things for us and I don’t want to leave anyone out.  The acts are pretty amazing and all unsolicited.  I don’t even think I would have been able to think of these kind acts myself and I am amazed at how thoughtful these people have been.

One of the most dreaded events for many kids with food allergies (or their parents anyway) is the birthday party.  With our allergies (egg, dairy, nuts) cake is always an issue.  I always plan to bring Elena her own safe cupcake, but sometimes it’s just not the same.  All of the kids are crowded around a beautifully decorated cake unlike any they have ever seen, while Elena is at a safe distance with her same old cupcake that she gets every time there is a celebration.  Sure, I try to change it up.  I do different flavors and decorations.  Sometimes I let her decorate it herself, which is great fun while we’re at home, but when faced with the magnificence of the treat being enjoyed by the other kids, hers always seems to be a bit of a disappointment simply because it’s different.  

Elena has actually woken up in the night crying because she dreamed she was at a birthday party and couldn’t have a cupcake like the other kids.  It is heartbreaking to see anxiety beginning in your 3 year old.  Although I fear exposure AND exclusion, she only fears exclusion.  I have no doubt that the fear of what could happen if she is exposed to an allergen will come in time, but for now she does not have an understanding of these risks.

I always bring a safe cupcake, so what else can be done?  Our friends have answered this one for me through what I can only describe as heroic acts of kindness.  They would tell me that’s silly, it’s no big deal, but to us, it’s everything!  Here are some examples of the kindness we have encountered...

1.  Saving/ordering safe decorations to add to Elena’s safe cupcake so hers will look like all of the others
2.  Finding an allergy safe bakery and ordering a special treat that Elena did not have to bring herself.  She loves getting something she has never seen before and that she knows Mommy did not bring.
3.  Making safe cupcakes/cake.  Yes, actually making egg/dairy/nut free dessert for EVERYONE!!!  Can you say, amazing?  Elena, being the only one with a food allergy in attendance did not even know the magnitude of this act, but I sure did.
4.  Letting me know ahead of time exactly what foods/treats will be served so I can duplicate as closely as possible.  This makes such a difference because, although hers is different, it’s not SO different.


Here are some cakes Elena has been able to enjoy...

This is Uncle Scott's 32nd birthday cake with princess sprinkles.


Tiffany proves you are never too old to have an allergy free birthday cake, even if you don't have food allergies of your own.  You're welcome for this photo, Tiff.


Elena's 2nd birthday party.  All of the kids enjoyed this allergy free cake even though Elena was the only one there with food allergies.


This was Elena's 1st birthday cake.  She had her own safe smash cake and this one was NOT safe.  Yes, there was a time when I questioned whether I had the right to serve allergy free food to other people.  I am so glad those days are over.






Birthday parties are not the only difficult situations for a family dealing with food allergies.  It is also extremely difficult to accept help from others when we need it.  For example, when our second baby was born, we had to decide whether or not we could accept meals.  Ultimately, we decided that we would accept meals, but not allow Elena to have them, which meant cooking for her even when a meal was being provided for the rest of us.  So many people offered to bring safe food, but the truth is, we didn’t feel that we could accurately convey what goes into ensuring that a meal is safe, nor could we ask people to take such precautions.  Those friends of mine, what do you think they did?

1.  One gave me a detailed list of everything she was making ahead of time, including brand names and ingredients.  She actually did this for several options and asked me to choose one.  It was incredible!!!
2.  Someone removed all labels from the ingredients she used in her dish and taped them to one big piece of paper so I would have them in front of me.  Of course, she checked first as well, but this way I could read them for myself.
3.  One person took photos of all labels with her phone and brought it to me to scroll through before letting Elena eat.  I knew every ingredient was safe.
4.  Some ordered take out from a place we trust and gave the manager the shake down to make sure they got it right.

Make no mistake, the unsafe meals were greatly appreciated and enjoyed as well.  I don’t want anyone for a minute to think they should not have brought those delicious homemade meals of allergen filled goodness that I so looked forward to and enjoyed so thoroughly.  The truth is, I like cheese.  I like creamy, delicious, allergen filled foods that my daughter cannot eat.  It was such a treat for me to have “cheats”.  I didn’t mind whipping up a quick chicken breast for Elena and waiting until after bedtime to indulge.  I appreciate each and every person who loved on us in this way.  I’m focusing on the others in this blog because it is about our struggles with food allergies.  See my belly full of goodness blog for details about these other meals ;)

Finally, we feel the love by how we are treated in our own home and at our own parties.  I tend to host parties and play dates whenever I get a chance so that I know Elena will be able to celebrate holidays and events safely.  When we have people over, all of our food is allergy free.  We do not have anything at our party that Elena cannot enjoy.  This makes for some food options that are a bit out of the ordinary for many kids.  Kids who are used to goldfish, cheesy foods, creamy veggie dips, and other “kid food” are faced with veggie/hummus platters, vegan cupcakes, and whatever other festive Pinterest party food I have modified.  Do you know how many complaints I have heard when the kiddos see the food table?  None.  I have never ever heard anything negative about our less than customary spread.  Even more amazing, the adults are open as well.  You might not think it, but adults are far more difficult to please than kids when you mess with “traditional” food options.  I have heard grown ups turn up their noses at specialty diet foods more often than I care to remember.  I have even seen family members of another allergic child refuse to eat his birthday cupcakes because they were allergy free.  I had a difficult time picking my jaw up off the floor on that one.  



Here are some of our allergen free party tables...
 
Elena's 3rd birthday party: Fancy Nancy themed


Halloween Bash


Valentine's Day Play Group






Thank you to all of our wonderful people for being on our side of this battle.  I cannot even begin to express what it means to us.  You have changed our lives for the better!!!

  

5 comments:

  1. Well, let me be the first to say. What a great post! It is SO hard and it is so nice to have those special friends that you know are on your side. I recently attended a birthday party with my kids, of course i had all of my "Roe friendly treats" and my sweet friend had thought of my little allergy buddy in EVERYTHING she did! I am tearing up just writing this. So amazing when you have those people on your side..... and you are so right, the kids don't care. I cringe when i go to a party and they have that huge bowl of cheesy poofs. DON"T they know that stuff sticks to everything and it WILL KILL MY BABY!?!?!?!? Kids like fruit! I feel like shaking some moms, "stop poisioning your kids!"
    Love knowing we have kindred spirits out there. I hear ya girl

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    1. I'm with you. It makes me tear up too. Cheesy poofs, ugggh. I don't think I have encountered them in the 2 1/2 years since Elena was diagnosed, surprisingly enough, but I dread the day when we do. Our greatest nemesis is the goldfish cracker with it's cheese dust and cute fun shape all in one enticingly deadly package. Keep fighting the good fight!!!

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  2. You know, Em, I think you have managed to find an amazing balance through all of this. You graciously accept help and gestures (hard for most of us to do), while being cautious for Elena, while providing a safe environment, while occasionally being around some of the allergy unfriendly foods once it's safe (ie. after Elena's bedtime.) I don't know how you do it, but I think it's amazing.

    I LOVED reading the line about your days of questioning whether or not you had the right to serve allergy safe foods to others being OVER. That must be a huge milestone in itself.

    Thanks for helping us all learn from your experience. Hugs to both of your precious girls.

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  3. Thank you, Kelly. It is hard to find balance, but we sure do try. Thank you for reading and posting!!! We need to see Jack soon. I'm sure he is getting so big.

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  4. Those are amazing photos! What an inspiring post! Exposure and exclusion are the perfect words to boil it down too. Hang in there! In my experience, the exclusion part really does get easier as you go along. Jen at dairyfreediner.wordpress.com

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