Thursday, September 13, 2012

Allergy Isolation

I know I've blogged before about how isolating food allergies can be.  But I get so many reminders of the isolation and it can be hard to not become discouraged.

I called several homeschool co-ops for the kids-snacks are served.  They weren't very willing to work with me or change the snack or even eliminate the snack as a safety measure.  So, we can't attend.

End of year recitals and parties-they all contain lots of cookies and punch.  We can enjoy the recital but have to skip out afterward on the fellowship time.

Church events are horribly difficult too:
Church meeting-refreshments are served.  Nope, can't attend.
Church sign up night-popcorn and cookies for the kids.  No on that.
Kids night out-pizza time for the kids!  No, no free babysitting for us.
Sunday school class fellowship-everyone brings a dish.  Unsafe.  We'll fellowship on our own at home.
Class swim party-dinner is served.  That won't work either.
Lunch together after church-20 people at a restaurant eating things that are unsafe.  Bad idea too.

Birthday parties-that's a no brainer.  Those are never safe.

Playdates-that entails going to someone's house-a house that contains all our allergens.  No thanks.

Grocery store-well half of the store's items are off limits for us and Bee has had reactions just from being in the store.  Thankfully Prince Charming volunteers to go and bring home all the heavy sacks.

Library story time-believe it or not some of them serve snacks.  I don't think books and food mix very well but I may only be in the minority on that one.

There have been so many events that we've had to turn down and so many opportunities that we've had to pass up.  It's so very frustrating and the isolation can be depressing at times.

On one hand, I do wish all events could be safe and that everyone would respect the allergies and be willing to make sacrifices so that everyone could participate.

And on the other hand, I know how many sacrifices they would have to make and how it would be so far outside their normal that it would be impossible to accommodate us.  Asking someone to not have food at an event?  That never, ever goes over well.

We've had events that we weren't invited to simply because of the allergies.  It was so very hurtful at the time.  We found out about the events (parties, get togethers, fellowships) at a later date and realized that we were the only ones in our circle of friends not even invited.  We had an instance when the host approached us after the event and told us about the event and explained that they didn't feel like they should invite us because they knew that they couldn't accommodate us and that we would not attend.  So, they decided it would be best to just not invite us so we wouldn't have to decline.  I don't know which feels worse-having people pass you by and refuse to invite your or having to politely decline an invitation.  Ouch.  My heart hurt not just for me but for what Bee will have to experience for the rest of her life.

Yes, it's isolating.

But we have found many things we can do, even if it's just our family.  There are events we can attend and there are even people who bend over backwards to allow us to attend an event that they work hard to insure is safe for us.  And, we've learned that it's easiest to just invite people over to our house for events.  If we want to participate it usually means planning the event, hosting the event, cooking for the event, and being the one in charge of all the details.  But the work is worth it to have some normalcy sometimes.


Cristi said...

Don't give up hope. We just moved and found all sorts of allergy miracles -- my husbands' boss who had a party and whose wife could tell me every single ingredient in every single dish, the person fixing food for last Sunday's luncheon at church that saved some unseasoned ground beef for us, the Bible class teachers who make sure to have fruit snacks that are safe for Lauren, and the friends who don't say a word about the way Lauren and I bring our own dinners to the fellowship meals every Wednesday night. I count it a true blessing to find people that care and understand.

Lexi said...

Thanks for sharing! There are people out there who are so sensitive and helpful. Sometimes it's hard not to feel frustrated and alone though. It's such a blessing when people look out for us and help us.

Karen said...

What a trial for you! My son is on the autism spectrum, and after being tested for intolerances, and discovering that both he and I have trouble with gluten, eggs, dairy, and several other things, I'm trying to reform how I cook/eat/live. Your blog has been very helpful for ideas, so I thank you for that. And for sharing your story with Bee. Our reactions aren't nearly as severe as your daughters, obviously, but I do know the angst of having a very unhappy and unhealthy baby, and searching to find the cause.

I was also thinking, perhaps your daughter's doctors might be able to help you start a group for people with serious food allergies in your area? There must be others in your position, and wouldn't it be lovely to be able to find them somehow.

Lexi said...

Karen, I'm glad you found the blog helpful! And I'm sorry you're having to go through all the dietary changes. It is hard work and is sometimes very frustrating! It can be done and it's so worth it when it's helping.
I ought to try to connect with some other allergy parents in the area. I hadn't looked into that. We just moved to a new town so it might be a good idea to try to network that way. Our doctor is about 3 hours away and I don't plan to get a new dr here so I'll have to network in other ways. I don't want to give up our dr since she's been so helpful!
I hope you find some answers and that the new diet helps everyone in your house feel better!

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