Hey-- if there are old posts from {ahem}  other places...


I wound up wanting to look back in time today.  It's been about a decade, and I suddenly found myself thinking back to CSC and her "comfort zone" thread back at PA.com...  I once wrote one of my most lucid posts ever there.  (Though I'm quite sure that opinions differ on the point of ANY lucidity, I at least felt that it truly captured something special, at least back in 2008, which was likely the last time I looked at that post, but I recalled one phrase "she loves life, and it loves her" well enough to dredge it up.  I needed to read it again, because while it was wistful, it wasn't beaten down or hopeless.  I needed that this week.)

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By {me} on Mon, 07-17-06, 05:07

Well, well, well. I guess I will just go ahead and answer. I have been waiting for about four years now, hoping against hope to become one of the people who seems to "have it all together" and be unafraid and emotionally unaffected on a daily basis. (sigh) Laissez-faire, where are you??

But I give up. It is never going to happen for us. DD was 11 months old when she was diagnosed via a near-death anaphylaxis experience. And we didn't really wise up and develop our INFORMED current comfort zone until two things changed us forever. One was that DD came even closer to death with a second anaphylaxis episode (the trigger of which was never identified or even suspected...  ) and the second was the death of Nathan Walters. My daughter was nearly three then.

While we had never had a terribly loose comfort zone (we never had peanuts or eggs in the house after her diagnosis and never went anywhere without her epipens), we became a lot more careful then.

Our comfort zone hasn't changed very much since because neither has our situation. DD is still very much at the sensitive, rapid, and severe end of the PA spectrum. Even her aerosol rxns develop in seconds, and while she has outgrown the wheat and soy allergies that made the early years so dreadful, we are still dealing with MLTFA. The egg allergy has worsened considerably, to the point that now she is aerosol sensitive to that as well. And the dairy is the weirdest thing I have ever seen-- it comes and goes. And yes, it really is "allergic" and not intolerance. She gets hives that turn into eczema-- classic allergy for her. Sometimes she can actually eat traces of cheese, however. Bizarre. We keep dairy in the house, however-- unlike the tree nuts, peanuts, and eggs.

Oh well. We recognized after approaching no less than TEN local preschools that none of them, not one, was really capable of meeting DD's needs. Family and friends mostly derided our decision to homeschool. But my mom, a former teacher, quietly agreed that this was for the best under the circumstances. We felt like we were giving up, but knew that we had little choice. Even her allergist encouraged us to homeschool in his last appointment prior to retirement. (A first in his many many years of practice, he hinted.) We figured he ought to know, having lived firsthand with a life-threatening FA himself. A local K-2 teacher's aid told us we were "absolutely doing the right thing."

Anyway-- our DD has never "gone to school" but is happy and well adjusted anyway. She wanted to try a cyberschool during third grade, and seems to like that quite well. She has also skipped two full grades and continues to work at that pace. So school wouldn't have been doing her many favors anyway, probably.

We eat at two local restaurants that know us well. And Taco Bell, when the dairy allergy lets up enough to allow it. We buy little in the way of processed foods anyway since DH is soy allergic.
DD has never eaten commercial bread, ice cream, or baked goods. I trust only about four companies entirely, and even then, I am suspicious when I see a dangerous product appear in similar packaging... I look for the possibility of shared (and undisclosed) lines continuously. Even if it slips past me, DD always knows. She knew when Barilla began batch testing the egg line, and began to refuse to eat it well before the new line appeared.

She has never been on a sleepover, and has been to only four birthday parties. She has been to extracurricular classes, but never without me sitting in the room with her. She has been to the movies perhaps a dozen times.

It is only in the past four months that we allow her to go into a neighbor's yard or home without one of us in direct visual contact with her. She knows that she may never eat or drink anything at someone else's home, and she knows why. Not even water is safe for her if their dishwasher also holds mayonnaise or peanut butter. It is difficult to teach her how to shop for groceries as she is so sensitive that she cannot really go to the store with us without routinely experiencing hives or itching eyes, nose, and lips.

I have learned to hate people and food. Especially people with food. LOL! I am frightened of messy looking children. Particularly in groups or chaotic, difficult-to-exit situations. I have learned to provide the question and explanation even when it seems absolutely impossible for there to be risk. ("This is going to seem like a very strange question, but do you allow snacks while the students are picking at the owl pellets?" LOL!)
As others have mentioned-- I am never comfortable when DD is outside of my own house. Not even at the library or my own office.

With one possible exception. Art museums are wonderful as the docents act as the "food police" far far more efficiently than I ever could. 

I fight very hard to keep my daughter's life "normal." I do whatever is necessary to allow her to have all the experiences her unaffected peers do. But it is a fight. Every day.

We travel. But we cannot fly, and we won't go where medical care isn't available. We cannot count on DD ever being able to eat in any restaurant. So where we travel, we pack food for her. Always. Travel for DD will never be about "food," as it just isn't possible for her. But it can be about art museums, breathtaking sights, awe, memories, and wonderful experiences.

I am humbled by my daughter's resilience and inner strength. She is joyful and chatty-- a real social butterfly. She loves life and it loves her. I just wish it weren't so complicated.

So-- after four years, still the same. We live this way becuase DH and I both understand with our hearts that there must never be a "next time," and no convenience will ever outweigh that.
Older, but not really wiser, I guess. Enough rambling.



Edited to fix spelling... glad CSC enjoyed my paragraph in spite of it! 

[This message has been edited by {me} (edited July 17, 2006).]

Okay-- well, our life has certainly improved and become simpler since then.   Well, in some ways it has, anyway.  No more milk allergy to speak of, and the egg allergy isn't as restrictive as it was then.  Other things haven't changed.  But we've gotten used to living this way now.  I would have said then that we were "well adapted" to living with food allergy.   I'd have been wrong.  My mother's dying in 2008 changed me permanently w/r/t food allergy management-- some things became far less negotiable, and others simply ceased to matter to me (and my dd, who was nine at the time).

I'm thinking about sharing this as a synopsis-- or the basis of one, anyway-- to provide a WINDOW into our lives for someone who has no idea what we live with.  Debating.  Needed to pull it up to look, anyway.

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Hopefully others will feel free  to add their own as they feel a desire to revisit memory lane a bit.