VERY VERY big
to you.
Oh, how my eyes welled up reading your post. You are SO
not failing. You just aren't.
So many of us have been where you are.
My daughter is now a very smart-mouthed (but obviously living and healthy) 14yo young lady.
When she was two, I:
a) suffered horribly from PTSD after a reaction that nearly killed her-- my DH made the mistake of
picking her up and holding her upright while her BP was crashing-- she turned white and her eyes rolled back in her head as she SWOONED.... I'll never--ever-- ever-- forget that night. Never. I really thought she was dying. I rode in the back seat with her, epipens out and ready-- SCREAMING in her face to keep her responsive on the 80
second ride to the emergency room. That was the last reaction in which she had widespread hives... and I've seen worse reactions since, but that one haunts me still-- she was
so little, and we've never figured out what caused it. She hadn't left our (allergen-free) house all day.
I still remember all the details-- I don't count on it, but eventually some day that last puzzle piece might appear. {sigh}
b) I was also so incredibly depressed-- she was supposed to be "outgrowing" some of her many food allergies... and it wasn't happening-- she was gaining new ones instead. I cried the night that I had to make her pumpkin tapioca... er..
pancakes?? for dinner because that was all that I could figure out that she wasn't allergic to at that point... I cried because they were so revolting that I'd have rather eaten cardboard, and it was all that I had to feed her. What on earth was I doing WRONG??
c) I felt so incredibly lonely-- I couldn't TAKE my child anywhere because other children always had FOOD. Food that my child was allergic to. We couldn't even go to the darned public library. Every outing was a serious danger. It was awful. I had no friends because-- really, who not living this could possibly wrap their brains around it? I was
living it and it felt a little un-real.
Not to provoke your fears-- but to let you know that
you are not alone. You are not doing anything wrong. You are doing a GREAT job-- you did the right thing
where I failed-- you gave your child epinephrine when it was needed. I did not. I could have lost my daughter and then had to live with the knowledge that I failed to do what I should have.
Some ideas to feel more in control:
a) give yourself permission to listen to your gut and put its advice before all others. If your mom-gut says "Nah, we'll skip that party" then DO IT. There's usually a reason.
b) don't listen to anyone that doesn't live this-- not about this-- YOU are the expert in your child's food allergy and in keeping her healthy and safe. You'll get better at this very big job with time, I promise you.
c) develop a protocol for foods-- but always defer to mom-gut and its inner voice. If it tells you that "now" isn't a good time to try "new food" then that's fine-- save it for a day when a trip to the local ER would be more convenient or less harrowing.
d) develop a protocol for BUYING food-- try to read labels three times, and if possible, using two or more literate and undistracted adults-- once when you put it in the cart, once when you put it away at home, and once as you open it for use.
This stuff isn't weird-- it's just what you do when you live like this.
I'm really, really glad that you found us. Hang in there, okay? Your little girl is VERY lucky to have a mommy who cares for her so well. Truly.