One thing that many non-food allergic families don’t often understand is the way food allergies restrict your life.
It’s not something you consciously think about, but occasionally it hits you in the face just HOW much your life has been changed by the existence of food allergies.
For FAAW, I decided to re-run a post I wrote shortly after our FPIES diagnosis that clearly shows my own recognition of the life altering aspect of our new reality. It’s pretty dark in tone, but don’t worry – I don’t feel this negatively all the time!
This, however, was a day when food allergies made me face some things I hadn’t recognized before, and it was a bit staggering for me. I think it might help convey the isolation and fear of food allergies for those who have never lived it.
…but not the way you think.
I’m sorry; I don’t typically post twice in one day but this is something I have to get off my chest.
We live WAY out in the country. Technically, our house isn’t even a part of the nearest town, a hamlet of only 76 people. We are very isolated. It’s lovely, but it can be lonely, as you might imagine.
So community get togethers in our county seat, at our church, at our lodge are incredibly important to this social butterfly in order to keep from going stir crazy.
Today I had to take the kiddos in to our county seat to deal with some boring stuff: property taxes, vehicle registration, picking up checks at WIC. On our way out of town I saw that our local bank had set up tables, chairs and tents in a parking lot and seemed to be full of folks gathered around, eating.
This weekend, apparently, is Homecoming weekend at the High School. So the whole town is celebrating.
We can’t go.
There’s FOOD there.
And “food” is my new four-letter word.
I’m so MAD. ANGRY. FRUSTRATED. IRRITATED. And terribly SAD for my family. We have been robbed of one of the bedrocks of community…the sharing of a meal. I don’t know how long it will be before we can start participating in things like this again, but I foresee many heartbreaking moments in the future where I must tell my kids “No” after they see a festive gathering like that and ask to go.
Things like 4th of July BBQ’s, parade’s, Homecoming weekend, Christmas Festival’s, Thanksgiving, Halloween…one of the first things that comes to mind when thinking of these things is, what? FOOD. Is it worth it to risk sending my child to the ER so we can wander around a festival of some kind?
We’ve been robbed of fully engaging in life.
What’s worse is that I had no idea this weekend was a town celebration. We’ve cut ourselves off so completely I am entirely out of the loop. We’ve even been avoiding church; our church is jam-packed with good, Southern, God-fearing women that think potlucks where the tables are about to collapse from delicious, dairy and egg filled food are the next best thing to Heaven. Breaking bread is a great tradition in our faith…what are you supposed to do when the bread will break you? So, we don’t go.
And because Mr. Happy hasn’t had his shots yet and CANNOT get his shots yet because he’s been reacting for so long and his immune system is weakened, I’m terrified to let him get into close proximity to so many varied people.
We’ve been robbed of gathering with our spiritual community.
I ran into a lady from our church today at the WIC office, and she was genuinely happy to see us all. She asked how we were doing, and after hearing a little of our story shared with me that she’s been praying for us, and that she understood why we hadn’t been to church for a while.
Then she put me on the spot: “Is there anything I can do to help you?”
Well, yeah! There’s a ton of things I need done! But right then? I couldn’t think of a single stinking one of them.
I’ve spent the better part of the last two and a half years doing pretty much everything on my own, with only my husband as a supporter. These food issues of my kiddos are the kind of thing that really, not much can be done to help with. She who does the cooking must ensure the food is safe; if I don’t verify every ingredient myself, we risk the ER. It’s easy to see why I’ve slowly, without realizing, taken on every burden myself to the point that when faced with a gracious offer, I had no idea how to accept it.
So, I was honest. I told her “I could really use some help. But I’m so used to doing everything on my own I have no idea what I could suggest you or anyone do for me.”
She gave me a look of compassion, patted my arm, and said “If you just want to get together to talk sometime, let me know. Do you like walking? We’ll go walking and talking some nice day.”
I thought my heart was going to break from the kindness and empathy I was experiencing.
We’ve been robbed of the purpose of community: helping others and being helped when needed.
I paid bills last night. Finally, all the medical bills we’ve accumulated have passed through insurance and are the finalized amount we owe. So, I paid everything – regular monthly bills and the hospital expenses accrued since Mr. Happy was born.
I drained our savings. We’re in the hole next month, and every month for the foreseeable future. I actually am not sure how we’ll pay our bills next month.
We only JUST finished paying off the medical bills that were accumulated from Mr. Charm’s first year of life (last half of 2010 through the first few months of 2011) in March! The majority of our married life has been spent digging our way out of a medically induced financial mess, all due to our kids food issues.
We’ve been robbed financially.
People who knew me in my emotionally turbulent youth might not believe this, but I’ve grown into a woman who truly does not like to spend every waking moment angry and irritated. I try to look to the future and not get mired down in the things I can’t change.
So far, with Mr. Charm’s MPI and egg allergy (and who knows what else) and Mr. Happy’s FPIES and dairy allergy, I’ve been holding on pretty well. I’m not wasting my time raging “Why us? Why THEM?” I’m not bemoaning the ways our lives have changed. I’ve just accepted what IS and moved on to how to handle our truth.
Except for today. Today it hit me hard. Knowing our bank accounts are drained, knowing my children will only ever be able to enjoy a friendly food-oriented gathering when they’re school age (if then), realizing how much these medical conditions have segregated us from the community on which we should be relying…today, I’m (insert foul language – be creative) off at just exactly WHAT ALL my kids, my husband and I have been robbed of.
FPIES, MPI, food allergies…they’re the thieves that have stolen such huge parts of our lives. And I hate every single bloody one of them.