What’s in a name?

I’ve been thinking about starting a blog for a while and my husband has really been pushing me to share what I’ve learned about FPIES as well as my adapted recipes.  He’s right, I’ve learned a lot about the illness and how to survive with it.  I want other overwhelmed and frustrated parents to know that it gets better and to learn from my research (and my mistakes).  The only problem is that I’ve been stuck on a name for my blog…kind of.  I mean, if I’m completely honest about my relationship with FPIES, how I feel about FPIES, and my most frequent thought about FPIES, the phrase that pops into my head loud and clear is: “F You, FPIES!”

But is that really an appropriate title for a blog starring my son?

For those of you that know me personally, you know that my husband swears enough for the both of us, and I just don’t use that kind of language very often.  My closest friends can probably count on one hand the number of times I’ve said “the F word.”  I don’t have anything against obscenities, I just don’t use them.  So the fact that this is the phrase that comes to my mind so often is pretty significant.

I guess it’s because I’m angry at FPIES.

FPIES and I are definitely in a fight.  You see, I have these ideas of what a normal childhood should include.  They aren’t crazy ideas.  They are things like exploring a playground and eating cookies and finger painting.   They are activities that most kids enjoy and most parents don’t really think about.  But for us, FPIES gets in the way.  And it really pisses me off.  FPIES is like this giant storm cloud that continuously tries to ruin our picnics.

Well we aren’t going to just sit inside all the time and wait for the rain to stop.  I’m going to get a giant umbrella.  Picnicking under an umbrella isn’t the same as picnicking on a sunny day, but at least we will have our picnic.  And in some ways it might even be more fun, more of an adventure.  So, HA! Take that! F you!

This is how I feel each time I manage some small victory over FPIES.  I just think – F you and your minefield of Cheerios at our playdate, F you and your ubiquitous soy, F you – we did it anyway, we had fun, we ate something yummy and we stayed safe.  We win!

So, FPIES and I are in a fight that I am determined to win.  It seems fitting to document every victory in a place whose name reflects so much of what I feel.  And, to be fair, I will also document the losses.  Those are the times when we will learn the most and feel the anger and frustration and sorrow that make the victories so much sweeter.  And, coincidentally, the losses also cause me to mentally utter those same words.

I hope you aren’t offended by my blog’s name.  Perhaps it’s a little edgy for the allergy mom community.  I worry that it will turn people off and they will not read the meaningful, heartfelt, factual, G-rated content.  I still feel a little uncomfortable associating something so personal and about my little angel with this language.  But somehow it seems more appropriate than inappropriate.  I’m in this fight for him and I’m sure he’d want me to be honest with myself and all of you about how angry I am at FPIES and how proud I feel with each small victory.

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8 thoughts on “What’s in a name?

  1. Hi Cathy! Welcome to the FPIES Mama world, and sorry you have to be here. I think we all are reading this with a collective head nod as we think to ourselves “Yep. FU FPIES!” No offense at all. Just a heartfelt “Hi” and “You’ll get through this.”

    I’ve blogged about our FPIES journey for 19 months now, and occasionally one of our experiences is devastating enough to warrant the use of an obscenity. Not a regular thing for me to write that way, but…it happens. FPIES is a bloody evil beast.

    I look forward to reading your story! (And think I have a friend you ought to “meet” online – a fellow FPIES researcher mom!)

    Liked by 1 person

    • Thank you so much! It has been so wonderful to be welcomed into this community and to hear from other moms who have similar experiences and frustrations. I look forward to getting to know you better and share our successes and tips. I would also love to “meet” your friend!

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  2. It doesn’t turn me off. I felt that way MANY times during my journey through FPIES. My FPIES baby is 5 now, and totally outgrown it all. I look back on those times where I was so upset by the lot we were given, and I realized it was all for my growth. My 3rd child ended up without a definitive FPIES diagnosis, but with multiple food sensitivities that we never quite figured out fully. He’s 2 now, and pretty much eats whatever he wants, with just a mild sensitivity to cow’s milk. I blogged about my adventures on fpiesbaby.blogspot.com but haven’t been there in a LONG time. Anyway, have fun with your blogging journey. I still get emails from time to time from other parents that are looking for answers, and I love sharing my experience with them. It has blessed my life to give support to other families going through it. -Meredith

    Liked by 1 person

  3. I look forward to hearing about your journey and the information that has helped along the way. Your educational background makes you very well equipped to do creditable research. Has that made the journey any easier?

    Liked by 1 person

    • Thank you! My research background has been helpful. I am a pretty discerning consumer of information and my experience helps me to determine which are the reputable sources and I also have access to scientific journals, so I don’t have to rely solely on google. However, sometimes I get a little too obsessive and wrapped up in the research 🙂

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  4. Cathy,
    You are so brave, smart, and determined! I am so proud of you and your willingness to share all you know about combatting FPIES. I’m so glad you’ve decided to take the plunge in starting a blog. I look forward to celebrating your triumphs and sharing the burden of your challenges.

    You are an inspiring woman!
    KT

    Liked by 1 person

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