Shame On Me

I have this big idea to have other people in our lives write some perspective blogs, telling about their experiences with food allergies, either through their interactions with us or with others.  When I was thinking about these perspectives, I kept hoping our guest bloggers will be edgy and raw.  I want them to tell what they really think and how they really feel.  I want them to put aside all of the right answers and supportive things to say, and just tell it like it is.  The more I thought about this, the more I realized I haven’t done that myself.

I have touched on some of our struggles and many of our accomplishments with living with food allergies, but I haven’t really written a dirty, honest blog about what it feels like to be on this side of it all.  Here goes…

There are a lot of things I HAVE to do because I have a daughter who could die if she is exposed to certain foods.  I HAVE to keep her safe and I HAVE to help her live a normal life.  These aren’t fun undertakings that I have taken upon myself because I am an exceptional mother.  These are requirements.  I’m not going above and beyond when I send her to a party with a safe cupcake.  I’m just trying to meet the requirements of being a food allergy mom.  Is it fun?  Hell no.  Is it going to make her the happiest kid on the block?  Let’s just say, it’s a good day when she doesn’t break down because her cupcake was too different from the others.  Luckily, this usually happens after the fact when she is reflecting on her day.  At four years old, she already knows not to draw too much attention to the differences in front of others.  Is this something I have done to her?

I find it interesting when people say things like, “you’re so good at this” or “you were made for this” or even “I don’t know if I could do it”.  Really?  Was I?  Was this somehow meant for me?  Was my child supposed to have this horrible life threatening allergy to something she can’t get away from because I have a knack for it?  If not, then it must be by chance.  Did we just get lucky that I happen to have a skill set that enables me to keep my daughter alive?  It’s strange to be told you are good at something that you don’t want to be doing and that you have no choice other than to succeed in.  If I don’t do it, she could die.  Trust me, you could do it and you would be good at it too.  It’s not a gift.  It’s just enduring a curse.

I’m not going to say too much about the “theorists”.  You wouldn’t believe the conversations in which people tell me her food allergies were probably caused by something I ate when I was pregnant or something I didn’t eat or being too clean when she was a baby or not clean enough.  The theories go on and on and usually place the blame on the mother.   All I can really say about this is…DON’T DO THAT!!!

Here comes the part where I shatter your theories about me being made for this.  I hope the people my daughter encounters in the world are nothing like me.  I had so many ideas about what a “food allergy kid” is like.  There was a time when the mention of food allergies would have evoked a very specific image for me.  Food allergy kids are nerdy and sickly.  They probably don’t have the best social skills and they’re afraid of everything.  They’re like the snot bubble kid from the movie Little Giants or [insert your own generational reference].  Don’t even get me started on the kids with Asthma.  What kind of word is that anyway?  Shouldn’t there be some vowels in the middle?

Little-Giants-picture

Now that I have a child with anaphylactic food allergies to egg, dairy, peanuts, and tree nuts, as well as asthma, I no longer think this way…is what a better person than I would say.  I just can’t seem to get away from the social stigmas that I have attached to these things.  When we found out about her asthma, I was pretty terrified.  I had read so many stories about split second decisions where an allergic reaction was mistaken for an asthma attack and an inhaler was used rather than the Epipen.  The outcome is usually very bleak.  As bad as that was, I still held on to my social concerns.  Now she’s going to be carrying around an Epipen AND and inhaler.  We might as well just tattoo, “bully me” on her forehead.  This is really only a valid concern if she encounters people who think like……me.  Is this a good time to suggest the media is to blame?

I need to clarify that my daughter in no way fits the profile of a “food allergy kid” that I held for so long.  I have met many other children with food allergies since she was diagnosed, and they don’t seem to fit it either.  I’m ashamed that it took being her mother to make me see how ridiculous it was to assign all of these personality traits to this medical condition.  How closed minded of me.  This is where the “theorists” would say, “Maybe God knew you needed this experience to change your perspective.”  Seriously, don’t do it.

My fear is that others like me will never have a change of heart.  Most people will never have a child with severe food allergies.  If that’s what it took for me to break a stereotype I didn’t even know I had, what hope is there for her?  My hope is that she encounters people in her life who are better than I am.  So far, I think she has.

Image

 Elena,

You not only hold my heart, you have also changed it.    

Love, Mommy

16 thoughts on “Shame On Me

  1. Beautifully written. You are a great mom with wonderful,adorable children. Yes,being the food allergy mom is not glamorous,it’s not a role that we would have chosen for ourselves,we certainly would not have picked this life for our kids. We have all been dealt this life…..well, I don’t know why. I am glad that we have each other to rely on though.

    • Thank you, Randi! I can’t imagine navigating all of this without the food allergy community. I’m sure it would feel very lonely. Social media has been a real blessing in this journey.

  2. Thanks for your brutal honesty. Sometimes, as a mother, I feel I shouldn’t complain or ask, “why me?” for fear that I will seem ungrateful. Mother’s guilt can be consuming. Maybe if we all go ahead and admit how hard it can be, we won’t feel so alone sometimes.

    • There is nothing wrong with a good “why me” every once in a while. Mother’s guilt is one of those things nobody ever tells you about. I don’t even know if there are words to describe it.

  3. Amen to that. All of it! I can relate- in a very different kind of way…to the comments. “God doesn’t give you more than you can handle.” Actually…sometimes it’s WAY more than you can handle, and yet you get through it…because there simply isn’t an alternative. “What doesn’t kill you makes you stronger”…then I should be able to lift all of our groceries out of the car with my pinky while carrying three kids with the other arm. I’ve learned a great deal from you…and our family would be honored to get to spend time with and play with a child as wonderful as Elena. I hope that my children will befriend someone like her at school one day…I’ll know just who to come to for advise on how to make them feel welcome! You’re probably given encouragement and praise that sometimes you don’t even feel worthy of…but you are, my friend…just by trudging through it and educating the rest of us along the way! Just so you know…I’ve never pictured Elena as the stigma-type child…just a beautiful and incredibly smart little girl! She’s a lot like her Mama from what I can tell.

    • Elizabeth, you are so right and so sweet. We can all learn from each other and I have learned a lot from you as well. I’m so glad for the glimpses into your world and for getting to witnessed the mountains you move every day.

  4. Amen amen amen amen amen amen.
    Even though food allergies aren’t one of our challenges, this whole thought process of how “I personify my own worst fear for my child” is something I struggle with all the time. I wrote about this recently and was overwhelmed by the responses I got from the families in the DS community. It’s amazing how we all have these feelings but are so scared to say them out loud. Good for you for saying it.
    Doesn’t mean I don’t still think you are amazing though… 🙂

    • Victoria, I remember that post and haven’t been able to stop thinking about it since I read it. That’s what got me thinking about a lot of these points and feeling like I needed to get it out. Blogging is so therapeutic. I always feel like I can just let it go after I post it. Now it’s real and I have acknowledged it and I don’t have to dwell on it anymore. It’s amazing how such different struggles hit mothers so similarly.

  5. Thank you!!!!!!! Fortunately or unfortunately, I have had the same exact thoughts. I try to stay positive for the most part but I often experience these frustrating, mad thoughts and even 2 year old type tantrums (when Im alone) due to my son’s food allergies. I will say these mini episodes have become less frequent. My 4 year old handles his food allergies way better than I do. Maybe its because he is a little boy, but he could care less about the look of the cupcakes or even what kind of special treat someone else has as long as he has something:) Im the one that misses the details or expects him to be disappointed. I always cringe when someone overly apologizes to him for not having a cupcake, ice cream or whatever that is safe for him because to him there is nothing to apologize for—and I want him to keep feeling that way. I’ve also gotten over the embarrassment of him asking very loudly in the middle of birthday parties if something has cow’s milk in it or cheering in the middle of the grocery store for the whole world to hear if we find a new food or special treat that he can have. Most children his age don’t even know the difference between milks or that there are any other type of milk. I am now extremely thankful that he is so inquisitive and questions every food that is offered to him. He even asked my sister in law once if the banana she gave him had eggs, milk, or nuts:)

    I so agree with your comments of the theorists! I have also dealt with family members who just don’t get it but love to tell me their opinions. One example, he can have this butter because its mostly just fat and oil and hardly has any milk in it. What?!!!! Or the best one is that I am an over protected mother and he is an only child and that is why I watch carefully and monitor what he is eating and how it is prepared. That really pushes my buttons!

    I coud just keep going and going….. Thanks so much for being so honest and being such a support to my family!!!!!!!

    • I have never actually had anyone say to me that a little bit shouldn’t hurt her, but I have heard those comments second hand and they always terrify me. Especially because, in those instances, the person saying it wasn’t talking to the mother or the allergic person. They were just making a statement to a third party about why they didn’t really have to worry about being careful. Hearing things like that make me sick to my stomach. Also, I kind of think that anyone who would say you’re overbearing and too careful because he is an only child would probably find something to criticize even if he didn’t have food allergies. That’s just flat out foolish and unkind.

  6. Oh my goodness, this totally brought me back to being a kid when my mom would pack me safe cupcakes and rice krispie squares to go to birthday parties. And I definitely got upset about it like your daughter does because I didn’t think I was “normal.” But as I got older I understood the idea of being different and that it wasn’t a bad thing, I just had to do different things every day than my friends and family.

    And I was also the dorky kid carrying around two inhalers and two epipens everywhere I went. I thought I was kind of cool with my special backpack, and many of the kids in elementary school wanted to know what those things were because they had never seen an epipen or an inhaler before. I think it has gotten much easier now that I can carry everything in a purse, it normalizes the whole issue for me and i hardly even notice it, it’s just something I have to bring with me, like my wallet or keys. I think it’s good that she is learning early about her safety and that it’s important for her to be prepared because she is her best defence against a reaction.

    Thank you very much for this post, and I think that you are doing a great job despite whatever theories or stereotypes you may have 🙂

    • Thank you! I am so glad to hear that you felt like carrying your epipens/inhalers was a special thing. We will definitely go with that angle when the time comes. I never know which of my concerns will be real issues and which ones will be non-issues. It’s nice to see someone who has gone through similar challenges to what she will face and has such a wonderful outlook. You are a great role model!!!

  7. Great job with your post! As a mom whose kids have been through all kinds of things from one in a coma to anaphylactic reactions to tree nuts and now my youngest has a disease called Ehler’s Danlos with Hypermobility Syndrome. All three have asthma. All three have some type of food allergy. But the neat thing is, they are not what I pictured either. You would never know by looking at them they have these issues. I think as moms and writers, it does us good to be brutally honest and raw at times. If we aren’t honest with ourselves about our thoughts and feelings, then how can we help our kids? You are not alone, I’ve dealt with many people thinking that I was blowing my kids allergies or illnesses out of proportion. I just have to remind them they can say that to me after they’ve dealt with what we’ve dealt with and they usually get quiet. You are doing a fantastic job and don’t let anyone tell you different. God did not give your kid this awful allergy. It is the result of imperfect bodies and an imperfect world. When I tell people that you should their faces! Have a wonderful day!

    • Thank you for this. Being honest with myself certainly can be a struggle. In fact, sometimes I don’t even realize how I feel about something until I start writing it. After I write it, I can just let it go. It really helps me so much. I love your explanation of allergies as “the result of imperfect bodies and an imperfect world”. That is exactly it.

  8. Your post moved me to tears. I am just reading it, but I see you wrote it 2 days after my son was diagnosed with a huge list of food allergies -about 30. Thankfully, they are not the anaphylaxis type. They do, however, trigger asthma coughing spells. While not life threatening, the number of different foods is overwhelming.
    He has never been a healthy kid and we are seeing a huge difference. Since he is 12, he knows exactly what he is giving up and he feels suddenly “weird.”
    I should be glad that he feels better, but I get so tired of the worry and vigilance. I am still messing up and I don’t enjoy it yet when we go out or to someone’s house. I just don’t trust them. I am also very sensitive to people’s comments like ‘you are so good at this’ and ‘you know what causes food allergies….’ It is hard not to react. Do they really think I haven’t thought of that? If they want things to blame me for, I have 12 years worth of material for them.
    Thank you for being so open and honest. It helps; it really does.

    • Oh, Tonya…thank you for your comment. I am so sorry you are going through such a difficult process. I cannot imagine the stress of dealing with that many allergens. It would be impossible to trust other people to know them all. I have trouble trusting that people remember 4. I’m sure it’s heartbreaking to see your son dealing with all of the psychological aspects of these changes as well. Hopefully he will be able to reconcile the emotional side with feeling physically stronger and healthier. Don’t let all of those “theorists” get under your skin. I know that’s easier said than done because they sure do get under mine. I guess all we can do is help these precious little ones navigate this world with what they have. Someday they’ll be so glad we helped them figure it out early, before they were on their own, right? I hope you have a wonderful Mother’s Day weekend. You deserve it!!!

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