What It’s Like to Be An Allergy-Mom

My son is a funny, kind, curious 9-year-old kid who likes to draw, swim, learn about whales and play Legos and tag with his friends… oh, and he happens to have food allergies. Let me be clear on the phrasing; he’s not an allergy-kid. He’s a kid with allergies. While they are very much the largest consideration during his daily life, food allergies do not define him.

In an ironic twist, if you ask him to define himself, he’ll say he loves food. In his lunchbox he carries an epi-pen and a key chain that he made that says “Jack K. Loves Food.” It doesn’t matter to him that dairy, egg and all nuts aren’t included in that food because they have never been an option for him. He doesn’t miss them because he’s never known any differently.

He was rushed into intestinal surgery when he was 3 days old. After a full recovery, he went into anaphylaxis when he had formula for the first time at 15 weeks old. So our household has been dairy, egg and nut free for nine years now, and as parents we’ve also never known any differently.

allergies

 

And that’s what this story is about. Not curing, treating, studying, diagnosing or even living with food allergies. It’s about parenting with food allergies. While my son is a child with food allergies, I on the other hand, know that I am one of those allergy-moms. The reason for the distinction is because it seems to me that kids are more accepting of food allergies than adults are.

Fortunately, my son is socially and emotionally okay with his food allergies. At this age, he seems to approach his allergies with the appropriate level of seriousness and respect, yet not be frozen in fear over them. Other kids have been supportive and matter-of-fact about his allergies and even look out for him during lunch and playdates. As we have all heard and read in various studies, allergies are on the rise with today’s generation of kids. Food allergies have always been a part of their world. Many children’s musicians sing about food allergies and popular cartoons have characters with allergies. In fact, thanks to Disney’s Prep & Landing, our kids think Santa has a nut allergy and leave him safe cookies.

But not us adults. Food allergies are pretty new to us. Most of us never grew up with a friend or sibling with food allergies. Unfamiliarity leads to a misunderstanding and a missed tone about food allergies. So while our kids seem to get it just fine, there’s a great deal of mental reconditioning and a real shift in mindset that needs to happen for us adults.

We all know that we parent best when we parent together. So I’m providing the below perspectives on parenting with food allergies so all of us can better understand what the collective we is all about and keep all of our kids — your kids and my kids — happy, healthy, supported, loved and safe.

1. As the parent of a child with food allergies, it makes us crazy when people make any sort of assumption about food allergies other than this one assumption — a food allergy is a life-threatening condition that causes children to stop. breathing. immediately. It’s very real… and it’s very scary.

2. As the parent of a child with food allergies we want you to know that this is not a lifestyle choice. While it’s admirable that some people choose to eat healthy and be aware of the ingredients in their food, we aren’t standing in the grocery store aisle reading the label on everything that goes into our cart as a hobby. We’re studying those ingredients to make sure there’s not an obscure ingredient that could kill our children. (Did you know that caramel coloring is made out of dairy? Are you familiar with the difference between sodium lactate and potassium lactate?)

3. As the parent of a child with food allergies there is not a playdate or school activity that our child will attend without us having a discussion with the hosting parent, event chaperone or teacher first. Every event my child has ever participated in (ever!) from t-ball to school to summer camps has always been preempted with a medical conversation first. We know we’re perceived as high-maintenance parents. And we feel badly about that because the level of diligence we’re forced to have about the subject of food allergies may not be consistent with the level of diligence our personalities would normally reflect.

4. As the parent of a child with food allergies we have laid awake at night, wondering if we’ll be able to spot the signs of our child’s throat closing.We’ve been told that anaphylaxis can happen in less than two minutes, so not only do we wonder if we’ll be able to identify this emergency, we wonder if our child’s teacher, babysitter, grandparent, recess monitor, friend or coach will know when our child can’t breathe.

5. As a parent of a child with food allergies we have laid awake at night, wondering if our child will ever be able to attend a keg party in college or share a random kiss. And if he does, who will carry his epi-pen?

6. Speaking of which, as the parent of a child with food allergies we leave the house remembering the basics like phone, wallets, keys — and epi-pens. We know not to leave them in a car that is too hot or too cold and we always carry at least two, if not seven. Even with insurance, they are $25 a pop, so we treat them with the utmost respect for the year that we have them before they expire. But that’s all ok, because those little devices carrying a shot of adrenaline could save our child, or at least sustain them, until the ambulance arrives.

7. As the parent of a child with food allergies, we sit outside every birthday party or sports practice while other parents leave. 

8. As the parent of a child with food allergies, we balance the emotional impact of being a helicopter parent against the medical threat of having our child go into anaphylaxis when we’re not around. We feel guilty and scared of both.

9. As the parent of a child with food allergies, we have never relaxed, sat back and actually enjoyed or tasted a meal in a restaurant. Never. You see, we spend those meals playing and replaying the emergency plan in our head while quietly observing our child’s breathing as he enjoys his meal.

10. As the parent of a child with food allergies, we regularly attend medical appointments in big time children’s hospitals where we can’t help but see other patients and deeply suffering families. And upon this realization, we are humbled and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies. While our child has a life-threatening medical condition, it is manageable. And as long as we have help from you and others in managing it, our child is alive — and that’s really something!

So yes, living with a constant threat to his life is quite a big weight for my 9-year-old son to carry on his small shoulders. And he carries that weight pretty well. But he will never carry that weight alone. As his mother I carry it, just as his father carries it. His sisters carry it and his grandparents carry it. His aunts, uncles, cousins and friends carry it. And just by reading this, you too have lightened his load. So thank you for reading. Thank you for taking a moment to try to understand. And thank you for helping to keep all of our children safe.

 

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12 Comments on What It’s Like to Be An Allergy-Mom

  1. Julie Moore
    February 27, 2013 at 1:18 pm

    Well said, Carissa! I don’t have kids with food allergies, but I was misdiagnosed with them personally or miraculously cured from them years ago so I know what it’s like to live each day wondering if this or that was safe for consumption. I also have family members and close friends who have severe food allergies and other medical conditions like diabetes that need close monitoring. Because of said things, I have a blog dedicated to helping people find recipes and resources. Why? Because it’s the right and decent thing to do.

    When I saw those clips, my momma bear came out, too. I live in a small town and one of the kids in my oldest’s class have food allergies and everyone has made a big deal about how they can’t have this or that because of him. That ticks me off to no end and I strive very hard to make sure that food is safe for that little man. He is good friends with my son and we even had him at my son’s birthday party and not a stitch of food there was allowed to be served that contained ANYTHING he was allergic to or intolerant of by MY choice. His mother told me that I could have gluten there but please no peanuts. I informed her that there would be neither. And you know what? She was able to leave her son in my care with a whole lot less worry than normal. That made MY day because her son got to feel “normal”.

    I just hated that she sounded a little embarassed that I was making provisions for her child’s allergies and sensitivities. In my mind, why would I not? That’s the nice and considerate thing to do. I just wish more people felt that way and would stop making her feel like garbage when she’s just doing her job: keeping her son safe.

    I’ve heard people bash on procedures put into place because of a child having an airborne anaphylaxis allergy to peanuts before. I’ve seen a child go through near anaphylaxis thanks to a babysitter assuming something was safe because they didn’t think a rice soup would contain wheat or dairy or eggs. I’ve seen people whine that they had to spend a dollar more on this or that to make food safe for this kid and how fair it was. Hello, people! If it is THAT hard for you for 1 hour, 1 day, imagine life with it 24/7 and then throw in that it’s YOUR KID. That would change perspective, I would hope.

    Anyway, sorry to rant, but momma bear and all that. 🙂 I hope this situation opens eyes and I’m glad FARE got involved. Maybe it will spark some real change, but I’ll remain skeptical until I see it.

    Bless you for being a good mom to your son!! If I can be of any help finding allery-safe recipes or information, please don’t hesitate to contact me. If you have any to add or if you find anything false on my site, please let me know so that I can fix it ASAP. I want to help make your job easier, not harder. Take care.

    Reply
    • Carissa
      March 1, 2013 at 2:24 am

      Julie – “because its the decent thing to do”. I love it and love that you “get” it…your right on with helping your son’s friend feel normal. I’d love to check out your blog and use it as a resource. Do you mind telling me where I can find it?

      Reply
  2. Wendy Mueller
    February 27, 2013 at 3:34 pm

    Wow, what a heart-felt post! My son does not have life-long food allergies, but after four and a half years recently came off the Ketogenic Diet, a medical therapy diet that severely limited his carb intake to 2.18 grams per meal. Any more than that could have resulted in life-threatening seizures because he is at high risk for SUDEP (sudden unexplained death in epilepsy). Every single point you made hit home–except we travel with our Diastat syringe at close to $200 a use. We even had to read labels on hand soap, sunscreen, shampoo, etc. because many contain glycerin which can be absorbed by the skin and metabolized as carbohydrates. It can feel crazy, but we do what we have to to keep our kids safe. Take care, hang in there, and keep your mama bear close–she’s important!

    Reply
    • Carissa
      March 1, 2013 at 2:36 am

      how scary for you and your son, Wendy. Its nice to know that we’re not alone. (we read soaps, etc too..its so many places you wouldn’t think about, right?). Anyway, we’re not crazy – just protecting our kids. Obviously we’re all most concerned with our children’s health and life first, then the social emotional impact on them. But there is also a very isolating social emotional impact on us parents as well. If anything, at least the NickMom video is helping us all connect on that front…even if its to express how upsetting it is.

      Reply
  3. Liz
    February 27, 2013 at 4:31 pm

    You give me goose bumps just reading!! My mama bear has not reared her head as of late, but I know she could at any minute.
    Your insights are SPOT on and I am passing this on to people I know because honestly, you said everything others SHOULD know about our lives….My J still has his nut allergy and we are still diligent (some call anal) about things, but it’s my CHILD’s LIVE….

    Thank you!

    Reply
    • Carissa
      March 1, 2013 at 2:38 am

      Thanks for reading and sharing, Liz. Its so hard to describe to someone who isn’t living with it….its such a heavy weight for us parents to know our children’s lives are hanging on just one food mishap. I appreciate the feedback.

      Reply
  4. Aura Poon
    February 28, 2013 at 12:28 am

    thank you for this–(as I wipe away the tears dripping down my cheeks) so true, so true. You either get it or you don’t.

    Reply
    • Carissa
      March 1, 2013 at 2:26 am

      yep – that’s the phrase my husband and I say all of the time “get it” or “don’t get it”. Thanks for reading, Aura.

      Reply
  5. Jennifer
    February 28, 2013 at 9:35 pm

    My son who has food allergies was sick in the middle of the night having a reaction when I turned on Yo gabba gabba to see this commercial instead of a cartoon I was hoping to have help calm him down and rock him back to sleep. It really hurt for me to have my sick son in my lap and people mocking something so serious. I never expected it would go big so fast after i posted about it but I am so thankful for people like you that stood up for it and to me stood up for my son. It was very ironic that he was suffering from a fa reaction when i turned this on but amazing how may stood up to say it wasn’t right.

    Reply
    • Carissa
      March 1, 2013 at 2:26 am

      I’m so glad you got the ball rolling, Jennifer! It goes to show the power of us all working together, with each other, for all of our kids. Thank you, thank you.

      Reply
  6. ElisePrincess03
    March 7, 2013 at 12:08 am

    These were not issues 60 years ago because polution and toxins are so much higher in our environment now they are poisoning our being even before birth. If any were severly allergic to foods, those children died early in life. Medical advancement has made wonderful strides in keeping up with our polution, sadly many of the medicines are being dumped right back into our environment through waste treatment water. I feel badly for these mothers and the society that must take on this extra burden. I don’t know which side of this issue I lean towards. I certainly am not in favor of evolutionary thoughts (survival of the fittest) however I believe it wont be until we fix the real problems that these issues will not cease to come up. In 50 years from now we may be having this discussion about why more manufacturers dont make gloves for 6 fingers. This is no joke, many water-dwelling creatures already deal with this. My sympathies to those affected by this ongoing source of worry.

    Reply
  7. Casey Levy
    April 26, 2013 at 5:26 pm

    Thank you for your voice! Our daughter is allergic to peanuts and tree nuts and she was also born with congenital heart disease. It is very hard, as a mom, to give up control- there is not a person that takes care of, worries more than mommas do. I worry every single day about Samantha accidentally ingesting peanut or tree nut product. She has been teased by one particular boy multiple times and that also makes me very sad. I believe that educating people around her is important, but there is always that one person that has to make jokes and tease about this situation. Samantha asks me often ‘Why did God make me have this allergy?’ And I tell her that we were all created perfect in His image- but the truth is that I don’t know why.

    Reply

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