Dear Diary (where the truth comes out),
Food allergy fatalities haunt me. They fuel the fear that I feel every day. They are the reason I homeschool my son don’t let him eat at restaurants, and only allow very few people to watch him. I can’t seem to stop the “what if” scenario that plays through my head. The only thing that seems to help is taking on all of the responsibility myself, because trusting others causes that fear to intensify. The fear of him becoming a part of the known food allergy death list (by Lisa Rutter of No Nuts Mom Group) brings me to tears.
Is it just me? Do I bring this anxiety onto myself? Are other moms, in similar situations, feeling the same thing? Do I have realistic reasons to feel this fear?
I realize that many parents that have children with food allergies have never experienced anaphylaxis. Our experience may be different than most, where our son has had two anaphylactic reactions. His situation isn’t “a severe reaction might happen if he eats this”, his situation is “a severe reaction will happen if he eats this”. I can’t even describe in words how that makes me feel because scared, anxious, fearful, and hopeless just doesn’t get the point across.
I try to focus on the positive things that food allergies have brought into our lives. I try not to talk about my fear and anxiety in hopes that it will just go away, but it doesn’t. I know I can’t be alone in this. I’m sure there are others out there that feel the same way.
How do they deal with the fear? Do they keep it bottled up too? Do they have sleepless nights where they wonder how their child will ever live a “normal” life?
I don’t share my feelings often because I’m scared of what people will think. I don’t want to be labeled as the crazy food allergy mom. I try to not even talk about food allergies unless someone asks me a direct question. I wish it were different. Jenny Sprague even wrote about how she thinks dealing with her son’s food allergies is harder than dealing with his cancer. I just wish food allergies and the people who are affected by them were respected and taken more seriously.Is that too much to ask?
-Elizabeth
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-Elizabeth
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Selena says
I could have written the exact same post, and have often thought of it, so you are definitely not alone. The fear and anxiety are visceral. ((((HUGS))))
Anonymous says
Exact same feelings every single day. I thought of homeschooling also but after a good experience at preschool for both kids decided on public. My children do not and never have eaten out at restaurants. I've also had anxiety filled sleepless nights. I will never care if I'm the "crazy" food allergy mom because if anyone else had the experiences or fears that we have all day every day, they would do, feel, think and say all that we do as well. You are definitely not alone.
Libby says
Yes, yes, yes. Haven't posted myself in almost two months because under so much stress because my son has gradually progressed to having constant reaction like symptoms (itchy throat/mouth, upset tummy). He's been to the emergency room four times in last six months and I've lost track of how many nights my husband and I have taken turns sleeping so that we can watch his breathing. We're waiting for the results from a biopsy to find out if he has EoE. There was some study showing that parents of food allergic kids had higher levels of stress than first responders in dangerous, high crime neighborhoods. The worst part about all this stress and anxiety is that our fears are completely rational. Believe me, you are not alone in this. (((Hugs.)))
eblfoodallergies says
Libby,
I am so sorry that you and your son have been going through such a tough time. I wished I lived closer to you to help in any way. Please keep me updated with what is going on.
((((((HUGE HUGS)))))))
Mikhaela Reid says
Amen to everything you said. I cannot count the sleepless nights or possibly tally up the anxiety or fear I have lived with since my daughter's first anaphylactic reaction at 9 months old. She will never eat in a restaurant with all of her multiple food allergies and I am getting very anxious about the approach of public schooling for her.
itchylittleworld.com says
It is so hard. We try our best, but what if that's not good enough? I have the same fears. You are not alone, that's for sure. Hugs! Thank you for sharing your feelings - it's how we all connect and it's good not to feel alone 🙂
eblfoodallergies says
Thank you to all of you that have posted. I think every time I voice my concerns it becomes even more real but then my feelings are validated by all of you sharing as well. Being a food allergy mom is not easy…not one bit…we are one tough crew!!
Lucy says
Every single day! My son is 3 and he is supposed to start school in September, my child care leave is over. After being home with him for 4 years and keeping him safe, I can't imagine sending him into a world where food allergies are not understood. My husband and I both work in schools so we know first hand how everything revolves around food. We are extra fearful because our son is allergic to 9 different foods with contact allergy to dairy. It's very easy to feel alone on this allergy road.
Vivian says
The fear is very real. My daughter is nearly 12 now and has not "grown out" of her egg and peanut allergies. I feared sending her to school too. Immensely. Thankfully school has been great and has been a positive experience for her as she sees other children with the same issues as her. She is very cautious with her food and I'm so very proud of her. We had participated in an egg challenge unsuccessfully last year so I am very cautious about the news of a peanut challenge which has recently aired on the media. News is positive but the fear is real, very real.